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1.  Recommendations for Syndromic Surveillance Using Inpatient and Ambulatory EHR Data 
Objective
To develop national Stage 2 Meaningful Use (MUse) recommendations for syndromic surveillance using hospital inpatient and ambulatory clinical care electronic health record (EHR) data.
Introduction
MUse will make EHR data increasingly available for public health surveillance. For Stage 2, the Centers for Medicare & Medicaid Services (CMS) regulations will require hospitals and offer an option for eligible professionals to provide electronic syndromic surveillance data to public health. Together, these data can strengthen public health surveillance capabilities and population health outcomes (Figure 1).
To facilitate the adoption and effective use of these data to advance population health, public health priorities and system capabilities must shape standards for data exchange. Input from all stakeholders is critical to ensure the feasibility, practicality, and, hence, adoption of any recommendations and data use guidelines.
Methods
ISDS, in collaboration with the Division of Informatics Solutions and Operations at the Centers for Disease Control and Prevention (CDC), and HLN Consulting, convened a multi-stakeholder Work-group of clinicians, technologists, epidemiologists, and public health officials with expertise in syndromic surveillance. Recommended MUse guidelines were developed by performing an environmental scan of current practice and by using an iterative, expert and community input-driven process. The Workgroup developed initial guidelines and then solicited and received feedback from the stakeholder community via interview, e-mail, and structured surveys. Stakeholder feedback was analyzed using quantitative and qualitative methods and used to revise the recommendations.
Results
The MUse Workgroup defined electronic syndromic surveillance (ESS) characteristics. Specifically, data are characterized by their timeliness, sensitivity rather than specificity, population focus, limited personally identifiable information, and inclusion of all patient encounters within a specific healthcare setting (e.g., emergency department, inpatient, outpatient). Based on stakeholder input (n=125) and Workgroup expertise, the guidelines identify priority syndromic surveillance uses that can assist with: Monitoring population health;Informing public health services; andInforming interventions, health education, and policy by characterizing the burden of chronic disease and health disparities.
Similarly, the Workgroup identified data elements to support these uses in the hospital inpatient setting and possibly in the ambulatory care setting. They were aligned to previously identified emergency department and urgent care center data elements and Stage 1–2 clinical MUse objectives. Core data elements (required for certification) cover treating facility; patient demographics; subjective and objective clinical findings, including chief complaint, body mass index, smoking history, diagnoses; and outcomes. Other data elements were designated as extended (not required for certification) or future (for future consideration). The data elements and their specifications are subject to change based on applicable state and local laws and practices.
Based on their findings and recommended guidelines detailed in the report, the Workgroup also identified community activities and additional investments that would best support public health agencies in using EHR technology with syndromic surveillance methodologies.
Conclusions
The widespread adoption of EHRs, catalyzed by MUse, has the potential to improve population health. By identifying and describing potential ESS uses of new sources of EHR data and associated data elements with the greatest utility for public health, the recommendations set forth by the ISDS MUse Workgroup will serve to facilitate the adoption of MUse policy by both healthcare and public health agencies.
PMCID: PMC3692899
EHR; syndromic surveillance; Meaningful Use; inpatient; ambulatory
2.  Advancing Personalized Health Care through Health Information Technology: An Update from the American Health Information Community's Personalized Health Care Workgroup 
The Personalized Health Care Workgroup of the American Health Information Community was formed to determine what is needed to promote standard reporting and incorporation of medical genetic/genomic tests and family health history data in electronic health records. The Workgroup has examined and clarified a range of issues related to this information, including interoperability standards and requirements for confidentiality, privacy, and security, in the course of developing recommendations to facilitate its capture, storage, transmission, and use in clinical decision support. The Workgroup is one of several appointed by the American Health Information Community to study high-priority issues related to the implementation of interoperable electronic health records in the United States. It is also a component of the U.S. Department of Health and Human Services' Personalized Health Care Initiative, which is designed to create a foundation upon which information technology that supports personalized, predictive, and pre-emptive health care can be built.
doi:10.1197/jamia.M2718
PMCID: PMC2442266  PMID: 18436899
3.  State Synergies and Disease Surveillance: Creating an Electronic Health Data Communication Model for Cancer Reporting and Comparative Effectiveness Research in Kentucky 
eGEMs  2014;2(2):1064.
Purpose:
This case study describes the collaboration between a state public health department, a major research university, and a health extension service funded as part of the Health Information Technology for Economic and Clinical Health (HITECH) Act to establish an interoperable health information system for disease surveillance through electronic reporting of systemic therapy data from numerous oncology practices in Kentucky. The experience of the Kentucky cancer surveillance system can help local and state entities achieve greater effectiveness in designing communication efforts to increase usage of electronic health records (EHRs) and health information exchanges (HIEs), help eligible clinicians meet these new standards in patient care, and conduct disease surveillance in a learning health system.
Innovation:
We document and assess the statewide efforts of early health information technology (HIT) adopters in Kentucky to facilitate the nation’s first electronic transmission of a clinical document architecture (CDA) from a physician office to a state cancer surveillance registry in November 2012. Successful transmission of the CDA not only represented a landmark for technology innovators, informaticists, and clinicians, but it also set in motion a new communication mechanism by which state and federal agencies can capture and trade vital cancer statistics in a way that is safe, secure, and timely. The corresponding impact this has on cancer surveillance and comparative effective research is immense. With guidance from the Centers for Disease Control and Prevention (CDC), the Kentucky Cancer Registry (KCR), the Kentucky Health Information Exchange (KHIE), and the Kentucky Regional Extension Center (KREC) have moved one step further in transforming the interoperable health environment for improved disease surveillance.
Credibility:
This case study describes the efforts of established and reputable agencies, including the KCR, the state department of health, state and federal governmental agencies, and a major research university in leveraging existing networks, infrastructure, and federally awarded funding to implement interoperable health information systems for disease surveillance. Project assessment through quasi-qualitative interviews with key stakeholders facilitated evaluation of attitudes and beliefs for continued use of the cancer surveillance model.
Conclusion and Discussion:
In Kentucky, the cancer reporting initiative leveraged and enhanced a solid foundation for statewide collaboration to achieve better health and improved disease surveillance through a learning health system. Leveraging the Meaningful Use (MU) program as an overarching policy and structural driver is imperative. The cancer reporting initiative in Kentucky suggests that future surveillance and reporting initiatives will require locally adaptable solutions and that there is a need for increased technical assistance in rural settings. Kentucky’s experience also indicates that stakeholders should be diligent in identifying state-level criteria that align with MU for vetting EHR vendors.
doi:10.13063/2327-9214.1064
PMCID: PMC4371435  PMID: 25848604
health information technology; disease surveillance; comparative effectiveness research
4.  Improving patient information for telemonitoring in chronic heart failure 
Background
More and more people suffer from heart failure and the expectation is that this number will only increase the coming years. Innovations are needed to keep healthcare accessible as well as affordable. Telemonitoring is one of the promising innovations that can be deployed for making the care for heart failure patients safer and more efficient. Nevertheless, the use of these eHealth solutions are not yet in proportion to our objective. There are many reasons for this situation in terms of funding, acceptance, questions about liability, etc. Another very important reason is the lack of interoperability: there is no interaction or information exchange between different systems. This leads to a situation in which information is not, or not in time, available to the care provider. A heart failure patient using telemonitoring measures his body weight, his blood pressure and answers some questions on a daily basis. Based on these data, the care providers in the hospital are able to monitor the health status of the patient over a distance. However, care providers lack access to all information on the patient in one application. The telemonitoring information can be found in the telemonitoring system, whereas the other medical information (medication overview, medical history, etc.) is stored in the hospital information system or electronic patient record. As a result, not all patient information is available in one system or it has to be copied manually, with all the consequences that can entail.
Aims and objectives
The aim of this project is to improve the information exchange and to stimulate the use and acceptance of telemonitoring. Nictiz initiated assembling all stakeholders to develop interoperability profiles that will improve the information exchange.
Methods and results
To enable interoperability, standards are a required but not sufficient condition. It is also necessary to agree on how those standards are applied to support specific care processes and to exchange the correct information at the correct moment. This can be achieved by developing interoperability profiles. In these profiles agreements between all stakeholders are recorded on process, information, application, and technical level. Starting point was the problem on information exchange described above and the needs and the interests of the stakeholders. Based on this specific use case, health care professionals, patient representatives, IT suppliers, and insurers collaborate to make agreements about interoperability between the telemonitoring system and the electronic patient record used in the hospital. This results in functional and technical design specifications, based on the Continua Design Guidelines. These profiles will be implemented in the relevant applications, resulting in an information exchange between the telemonitoring systems and the electronic patient record systems in a standardized way.
Conclusion
With the use of interoperability profiles defined by all stakeholders, the telemonitoring data are available in the electronic patient record of the heart failure patient used in the hospital. In this way, all information is easily available for the care providers, thereby making the care for heart failure patients safer and more efficient.
PMCID: PMC3571133
telemonitoring; chronic heart failure; interoperability; profiles
5.  Reinterpreting Ethnic Patterns among White and African American Men Who Inject Heroin: A Social Science of Medicine Approach 
PLoS Medicine  2006;3(10):e452.
Background
Street-based heroin injectors represent an especially vulnerable population group subject to negative health outcomes and social stigma. Effective clinical treatment and public health intervention for this population requires an understanding of their cultural environment and experiences. Social science theory and methods offer tools to understand the reasons for economic and ethnic disparities that cause individual suffering and stress at the institutional level.
Methods and Findings
We used a cross-methodological approach that incorporated quantitative, clinical, and ethnographic data collected by two contemporaneous long-term San Francisco studies, one epidemiological and one ethnographic, to explore the impact of ethnicity on street-based heroin-injecting men 45 years of age or older who were self-identified as either African American or white. We triangulated our ethnographic findings by statistically examining 14 relevant epidemiological variables stratified by median age and ethnicity. We observed significant differences in social practices between self-identified African Americans and whites in our ethnographic social network sample with respect to patterns of (1) drug consumption; (2) income generation; (3) social and institutional relationships; and (4) personal health and hygiene. African Americans and whites tended to experience different structural relationships to their shared condition of addiction and poverty. Specifically, this generation of San Francisco injectors grew up as the children of poor rural to urban immigrants in an era (the late 1960s through 1970s) when industrial jobs disappeared and heroin became fashionable. This was also when violent segregated inner city youth gangs proliferated and the federal government initiated its “War on Drugs.” African Americans had earlier and more negative contact with law enforcement but maintained long-term ties with their extended families. Most of the whites were expelled from their families when they began engaging in drug-related crime. These historical-structural conditions generated distinct presentations of self. Whites styled themselves as outcasts, defeated by addiction. They professed to be injecting heroin to stave off “dopesickness” rather than to seek pleasure. African Americans, in contrast, cast their physical addiction as an oppositional pursuit of autonomy and pleasure. They considered themselves to be professional outlaws and rejected any appearance of abjection. Many, but not all, of these ethnographic findings were corroborated by our epidemiological data, highlighting the variability of behaviors within ethnic categories.
Conclusions
Bringing quantitative and qualitative methodologies and perspectives into a collaborative dialog among cross-disciplinary researchers highlights the fact that clinical practice must go beyond simple racial or cultural categories. A clinical social science approach provides insights into how sociocultural processes are mediated by historically rooted and institutionally enforced power relations. Recognizing the logical underpinnings of ethnically specific behavioral patterns of street-based injectors is the foundation for cultural competence and for successful clinical relationships. It reduces the risk of suboptimal medical care for an exceptionally vulnerable and challenging patient population. Social science approaches can also help explain larger-scale patterns of health disparities; inform new approaches to structural and institutional-level public health initiatives; and enable clinicians to take more leadership in changing public policies that have negative health consequences.
Bourgois and colleagues found that the African American and white men in their study had a different pattern of drug use and risk behaviors, adopted different strategies for survival, and had different personal histories.
Editors' Summary
Background.
There are stark differences in the health of different ethnic groups in America. For example, the life expectancy for white men is 75.4 years, but it is only 69.2 years for African-American men. The reasons behind these disparities are unclear, though there are several possible explanations. Perhaps, for example, different ethnic groups are treated differently by health professionals (with some groups receiving poorer quality health care). Or maybe the health disparities are due to differences across ethnic groups in income level (we know that richer people are healthier). These disparities are likely to persist unless we gain a better understanding of how they arise.
Why Was This Study Done?
The researchers wanted to study the health of a very vulnerable community of people: heroin users living on the streets in the San Francisco Bay Area. The health status of this community is extremely poor, and its members are highly stigmatized—including by health professionals themselves. The researchers wanted to know whether African American men and white men who live on the streets have a different pattern of drug use, whether they adopt varying strategies for survival, and whether they have different personal histories. Knowledge of such differences would help the health community to provide more tailored and culturally appropriate interventions. Physicians, nurses, and social workers often treat street-based drug users, especially in emergency rooms and free clinics. These health professionals regularly report that their interactions with street-based drug users are frustrating and confrontational. The researchers hoped that their study would help these professionals to have a better understanding of the cultural backgrounds and motivations of their drug-using patients.
What Did the Researchers Do and Find?
Over the course of six years, the researchers directly observed about 70 men living on the streets who injected heroin as they went about their usual lives (this type of research is called “participant observation”). The researchers specifically looked to see whether there were differences between the white and African American men. All the men gave their consent to be studied in this way and to be photographed. The researchers also studied a database of interviews with almost 7,000 injection drug users conducted over five years, drawing out the data on differences between white and African men. The researchers found that the white men were more likely to supplement their heroin use with inexpensive fortified wine, while African American men were more likely to supplement heroin with crack. Most of the white men were expelled from their families when they began engaging in drug-related crime, and these men tended to consider themselves as destitute outcasts. African American men had earlier and more negative contact with law enforcement but maintained long-term ties with their extended families, and these men tended to consider themselves as professional outlaws. The white men persevered less in attempting to find a vein in which to inject heroin, and so were more likely to inject the drug directly under the skin—this meant that they were more likely to suffer from skin abscesses. The white men generated most of their income from panhandling (begging for money), while the African American men generated most of their income through petty crime and/or through offering services such as washing car windows at gas stations.
What Do These Findings Mean?
Among street-based heroin users, there are important differences between white men and African American men in the type of drugs used, the method of drug use, their social backgrounds, the way in which they identify themselves, and the health risks that they take. By understanding these differences, health professionals should be better placed to provide tailored and appropriate care when these men present to clinics and emergency rooms. As the researchers say, “understanding of different ethnic populations of drug injectors may reduce difficult clinical interactions and resultant physician frustration while improving patient access and adherence to care.” One limitation of this study is that the researchers studied one specific community in one particular area of the US—so we should not assume that their findings would apply to street-based heroin users elsewhere.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.0030452.
The US Centers for Disease Control (CDC) has a web page on HIV prevention among injection drug users
The World Health Organization has collected documents on reducing the risk of HIV in injection drug users and on harm reduction approaches
The International Harm Reduction Association has information relevant to a global audience on reducing drug-related harm among individuals and communities
US-focused information on harm reduction is available via the websites of the Harm Reduction Coalition and the Chicago Recovery Alliance
Canada-focused information can be found at the Street Works Web site
The Harm Reduction Journal publishes open-access articles
The CDC has a web page on eliminating racial and ethnic health disparities
The Drug Policy Alliance has a web page on drug policy in the United States
doi:10.1371/journal.pmed.0030452
PMCID: PMC1621100  PMID: 17076569
6.  A knowledge-based taxonomy of critical factors for adopting electronic health record systems by physicians: a systematic literature review 
Background
The health care sector is an area of social and economic interest in several countries; therefore, there have been lots of efforts in the use of electronic health records. Nevertheless, there is evidence suggesting that these systems have not been adopted as it was expected, and although there are some proposals to support their adoption, the proposed support is not by means of information and communication technology which can provide automatic tools of support. The aim of this study is to identify the critical adoption factors for electronic health records by physicians and to use them as a guide to support their adoption process automatically.
Methods
This paper presents, based on the PRISMA statement, a systematic literature review in electronic databases with adoption studies of electronic health records published in English. Software applications that manage and process the data in the electronic health record have been considered, i.e.: computerized physician prescription, electronic medical records, and electronic capture of clinical data. Our review was conducted with the purpose of obtaining a taxonomy of the physicians main barriers for adopting electronic health records, that can be addressed by means of information and communication technology; in particular with the information technology roles of the knowledge management processes. Which take us to the question that we want to address in this work: "What are the critical adoption factors of electronic health records that can be supported by information and communication technology?". Reports from eight databases covering electronic health records adoption studies in the medical domain, in particular those focused on physicians, were analyzed.
Results
The review identifies two main issues: 1) a knowledge-based classification of critical factors for adopting electronic health records by physicians; and 2) the definition of a base for the design of a conceptual framework for supporting the design of knowledge-based systems, to assist the adoption process of electronic health records in an automatic fashion. From our review, six critical adoption factors have been identified: user attitude towards information systems, workflow impact, interoperability, technical support, communication among users, and expert support. The main limitation of the taxonomy is the different impact of the adoption factors of electronic health records reported by some studies depending on the type of practice, setting, or attention level; however, these features are a determinant aspect with regard to the adoption rate for the latter rather than the presence of a specific critical adoption factor.
Conclusions
The critical adoption factors established here provide a sound theoretical basis for research to understand, support, and facilitate the adoption of electronic health records to physicians in benefit of patients.
doi:10.1186/1472-6947-10-60
PMCID: PMC2970582  PMID: 20950458
7.  Access To Essential Maternal Health Interventions and Human Rights Violations among Vulnerable Communities in Eastern Burma 
PLoS Medicine  2008;5(12):e242.
Background
Health indicators are poor and human rights violations are widespread in eastern Burma. Reproductive and maternal health indicators have not been measured in this setting but are necessary as part of an evaluation of a multi-ethnic pilot project exploring strategies to increase access to essential maternal health interventions. The goal of this study is to estimate coverage of maternal health services prior to this project and associations between exposure to human rights violations and access to such services.
Methods and Findings
Selected communities in the Shan, Mon, Karen, and Karenni regions of eastern Burma that were accessible to community-based organizations operating from Thailand were surveyed to estimate coverage of reproductive, maternal, and family planning services, and to assess exposure to household-level human rights violations within the pilot-project target population. Two-stage cluster sampling surveys among ever-married women of reproductive age (15–45 y) documented access to essential antenatal care interventions, skilled attendance at birth, postnatal care, and family planning services. Mid-upper arm circumference, hemoglobin by color scale, and Plasmodium falciparum parasitemia by rapid diagnostic dipstick were measured. Exposure to human rights violations in the prior 12 mo was recorded. Between September 2006 and January 2007, 2,914 surveys were conducted. Eighty-eight percent of women reported a home delivery for their last pregnancy (within previous 5 y). Skilled attendance at birth (5.1%), any (39.3%) or ≥ 4 (16.7%) antenatal visits, use of an insecticide-treated bed net (21.6%), and receipt of iron supplements (11.8%) were low. At the time of the survey, more than 60% of women had hemoglobin level estimates ≤ 11.0 g/dl and 7.2% were Pf positive. Unmet need for contraceptives exceeded 60%. Violations of rights were widely reported: 32.1% of Karenni households reported forced labor and 10% of Karen households had been forced to move. Among Karen households, odds of anemia were 1.51 (95% confidence interval [CI] 0.95–2.40) times higher among women reporting forced displacement, and 7.47 (95% CI 2.21–25.3) higher among those exposed to food security violations. The odds of receiving no antenatal care services were 5.94 (95% CI 2.23–15.8) times higher among those forcibly displaced.
Conclusions
Coverage of basic maternal health interventions is woefully inadequate in these selected populations and substantially lower than even the national estimates for Burma, among the lowest in the region. Considerable political, financial, and human resources are necessary to improve access to maternal health care in these communities.
Luke Mullany and colleagues examine access to essential maternal health interventions and human rights violations within vulnerable communities in eastern Burma.
Editors' Summary
Background.
After decades of military rule, Burma has one of the world's worst health-care systems and high levels of ill health. For example, maternal mortality (deaths among women from pregnancy-related causes) is around 360 per 100,000 live births in Burma, whereas in neighboring Thailand it is only 44 per 100,000 live births. Maternal health is even worse in the Shan, Karenni, Karen and Mon states in eastern Burma where ethnic conflicts and enforced village relocations have internally displaced more than half a million people. Here, maternal mortality is thought to be about 1000 per 100, 000 live births. In an effort to improve access to life-saving maternal health interventions in these states, Burmese community-based health organizations, the Johns Hopkins Center for Public Health and Human Rights and the Global Health Access Program in the USA, and the Mae Tao Clinic (a health-worker training center in Thailand) recently set up the Mobile Obstetric Maternal Health Workers (MOM) Project. In this pilot project, local health workers from 12 communities in eastern Burma received training in antenatal care, emergency obstetrics (the care of women during childbirth), blood transfusion, and family planning at the Mae Tao Clinic. Back in Burma, these maternal health workers trained additional local health workers and traditional birth attendants. All these individuals now provide maternal health care to their communities.
Why Was This Study Done?
The effectiveness of the MOM project can only be evaluated if accurate baseline information on women's access to maternal health-care services is available. This information is also needed to ensure the wise use of scarce health-care resources. However, very little is known about reproductive and maternal health in eastern Burma. In this study, the researchers analyze the information on women's access to reproductive and maternal health-care services that was collected during the initial field implementation stage of the MOM project. In addition, they analyze whether exposure to enforced village relocations and other human rights violations affect access to maternal health-care services.
What Did the Researchers Do and Find?
Trained survey workers asked nearly 3000 ever-married women of reproductive age in the selected communities about their access to antenatal and postnatal care, skilled birth attendants, and family planning. They measured each woman's mid-upper arm circumference (an indicator of nutritional status) and tested them for anemia (iron deficiency) and infection with malaria parasites (a common cause of anemia in tropical countries). Finally, they asked the women about any recent violations of their human rights such as forced labour or relocation. Nearly 90% of the women reported a home delivery for their last baby. A skilled attendant was present at only one in 20 births and only one in three women had any antenatal care. One third of the women received postnatal care and only a third said they had access to effective contraceptives. Few women had received iron supplements or had used insecticide-treated bednets to avoid malaria-carrying mosquitos. Consequently, more than half the women were anemic and 7.2% were infected with malaria parasites. Many women also showed signs of poor nutrition. Finally, human rights violations were widely reported by the women. In Karen, the region containing most of the study communities, forced relocation tripled the risk of women developing anemia and greatly decreased their chances of receiving any antenatal care.
What Do These Findings Mean?
These findings show that access to maternal health-care interventions is extremely limited and that poor nutrition, anemia, and malaria, all of which increase the risk of pregnancy complications, are widespread in the communities in the MOM project. Because these communities had some basic health services and access to training in Thailand before the project started, these results probably underestimate the lack of access to maternal health-care services in eastern Burma. Nevertheless, it is clear that considerable political, financial, and human resources will be needed to improve maternal health in this region. Finally, the findings also reveal a link between human rights violations and reduced access to maternal health-care services. Thus, the scale of human rights violations will need to be considered when evaluating programs designed to improve maternal health in Burma and in other places where there is ongoing conflict.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.0050242.
This research article is further discussed in a PLoS Medicine Perspective by Macaya Douoguih
The World Health Organization provides information on all aspects of health in Burma (in several languages)
The Mae Tao Clinic also provides general information about Burma and its health services
More information about the MOM project is available in a previous publication by the researchers
The Burma Campaign UK and Human Rights Watch both provide detailed information about human rights violations in Burma
The United Nations Population Fund provides information about safe motherhood and ongoing efforts to save mothers' lives around the world
doi:10.1371/journal.pmed.0050242
PMCID: PMC2605890  PMID: 19108601
8.  e-Health, m-Health and healthier social media reform: the big scale view 
Introduction
In the upcoming decade, digital platforms will be the backbone of a strategic revolution in the way medical services are provided, affecting both healthcare providers and patients. Digital-based patient-centered healthcare services allow patients to actively participate in managing their own care, in times of health as well as illness, using personally tailored interactive tools. Such empowerment is expected to increase patients’ willingness to adopt actions and lifestyles that promote health as well as improve follow-up and compliance with treatment in cases of chronic illness. Clalit Health Services (CHS) is the largest HMO in Israel and second largest world-wide. Through its 14 hospitals, 1300 primary and specialized clinics, and 650 pharmacies, CHS provides comprehensive medical care to the majority of Israel’s population (above 4 million members). CHS e-Health wing focuses on deepening patient involvement in managing health, through personalized digital interactive tools. Currently, CHS e-Health wing provides e-health services for 1.56 million unique patients monthly with 2.4 million interactions every month (August 2011). Successful implementation of e-Health solutions is not a sum of technology, innovation and health; rather it’s the expertise of tailoring knowledge and leadership capabilities in multidisciplinary areas: clinical, ethical, psychological, legal, comprehension of patient and medical team engagement etc. The Google Health case excellently demonstrates this point. On the other hand, our success with CHS is a demonstration that e-Health can be enrolled effectively and fast with huge benefits for both patients and medical teams, and with a robust business model.
CHS e-Health core components
They include:
1. The personal health record layer (what the patient can see) presents patients with their own medical history as well as the medical history of their preadult children, including diagnoses, allergies, vaccinations, laboratory results with interpretations in layman’s terms, medications with clear, straightforward explanations regarding dosing instructions, important side effects, contraindications, such as lactation etc., and other important medical information. All personal e-Health services require identification and authorization.
2. The personal knowledge layer (what the patient should know) presents patients with personally tailored recommendations for preventative medicine and health promotion. For example, diabetic patients are push notified regarding their yearly eye exam. The various health recommendations include: occult blood testing, mammography, lipid profile etc. Each recommendation contains textual, visual and interactive content components in order to promote engagement and motivate the patient to actually change his health behaviour.
3. The personal health services layer (what the patient can do) enables patients to schedule clinic visits, order chronic prescriptions, e-consult their physician via secured e-mail, set SMS medication reminders, e-consult a pharmacist regarding personal medications. Consultants’ answers are sent securely to the patients’ personal mobile device.
On December 2009 CHS launched secured, web based, synchronous medical consultation via video conference. Currently 11,780 e-visits are performed monthly (May 2011). The medical encounter includes e-prescription and referral capabilities which are biometrically signed by the physician. On December 2010 CHS launched a unique mobile health platform, which is one of the most comprehensive personal m-Health applications world-wide. An essential advantage of mobile devices is their potential to bridge the digital divide. Currently, CHS m-Health platform is used by more than 45,000 unique users, with 75,000 laboratory results views/month, 1100 m-consultations/month and 9000 physician visit scheduling/month.
4. The Bio-Sensing layer (what physiological data the patient can populate) includes diagnostic means that allow remote physical examination, bio-sensors that broadcast various physiological measurements, and smart homecare devices, such as e-Pill boxes that gives seniors, patients and their caregivers the ability to stay at home and live life to its fullest. Monitored data is automatically transmitted to the patient’s Personal Health Record and to relevant medical personnel.
The monitoring layer is embedded in the chronic disease management platform, and in the interactive health promotion and wellness platform. It includes tailoring of consumer-oriented medical devices and service provided by various professional personnel—physicians, nurses, pharmacists, dieticians and more.
5. The Social layer (what the patient can share). Social media networks triggered an essential change at the humanity ‘genome’ level, yet to be further defined in the upcoming years. Social media has huge potential in promoting health as it combines fun, simple yet extraordinary user experience, and bio-social-feedback. There are two major challenges in leveraging health care through social networks:
a. Our personal health information is the cornerstone for personalizing healthier lifestyle, disease management and preventative medicine. We naturally see our personal health data as a super-private territory. So, how do we bring the power of our private health information, currently locked within our Personal Health Record, into social media networks without offending basic privacy issues?
b. Disease management and preventive medicine are currently neither considered ‘cool’ nor ‘fun’ or ‘potentially highly viral’ activities; yet, health is a major issue of everybody’s life. It seems like we are missing a crucial element with a huge potential in health behavioural change—the Fun Theory. Social media platforms comprehends user experience tools that potentially could break current misconception, and engage people in the daily task of taking better care of themselves.
CHS e-Health innovation team characterized several break-through applications in this unexplored territory within social media networks, fusing personal health and social media platforms without offending privacy. One of the most crucial issues regarding adoption of e-health and m-health platforms is change management. Being a ‘hot’ innovative ‘gadget’ is far from sufficient for changing health behaviours at the individual and population levels.
CHS health behaviour change management methodology includes 4 core elements:
1. Engaging two completely different populations: patients, and medical teams. e-Health applications must present true added value for both medical teams and patients, engaging them through understanding and assimilating “what’s really in it for me”. Medical teams are further subdivided into physicians, nurses, pharmacists and administrative personnel—each with their own driving incentive. Resistance to change is an obstacle in many fields but it is particularly true in the conservative health industry. To successfully manage a large scale persuasive process, we treat intra-organizational human resources as “Change Agents”. Harnessing the persuasive power of ~40,000 employees requires engaging them as the primary target group. Successful recruitment has the potential of converting each patient-medical team interaction into an exposure opportunity to the new era of participatory medicine via e-health and m-health channels.
2. Implementation waves: every group of digital health products that are released at the same time are seen as one project. Each implementation wave leverages the focus of the organization and target populations to a defined time span. There are three major and three minor implementation waves a year.
3. Change-Support Arrow: a structured infrastructure for every implementation wave. The sub-stages in this strategy include:
Cross organizational mapping and identification of early adopters and stakeholders relevant to the implementation wave
Mapping positive or negative perceptions and designing specific marketing approaches for the distinct target groups
Intra and extra organizational marketing
Conducting intensive training and presentation sessions for groups of implementers
Running conflict-prevention activities, such as advanced tackling of potential union resistance
Training change-agents with resistance-management behavioural techniques, focused intervention for specific incidents and for key opinion leaders
Extensive presence in the clinics during the launch period, etc.
The entire process is monitored and managed continuously by a review team.
4. Closing Phase: each wave is analyzed and a “lessons-learned” session concludes the changes required in the modus operandi of the e-health project team.
PMCID: PMC3571141
e-Health; mobile health; personal health record; online visit; patient empowerment; knowledge prescription
9.  Decision-making and evidence use during the process of prenatal record review in Canada: a multiphase qualitative study 
Background
Prenatal records are potentially powerful tools for the translation of best-practice evidence into routine prenatal care. Although all jurisdictions in Canada use standardized prenatal records to guide care and provide data for health surveillance, their content related to risk factors such as maternal smoking and alcohol use varies widely. Literature is lacking on how prenatal records are developed or updated to integrate research evidence. This multiphase project aimed to identify key contextual factors influencing decision-making and evidence use among Canadian prenatal record committees (PRCs), and formulate recommendations for the prenatal record review process in Canada.
Methods
Phase 1 comprised key informant interviews with PRC leaders across 10 Canadian jurisdictions. Phase 2, was a qualitative comparative case study of PRC factors influencing evidence-use and decision-making in five selected jurisdictions. Interview data were analysed using qualitative content analysis. Phase 3 involved a dissemination workshop with key stakeholders to review and refine recommendations derived from Phases 1 and 2.
Results
Prenatal record review processes differed considerably across Canadian jurisdictions. PRC decision-making was complex, revealing the competing functions of the prenatal record as a clinical guide, documentation tool and data source. Internal contextual factors influencing evidence use included PRC resources to conduct evidence reviews; group composition and dynamics; perceived function of the prenatal record; and expert opinions. External contextual factors included concerns about user buy-in; health system capacities; and pressures from public health stakeholders. Our recommendations highlight the need for: broader stakeholder involvement and explicit use of decision-support strategies to support the revision process; a national template of evidence-informed changes that can be used across jurisdictions; consideration of both clinical and surveillance functions of the prenatal record; and dissemination plans to communicate prenatal record modifications.
Conclusions
Decision-making related to prenatal record content involves a negotiated effort to balance research evidence with the needs and preferences of prenatal care providers, health system capacities as well as population health priorities. The development of a national template for prenatal records would reduce unnecessary duplication of PRC work and enhance the consistency of prenatal care delivery and perinatal surveillance data across Canada.
doi:10.1186/s12884-015-0503-6
PMCID: PMC4389923  PMID: 25881034
Prenatal care, Prenatal records, Guidelines, Evidence utilization, Decision-making, Context, Population health; Prenatal smoking; Prenatal alcohol use
10.  Second generation registry framework 
Background
Information management systems are essential to capture data be it for public health and human disease, sustainable agriculture, or plant and animal biosecurity. In public health, the term patient registry is often used to describe information management systems that are used to record and track phenotypic data of patients. Appropriate design, implementation and deployment of patient registries enables rapid decision making and ongoing data mining ultimately leading to improved patient outcomes. A major bottleneck encountered is the static nature of these registries. That is, software developers are required to work with stakeholders to determine requirements, design the system, implement the required data fields and functionality for each patient registry. Additionally, software developer time is required for ongoing maintenance and customisation. It is desirable to deploy a sophisticated registry framework that can allow scientists and registry curators possessing standard computing skills to dynamically construct a complete patient registry from scratch and customise it for their specific needs with little or no need to engage a software developer at any stage.
Results
This paper introduces our second generation open source registry framework which builds on our previous rare disease registry framework (RDRF). This second generation RDRF is a new approach as it empowers registry administrators to construct one or more patient registries without software developer effort. New data elements for a diverse range of phenotypic and genotypic measurements can be defined at any time. Defined data elements can then be utilised in any of the created registries. Fine grained, multi-level user and workgroup access can be applied to each data element to ensure appropriate access and data privacy. We introduce the concept of derived data elements to assist the data element standards communities on how they might be best categorised.
Conclusions
We introduce the second generation RDRF that enables the user-driven dynamic creation of patient registries. We believe this second generation RDRF is a novel approach to patient registry design, implementation and deployment and a significant advance on existing registry systems.
doi:10.1186/1751-0473-9-14
PMCID: PMC4075501  PMID: 24982690
Patient registry; Born digital; Data element; Genotype; Phenotype; Ontology
11.  Natural Language Processing and the Oncologic History: Is There a Match? 
Journal of Oncology Practice  2011;7(4):e15-e19.
The widespread adoption of electronic health records within the oncology community is creating rich databases that contain details of the cancer care continuum. Large portions of this information are locked up in free text, but several efforts are underway to address this.
Purpose:
The widespread adoption of electronic health records (EHRs) is creating rich databases documenting the cancer patient's care continuum. However, much of this data, especially narrative “oncologic histories,” are “locked” within free text (unstructured) portions of notes. Nationwide incentives, ranging from certification (Quality Oncology Practice Initiative) to monetary reimbursement (the Health Information Technology for Economic and Clinical Health Act), increasingly require the translation of these histories into treatment summaries for patient use and into tools to assist in transitions of care. Unfortunately, formulation of treatment summaries from these data is difficult and time-consuming. The rapidly developing field of automated natural language processing may offer a solution to this communication problem.
Methods:
We surveyed a cross section of providers at Beth Israel Deaconess Medical Center regarding the importance of treatment summaries and whether these were being formulated on a regular basis. We also developed a program for the Informatics for Integrating Biology and the Bedside challenge, which was designed to extract meaningful information from EHRs. The program was then applied to a sample of narrative oncologic histories.
Results:
The majority of providers (86%) felt that treatment summaries were important, but only 11% actually implemented them. The most common obstacles identified were lack of time and lack of EHR tools. We demonstrated that relevant medical concepts can be automatically extracted from oncologic histories with reasonable accuracy and precision.
Conclusion:
Natural language processing technology offers a promising method for structuring a free-text oncologic history into a compact treatment summary, creating a robust and accurate means of communication between providers and between provider and patient.
doi:10.1200/JOP.2011.000240
PMCID: PMC3140455  PMID: 22043196
12.  A Health Department’s Collaborative Model for Disease Surveillance Capacity Building 
Objective
Highlight one academic health department’s unique approach to optimizing collaborative opportunities for capacity development and document the implications for chronic disease surveillance and population health.
Introduction
Public Health departments are increasingly called upon to be innovative in quality service delivery under a dwindling resource climate as highlighted in several publications of the Institute of Medicine. Collaboration with other entities in the delivery of core public health services has emerged as a recurring theme. One model of this collaboration is an academic health department: a formal affiliation between a health professions school and a local health department. Initially targeted at workforce development, this model of collaboration has since yielded dividends in other core public health service areas including community assessment, program evaluation, community-based participatory research and data analysis.
The Duval County Health Department (DCHD), Florida, presents a unique community-centered model of the academic health department. Prominence in local informatics infrastructure capacity building and hosting a CDC-CSTE applied public health informatics fellowship (APHIF) in the Institute for Public Health Informatics and Research (IPHIR) in partnership with the Center for Health Equity Research, University of Florida & Shands medical center are direct dividends of this collaborative model.
Methods
We examined the collaborative efforts of the DCHD and present the unique advantages these have brought in the areas of entrenched data-driven public health service culture, community assessments, program evaluation, community-based participatory research and health informatics projects.
Results
Advantages of the model include a data-driven culture with the balanced scorecard model in leadership and sub-departmental emphases on quality assurance in public health services. Activities in IPHIR include data-driven approaches to program planning and grant developments, program evaluations, data analyses and impact assessments for the DCHD and other community health stakeholders.
Reports developed by IPHIR have impacted policy formulation by highlighting the need for sub county level data differentiation to address health disparities. Unique community-based mapping of Duval County into health zones based on health risk factors correlating with health outcome measures have been published. Other reports highlight chronic disease surveillance data and health scorecards in special populations.
Partnerships with regional higher institutions (University of Florida, University of North Florida and Florida A&M University) increased public health service delivery and yielded rich community-based participatory research opportunities.
Cutting edge participation in health IT policy implementation led to the hosting of the fledgling community HIE, the Jacksonville Health Information Network, as well as leadership in shaping the landscape of the state HIE. This has immense implications for public health surveillance activities as chronic disease surveillance and public health service research take center stage under new healthcare payment models amidst increasing calls for quality assurance in public health services.
DCHD is currently hosting a CDC-funded fellowship in applied public health informatics. Some of the projects materializing from the fellowship are the mapping of the current public health informatics profile of the DCHD, a community based diabetes disease registry to aid population-based management and surveillance of diabetes, development of a proposal for a combined primary care/general preventive medicine residency in UF-Shands Medical Center, Jacksonville and mobilization of DCHD healthcare providers for the roll-out of the state-built electronic medical records system (Florida HMS-EHR).
Conclusions
Academic health centers provide a model of collaboration that directly impacts on their success in delivering core public health services. Disease surveillance is positively affected by the diverse community affiliations of an academic health department. The academic health department, as epitomized by DCHD, is also better positioned to seize up-coming opportunities for local public health capacity building.
PMCID: PMC3692891
Academic Health Departments; collaborative model; health informatics projects
13.  The Impact of eHealth on the Quality and Safety of Health Care: A Systematic Overview 
PLoS Medicine  2011;8(1):e1000387.
Aziz Sheikh and colleagues report the findings of their systematic overview that assessed the impact of eHealth solutions on the quality and safety of health care.
Background
There is considerable international interest in exploiting the potential of digital solutions to enhance the quality and safety of health care. Implementations of transformative eHealth technologies are underway globally, often at very considerable cost. In order to assess the impact of eHealth solutions on the quality and safety of health care, and to inform policy decisions on eHealth deployments, we undertook a systematic review of systematic reviews assessing the effectiveness and consequences of various eHealth technologies on the quality and safety of care.
Methods and Findings
We developed novel search strategies, conceptual maps of health care quality, safety, and eHealth interventions, and then systematically identified, scrutinised, and synthesised the systematic review literature. Major biomedical databases were searched to identify systematic reviews published between 1997 and 2010. Related theoretical, methodological, and technical material was also reviewed. We identified 53 systematic reviews that focused on assessing the impact of eHealth interventions on the quality and/or safety of health care and 55 supplementary systematic reviews providing relevant supportive information. This systematic review literature was found to be generally of substandard quality with regards to methodology, reporting, and utility. We thematically categorised eHealth technologies into three main areas: (1) storing, managing, and transmission of data; (2) clinical decision support; and (3) facilitating care from a distance. We found that despite support from policymakers, there was relatively little empirical evidence to substantiate many of the claims made in relation to these technologies. Whether the success of those relatively few solutions identified to improve quality and safety would continue if these were deployed beyond the contexts in which they were originally developed, has yet to be established. Importantly, best practice guidelines in effective development and deployment strategies are lacking.
Conclusions
There is a large gap between the postulated and empirically demonstrated benefits of eHealth technologies. In addition, there is a lack of robust research on the risks of implementing these technologies and their cost-effectiveness has yet to be demonstrated, despite being frequently promoted by policymakers and “techno-enthusiasts” as if this was a given. In the light of the paucity of evidence in relation to improvements in patient outcomes, as well as the lack of evidence on their cost-effectiveness, it is vital that future eHealth technologies are evaluated against a comprehensive set of measures, ideally throughout all stages of the technology's life cycle. Such evaluation should be characterised by careful attention to socio-technical factors to maximise the likelihood of successful implementation and adoption.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
There is considerable international interest in exploiting the potential of digital health care solutions, often referred to as eHealth—the use of information and communication technologies—to enhance the quality and safety of health care. Often accompanied by large costs, any large-scale expenditure on eHealth—such as electronic health records, picture archiving and communication systems, ePrescribing, associated computerized provider order entry systems, and computerized decision support systems—has tended to be justified on the grounds that these are efficient and cost-effective means for improving health care. In 2005, the World Health Assembly passed an eHealth resolution (WHA 58.28) that acknowledged, “eHealth is the cost-effective and secure use of information and communications technologies in support of health and health-related fields, including health-care services, health surveillance, health literature, and health education, knowledge and research,” and urged member states to develop and implement eHealth technologies. Since then, implementing eHealth technologies has become a main priority for many countries. For example, England has invested at least £12.8 billion in a National Programme for Information Technology for the National Health Service, and the Obama administration in the United States has committed to a US$38 billion eHealth investment in health care.
Why Was This Study Done?
Despite the wide endorsement of and support for eHealth, the scientific basis of its benefits—which are repeatedly made and often uncritically accepted—remains to be firmly established. A robust evidence-based perspective on the advantages on eHealth could help to suggest priority areas that have the greatest potential for benefit to patients and also to inform international eHealth deliberations on costs. Therefore, in order to better inform the international community, the authors systematically reviewed the published systematic review literature on eHealth technologies and evaluated the impact of these technologies on the quality and safety of health care delivery.
What Did the Researchers Do and Find?
The researchers divided eHealth technologies into three main categories: (1) storing, managing, and transmission of data; (2) clinical decision support; and (3) facilitating care from a distance. Then, implementing methods based on those developed by the Cochrane Collaboration and the NHS Service Delivery and Organisation Programme, the researchers used detailed search strategies and maps of health care quality, safety, and eHealth interventions to identify relevant systematic reviews (and related theoretical, methodological, and technical material) published between 1997 and 2010. Using these techniques, the researchers retrieved a total of 46,349 references from which they identified 108 reviews. The 53 reviews that the researchers finally selected (and critically reviewed) provided the main evidence base for assessing the impact of eHealth technologies in the three categories selected.
In their systematic review of systematic reviews, the researchers included electronic health records and picture archiving communications systems in their evaluation of category 1, computerized provider (or physician) order entry and e-prescribing in category 2, and all clinical information systems that, when used in the context of eHealth technologies, integrate clinical and demographic patient information to support clinician decision making in category 3.
The researchers found that many of the clinical claims made about the most commonly used eHealth technologies were not substantiated by empirical evidence. The evidence base in support of eHealth technologies was weak and inconsistent and importantly, there was insubstantial evidence to support the cost-effectiveness of these technologies. For example, the researchers only found limited evidence that some of the many presumed benefits could be realized; importantly, they also found some evidence that introducing these new technologies may on occasions also generate new risks such as prescribers becoming over-reliant on clinical decision support for e-prescribing, or overestimate its functionality, resulting in decreased practitioner performance.
What Do These Findings Mean?
The researchers found that despite the wide support for eHealth technologies and the frequently made claims by policy makers when constructing business cases to raise funds for large-scale eHealth projects, there is as yet relatively little empirical evidence to substantiate many of the claims made about eHealth technologies. In addition, even for the eHealth technology tools that have proven to be successful, there is little evidence to show that such tools would continue to be successful beyond the contexts in which they were originally developed. Therefore, in light of the lack of evidence in relation to improvements in patient outcomes, as well as the lack of evidence on their cost-effectiveness, the authors say that future eHealth technologies should be evaluated against a comprehensive set of measures, ideally throughout all stages of the technology's life cycle, and include socio-technical factors to maximize the likelihood of successful implementation and adoption in a given context. Furthermore, it is equally important that eHealth projects that have already been commissioned are subject to rigorous, multidisciplinary, and independent evaluation.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000387.
The authors' broader study is: Car J, Black A, Anandan C, Cresswell K, Pagliari C, McKinstry B, et al. (2008) The Impact of eHealth on the Quality and Safety of Healthcare. Available at: http://www.haps.bham.ac.uk/publichealth/cfhep/001.shtml
More information is available on the World Health Assembly eHealth resolution
The World Health Organization provides information at the Global Observatory on eHealth, as well as a global insight into eHealth developments
The European Commission provides Information on eHealth in Europe and some examples of good eHealth practice
More information is provided on NHS Connecting for Health
doi:10.1371/journal.pmed.1000387
PMCID: PMC3022523  PMID: 21267058
14.  Benefits and problems of electronic information exchange as perceived by health care professionals: an interview study 
Background
Various countries are currently implementing a national electronic patient record (n-EPR). Despite the assumed positive effects of n-EPRs, their overall adoption remains low and meets resistance from health care providers. This study aims to increase our understanding of health care providers' attitude towards the n-EPR, by investigating their perceptions of the benefits and problems of electronic information exchange in health care and the n-EPR in particular.
Methods
The study was conducted in three Dutch health care settings: acute care, diabetes care, and ambulatory mental health care. Two health care organisations were included per setting. Between January and June 2010, interviews were conducted with 17 stakeholders working in these organisations. Relevant themes were deduced by means of thematic qualitative analysis.
Results
Health care providers perceived electronic information exchange to promote the efficiency and quality of care. The problems they perceived in electronic information exchange mainly concerned the confidentiality and safety of information exchange and the reliability and quality of patient data. Many problems perceived by health care providers did not specifically apply to the n-EPR, but to electronic information exchange in general.
Conclusions
The implementation of the Dutch n-EPR has mainly followed a top-down approach, thereby neglecting the fact that the perceptions and preferences of its users (health care providers) need to be addressed in order to achieve successful implementation. The results of this study provide valuable suggestions about how to promote health care providers' willingness to adopt electronic information exchange, which can be useful for other countries currently implementing an n-EPR. Apart from providing information about the benefits and usefulness of electronic information exchange, efforts should be focused on minimising the problems as perceived by health care providers. The safety and confidentiality of electronic information exchange can be improved by developing tools to evaluate the legitimacy of access to electronic records, by increasing health care providers' awareness of the need to be careful when using patient data, and by measures to limit access to sensitive patient data. Improving health care providers' recording behaviour is important to improve the reliability and quality of electronically exchanged patient data.
doi:10.1186/1472-6963-11-256
PMCID: PMC3200179  PMID: 21982395
15.  Personal Health Management (PHM): Singapore’s national strategy to activate and empower patients and care givers through innovative personal health technologies 
Introduction
In the next two decades, Singapore will face a near-perfect demographic and chronic disease-burden “storm”. Rising public expectations of healthcare services, inflationary cost pressures and continuous resource scarcity add to the challenges the system faces. Singapore’s Ministry of Health’s (MOH) response to these impending challenges has been swift and reforms are under way that will lead to new models of care, integrated care delivery capabilities as well as increased capacity (through development of primary care and new facilities) in light of growing demands. The national Personal Health Management (PHM) strategy adds another dimension to Singapore’s national reforms, which is to leverage on one of the greatest untapped resources of healthcare: people, their families and communities.
Aims and objectives
At the core of PHM is self-management and Singapore’s continuous promotion of personal responsibility. To support self-management, there is a need to provide patients/people with access to timely, actionable health information—key ingredients of empowerment that leads to greater self-efficacy. Instead of the traditional approach of developing a “static” patient portal, Singapore is taking a unique approach of developing an “open” health technology platform capable of catering to diverse stakeholder needs, and one that allow healthcare providers, enterprises, interest groups to create and build web, mobile applications and interactive content on a common platform to support existing and new healthcare programmes and services. At the crux of the platform is personal health record which is a subset of the just launched, national electronic health record (NEHR) that provides a longitudinal view of the person’s health information generated through life-time encounters at various care settings. The development of a national demonstrator PHM project is underway, slated for launch in early Q2 2012 with participation of two regional healthcare providers aimed at providing self-management technology tools (web and mobile) for low-medium risk diabetic patients. This paper/presentation aims to outline and share Singapore’s approach to empowering patients through the national strategy, barriers and its implementation thus far and roadmap going forward.
Results
It is too early to be able to provide measureable outcomes in particular, clinical outcomes until steady-state is achieved beyond 2012. PHM is a large transformational project where the challenge goes beyond just the implementation of the technology. This is largely due to how the healthcare system is structured and financed in Singapore. The development of the national strategy has been a significant milestone; in that it has galvanised an otherwise disparate approach to self-management that will result in siloed patient information and duplication of efforts. The strategy has garnered senior leadership support from the ministry and stakeholder commitment to collaborate on the platform was a major step forward.
Conclusion
The PHM strategy is the start of an exciting journey to enable a transformation of Singapore’s healthcare system that truly puts the person in the driver’s seat of their own health. The realisation of the PHM vision will take 10 years and development will be in 3 phases starting in 2011. The successful execution of the strategy relies on close coordination and cooperation among its stakeholders. The proposed “open platform” approach recognises that there will not be a one-size-fit-all solution and that diversity will be an added strength.
PMCID: PMC3571167
self management; strategy; policy; mhealth; telehealth
16.  Implementation of an integrated preoperative care pathway and regional electronic clinical portal for preoperative assessment 
Background
Effective surgical pre-assessment will depend upon the collection of relevant medical information, good data management and communication between the members of the preoperative multi-disciplinary team. NHS Greater Glasgow and Clyde has implemented an electronic preoperative integrated care pathway (eForm) allowing all hospitals to access a comprehensive patient medical history via a clinical portal on the health-board intranet.
Methods
We conducted six face-to-face semi-structured interviews and participated in one focus group and two workshops with key stakeholders involved in the Planned Care Improvement (PCIP) and Electronic Patient Record programmes. We used qualitative methods and Normalisation Process Theory in order to identify the key factors which led to the successful deployment of the preoperative eForm in the health-board.
Results
In January 2013, more than 90,000 patient preoperative assessments had been completed via the electronic portal. Two complementary strategic efforts were instrumental in the successful deployment of the preoperative eForm. At the local health-board level: the PCIP led to the rationalisation of surgical pre-assessment clinics and the standardisation of preoperative processes. At the national level: the eHealth programme selected portal technology as an iterative strategic technology solution towards a virtual electronic patient record. Our study has highlighted clear synergies between these two standardisation efforts.
Conclusion
The adoption of the eForm into routine preoperative work practices can be attributed to: (i) a policy context – including performance targets – promoting the rationalisation of surgical pre-assessment pathways, (ii) financial and organisational resources to support service redesign and the use of information technology for operationalising the standardisation of preoperative processes, (iii) a sustained engagement with stakeholders throughout the iterative phases of the preoperative clinics redesign, guidelines standardisation and the eForm development, (iv) the use of a pragmatic and domain-agnostic technology solution and finally: (v) a consensual and contextualised implementation.
Electronic supplementary material
The online version of this article (doi:10.1186/1472-6947-14-93) contains supplementary material, which is available to authorized users.
doi:10.1186/1472-6947-14-93
PMCID: PMC4289251  PMID: 25407812
(Mesh); Medical informatics applications; Information systems; Integrated advanced information management systems
17.  Facilitating the Recruitment of Minority Ethnic People into Research: Qualitative Case Study of South Asians and Asthma 
PLoS Medicine  2009;6(10):e1000148.
Aziz Sheikh and colleagues report on a qualitative study in the US and the UK to investigate ways to bolster recruitment of South Asians into asthma studies, including making inclusion of diverse populations mandatory.
Background
There is international interest in enhancing recruitment of minority ethnic people into research, particularly in disease areas with substantial ethnic inequalities. A recent systematic review and meta-analysis found that UK South Asians are at three times increased risk of hospitalisation for asthma when compared to white Europeans. US asthma trials are far more likely to report enrolling minority ethnic people into studies than those conducted in Europe. We investigated approaches to bolster recruitment of South Asians into UK asthma studies through qualitative research with US and UK researchers, and UK community leaders.
Methods and Findings
Interviews were conducted with 36 researchers (19 UK and 17 US) from diverse disciplinary backgrounds and ten community leaders from a range of ethnic, religious, and linguistic backgrounds, followed by self-completion questionnaires. Interviews were digitally recorded, translated where necessary, and transcribed. The Framework approach was used for analysis. Barriers to ethnic minority participation revolved around five key themes: (i) researchers' own attitudes, which ranged from empathy to antipathy to (in a minority of cases) misgivings about the scientific importance of the question under study; (ii) stereotypes and prejudices about the difficulties in engaging with minority ethnic populations; (iii) the logistical challenges posed by language, cultural differences, and research costs set against the need to demonstrate value for money; (iv) the unique contexts of the two countries; and (v) poorly developed understanding amongst some minority ethnic leaders of what research entails and aims to achieve. US researchers were considerably more positive than their UK counterparts about the importance and logistics of including ethnic minorities, which appeared to a large extent to reflect the longer-term impact of the National Institutes of Health's requirement to include minority ethnic people.
Conclusions
Most researchers and community leaders view the broadening of participation in research as important and are reasonably optimistic about the feasibility of recruiting South Asians into asthma studies provided that the barriers can be overcome. Suggested strategies for improving recruitment in the UK included a considerably improved support structure to provide academics with essential contextual information (e.g., languages of particular importance and contact with local gatekeepers), and the need to ensure that care is taken to engage with the minority ethnic communities in ways that are both culturally appropriate and sustainable; ensuring reciprocal benefits was seen as one key way of avoiding gatekeeper fatigue. Although voluntary measures to encourage researchers may have some impact, greater impact might be achieved if UK funding bodies followed the lead of the US National Institutes of Health requiring recruitment of ethnic minorities. Such a move is, however, likely in the short- to medium-term, to prove unpopular with many UK academics because of the added “hassle” factor in engaging with more diverse populations than many have hitherto been accustomed to.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
In an ideal world, everyone would have the same access to health care and the same health outcomes (responses to health interventions). However, health inequalities—gaps in health care and in health between different parts of the population—exist in many countries. In particular, people belonging to ethnic minorities in the UK, the US, and elsewhere have poorer health outcomes for several conditions than people belonging to the ethnic majority (ethnicity is defined by social characteristics such as cultural tradition or national origin). For example, in the UK, people whose ancestors came from the Indian subcontinent (also known as South Asians and comprising in the main of people of Indian, Pakistani, and Bangladeshi origin) are three times as likely to be admitted to hospital for asthma as white Europeans. The reasons underpinning ethnic health inequalities are complex. Some inequalities may reflect intrinsic differences between groups of people—some ethnic minorities may inherit genes that alter their susceptibility to a specific disease. Other ethnic health inequalities may arise because of differences in socioeconomic status or because different cultural traditions affect the uptake of health care services.
Why Was This Study Done?
Minority ethnic groups are often under-represented in health research, which could limit the generalizability of research findings. That is, an asthma treatment that works well in a trial where all the participants are white Europeans might not be suitable for South Asians. Clinicians might nevertheless use the treatment in all their patients irrespective of their ethnicity and thus inadvertently increase ethnic health inequality. So, how can ethnic minorities be encouraged to enroll into research studies? In this qualitative study, the investigators try to answer this question by talking to US and UK asthma researchers and UK community leaders about how they feel about enrolling ethnic minorities into research studies. The investigators chose to compare the feelings of US and UK asthma researchers because minority ethnic people are more likely to enroll into US asthma studies than into UK studies, possibly because the US National Institute of Health's (NIH) Revitalization Act 1993 mandates that all NIH-funded clinical research must include people from ethnic minority groups; there is no similar mandatory policy in the UK.
What Did the Researchers Do and Find?
The investigators interviewed 16 UK and 17 US asthma researchers and three UK social researchers with experience of working with ethnic minorities. They also interviewed ten community leaders from diverse ethnic, religious and linguistic backgrounds. They then analyzed the interviews using the “Framework” approach, an analytical method in which qualitative data are classified and organized according to key themes and then interpreted. By comparing the data from the UK and US researchers, the investigators identified several barriers to ethnic minority participation in health research including: the attitudes of researchers towards the scientific importance of recruiting ethnic minority people into health research studies; prejudices about the difficulties of including ethnic minorities in health research; and the logistical challenges posed by language and cultural differences. In general, the US researchers were more positive than their UK counterparts about the importance and logistics of including ethnic minorities in health research. Finally, the investigators found that some community leaders had a poor understanding of what research entails and about its aims.
What Do These Findings Mean?
These findings reveal a large gap between US and UK researchers in terms of policy, attitudes, practices, and experiences in relation to including ethnic minorities in asthma research. However, they also suggest that most UK researchers and community leaders believe that it is both important and feasible to increase the participation of South Asians in asthma studies. Although some of these findings may have been affected by the study participants sometimes feeling obliged to give “politically correct” answers, these findings are likely to be generalizable to other diseases and to other parts of Europe. Given their findings, the researchers warn that a voluntary code of practice that encourages the recruitment of ethnic minority people into health research studies is unlikely to be successful. Instead, they suggest, the best way to increase the representation of ethnic minority people in health research in the UK might be to follow the US lead and introduce a policy that requires their inclusion in such research.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000148.
Families USA, a US nonprofit organization that campaigns for high-quality, affordable health care for all Americans, has information about many aspects of minority health in the US, including an interactive game about minority health issues
The US Agency for Healthcare Research and Quality has a section on minority health
The UK Department of Health provides information on health inequalities and a recent report on the experiences of patients in Black and minority ethnic groups
The UK Parliamentary Office of Science and Technology also has a short article on ethnicity and health
Information on the NIH Revitalization Act 1993 is available
NHS Evidences Ethnicity and Health has a variety of policy, clinical, and research resources on ethnicity and health
doi:10.1371/journal.pmed.1000148
PMCID: PMC2752116  PMID: 19823568
18.  Bridging Islands of Information to Establish an Integrated Knowledge Base of Drugs and Health Outcomes of Interest 
Drug Safety  2014;37(8):557-567.
The entire drug safety enterprise has a need to search, retrieve, evaluate, and synthesize scientific evidence more efficiently. This discovery and synthesis process would be greatly accelerated through access to a common framework that brings all relevant information sources together within a standardized structure. This presents an opportunity to establish an open-source community effort to develop a global knowledge base, one that brings together and standardizes all available information for all drugs and all health outcomes of interest (HOIs) from all electronic sources pertinent to drug safety. To make this vision a reality, we have established a workgroup within the Observational Health Data Sciences and Informatics (OHDSI, http://ohdsi.org) collaborative. The workgroup’s mission is to develop an open-source standardized knowledge base for the effects of medical products and an efficient procedure for maintaining and expanding it. The knowledge base will make it simpler for practitioners to access, retrieve, and synthesize evidence so that they can reach a rigorous and accurate assessment of causal relationships between a given drug and HOI. Development of the knowledge base will proceed with the measureable goal of supporting an efficient and thorough evidence-based assessment of the effects of 1,000 active ingredients across 100 HOIs. This non-trivial task will result in a high-quality and generally applicable drug safety knowledge base. It will also yield a reference standard of drug–HOI pairs that will enable more advanced methodological research that empirically evaluates the performance of drug safety analysis methods.
doi:10.1007/s40264-014-0189-0
PMCID: PMC4134480  PMID: 24985530
19.  Standardized Cardiovascular Data for Clinical Research, Registries, and Patient Care 
Relatively little attention has been focused on standardization of data exchange in clinical research studies and patient care activities. Both are usually managed locally using separate and generally incompatible data systems at individual hospitals or clinics. In the past decade there have been nascent efforts to create data standards for clinical research and patient care data, and to some extent these are helpful in providing a degree of uniformity. Nevertheless these data standards generally have not been converted into accepted computer-based language structures that could permit reliable data exchange across computer networks. The National Cardiovascular Research Infrastructure (NCRI) project was initiated with a major objective of creating a model framework for standard data exchange in all clinical research, clinical registry, and patient care environments, including all electronic health records. The goal is complete syntactic and semantic interoperability. A Data Standards Workgroup was established to create or identify and then harmonize clinical definitions for a base set of standardized cardiovascular data elements that could be used in this network infrastructure. Recognizing the need for continuity with prior efforts, the Workgroup examined existing data standards sources. A basic set of 353 elements was selected. The NCRI staff then collaborated with the two major technical standards organizations in healthcare, the Clinical Data Interchange Standards Consortium and Health Level 7 International, as well as with staff from the National Cancer Institute Enterprise Vocabulary Services. Modeling and mapping were performed to represent (instantiate) the data elements in appropriate technical computer language structures for endorsement as an accepted data standard for public access and use. Fully implemented, these elements will facilitate clinical research, registry reporting, administrative reporting and regulatory compliance, and patient care.
doi:10.1016/j.jacc.2012.12.047
PMCID: PMC3664644  PMID: 23500238
20.  SMART Platforms: Building the App Store for Biosurveillance 
Objective
To enable public health departments to develop “apps” to run on electronic health records (EHRs) for (1) biosurveillance and case reporting and (2) delivering alerts to the point of care. We describe a novel health information technology platform with substitutable apps constructed around core services enabling EHRs to function as iPhone-like platforms.
Introduction
Health care information is a fundamental source of data for biosurveillance, yet configuring EHRs to report relevant data to health departments is technically challenging, labor intensive, and often requires custom solutions for each installation. Public health agencies wishing to deliver alerts to clinicians also must engage in an endless array of one-off systems integrations.
Despite a $48B investment in HIT, and meaningful use criteria requiring reporting to biosurveillance systems, most vendor electronic health records are architected monolithically, making modification difficult for hospitals and physician practices. An alternative approach is to reimagine EHRs as iPhone-like platforms supporting substitutable apps-based functionality. Substitutability is the capability inherent in a system of replacing one application with another of similar functionality.
Methods
Substitutability requires that the purchaser of an app can replace one application with another without being technically expert, without requiring re-engineering other applications that they are using, and without having to consult or require assistance of any of the vendors of previously installed or currently installed applications. Apps necessarily compete with each other promoting progress and adaptability.
The Substitutable Medical Applications, Reusable Technologies (SMART) Platforms project is funded by a $15M grant from Office of the National Coordinator of Health Information Technology’s Strategic Health IT Advanced Research Projects (SHARP) Program. All SMART standards are open and the core software is open source.
The SMART project promotes substitutability through an application programming interface (API) that can be adopted as part of a “container” built around by a wide variety of HIT, providing readonly access to the underlying data model and a software development toolkit to readily create apps. SMART containers are HIT systems, that have implemented the SMART API or a portion of it. Containers marshal data sources and present them consistently across the SMART API. SMART applications consume the API and are substitutable.
Results
SMART provides a common platform supporting an “app store for biosurveillance” as an approach to enabling one stop shopping for public health departments—to create an app once, and distribute it everywhere.
Further, such apps can be readily updated or created—for example, in the case of an emerging infection, an app may be designed to collect additional data at emergency department triage. Or a public health department may widely distribute an app, interoperable with any SMART-enabled EMR, that delivers contextualized alerts when patient electronic records are opened, or through background processes.
SMART has sparked an ecosystem of apps developers and attracted existing health information technology platforms to adopt the SMART API—including, traditional, open source, and next generation EHRs, patient-facing platforms and health information exchanges. SMART-enabled platforms to date include the Cerner EMR, the WorldVista EHR, the OpenMRS EHR, the i2b2 analytic platform, and the Indivo X personal health record. The SMART team is working with the Mirth Corporation, to SMART-enable the HealthBridge and Redwood MedNet Health Information Exchanges. We have demonstrated that a single SMART app can run, unmodified, in all of these environments, as long as the underlying platform collects the required data types. Major EHR vendors are currently adapting the SMART API for their products.
Conclusions
The SMART system enables nimble customization of any electronic health record system to create either a reporting function (outgoing communication) or an alerting function (incoming communication) establishing a technology for a robust linkage between public health and clinical environments.
PMCID: PMC3692876
Electronic health records; Biosurveillance; Informatics; Application Programming Interfaces
21.  Electronic Tools for Health Information Exchange 
Background
As patients experience transitions in care, there is a need to share information between care providers in an accurate and timely manner. With the push towards electronic medical records and other electronic tools (eTools) (and away from paper-based health records) for health information exchange, there remains uncertainty around the impact of eTools as a form of communication.
Objective
To examine the impact of eTools for health information exchange in the context of care coordination for individuals with chronic disease in the community.
Data Sources
A literature search was performed on April 26, 2012, using OVID MEDLINE, OVID MEDLINE In-Process and Other Non-Indexed Citations, OVID EMBASE, EBSCO Cumulative Index to Nursing & Allied Health Literature (CINAHL), the Wiley Cochrane Library, and the Centre for Reviews and Dissemination database, for studies published until April 26, 2012 (no start date limit was applied).
Review Methods
A systematic literature search was conducted, and meta-analysis conducted where appropriate. Outcomes of interest fell into 4 categories: health services utilization, disease-specific clinical outcomes, process-of-care indicators, and measures of efficiency. The quality of the evidence was assessed individually for each outcome. Expert panels were assembled for stakeholder engagement and contextualization.
Results
Eleven articles were identified (4 randomized controlled trials and 7 observational studies). There was moderate quality evidence of a reduction in hospitalizations, hospital length of stay, and emergency department visits following the implementation of an electronically generated laboratory report with recommendations based on clinical guidelines. The evidence showed no difference in disease-specific outcomes; there was no evidence of a positive impact on process-of-care indicators or measures of efficiency.
Limitations
A limited body of research specifically examined eTools for health information exchange in the population and setting of interest. This evidence included a combination of study designs and was further limited by heterogeneity in individual technologies and settings in which they were implemented.
Conclusions
There is evidence that the right eTools in the right environment and context can significantly impact health services utilization. However, the findings from this evidence-based analysis raise doubts about the ability of eTools with care-coordination capabilities to independently improve the quality of outpatient care. While eTools may be able to support and sustain processes, inefficiencies embedded in the health care system may require more than automation alone to resolve.
Plain Language Summary
Patients with chronic diseases often work with many different health care providers. To ensure smooth transitions from one setting to the next, health care providers must share information and coordinate care effectively. Electronic medical records (eTools) are being used more and more to coordinate patient care, but it is not yet known whether they are more effective than paper-based health records. In this analysis, we reviewed the evidence for the use of eTools to exchange information and coordinate care for people with chronic diseases in the community. There was some evidence that eTools reduced the number of hospital and emergency department visits, as well as patients' length of stay in the hospital, but there was no evidence that eTools improved the overall quality of patient care.
PMCID: PMC3814806  PMID: 24194799
22.  A qualitative study of Canada’s experience with the implementation of electronic health information technology 
Background
In 2001, Canada Health Infoway unveiled a plan to implement a national system of interoperable electronic health records. This government-funded corporation introduced a novel model for interprovincial/territorial collaboration to establish core aspects of a national framework. Despite this $1.6 billion initiative, Canada continues to lag behind other Western countries in adopting electronic health records. We conducted a study to identify the success of different aspects of the Canadian plan and ways to improve the adoption of electronic health records.
Methods
We used a case study approach to assess the 10-year history of Canada’s e-health plan. National reports and documents were reviewed, and structured interviews were conducted with 29 key stakeholders representing national and provincial organizations responsible for establishing policy and strategic direction for health information technology. Using grounded theory, we analyzed transcripts of the interviews to identify themes and their relationships.
Results
Key stakeholders identified funding, national standards, patient registries and digital imaging as important achievements of the e-health plan. Lack of an e-health policy, inadequate involvement of clinicians, failure to establish a business case for using electronic health records, a focus on national rather than regional interoperability, and inflexibility in approach were seen as barriers to adoption of the plan.
Interpretation
To accelerate adoption of electronic health records and timely return on investment, an e-health policy needs to be tightly aligned with the major strategic directions of health care reform. Adoption needs to be actively fostered through a bottom-up, clinical-needs-first approach, a national policy for investment in electronic health records, and financial incentives based on patient outcomes that can be achieved with electronic health records.
doi:10.1503/cmaj.100856
PMCID: PMC3060213  PMID: 21343262
23.  Effectiveness of Using Mobile Phone Image Capture for Collecting Secondary Data: A Case Study on Immunization History Data Among Children in Remote Areas of Thailand 
JMIR mHealth and uHealth  2015;3(3):e75.
Background
Entering data onto paper-based forms, then digitizing them, is a traditional data-management method that might result in poor data quality, especially when the secondary data are incomplete, illegible, or missing. Transcription errors from source documents to case report forms (CRFs) are common, and subsequently the errors pass from the CRFs to the electronic database.
Objective
This study aimed to demonstrate the usefulness and to evaluate the effectiveness of mobile phone camera applications in capturing health-related data, aiming for data quality and completeness as compared to current routine practices exercised by government officials.
Methods
In this study, the concept of “data entry via phone image capture” (DEPIC) was introduced and developed to capture data directly from source documents. This case study was based on immunization history data recorded in a mother and child health (MCH) logbook. The MCH logbooks (kept by parents) were updated whenever parents brought their children to health care facilities for immunization. Traditionally, health providers are supposed to key in duplicate information of the immunization history of each child; both on the MCH logbook, which is returned to the parents, and on the individual immunization history card, which is kept at the health care unit to be subsequently entered into the electronic health care information system (HCIS). In this study, DEPIC utilized the photographic functionality of mobile phones to capture images of all immunization-history records on logbook pages and to transcribe these records directly into the database using a data-entry screen corresponding to logbook data records. DEPIC data were then compared with HCIS data-points for quality, completeness, and consistency.
Results
As a proof-of-concept, DEPIC captured immunization history records of 363 ethnic children living in remote areas from their MCH logbooks. Comparison of the 2 databases, DEPIC versus HCIS, revealed differences in the percentage of completeness and consistency of immunization history records. Comparing the records of each logbook in the DEPIC and HCIS databases, 17.3% (63/363) of children had complete immunization history records in the DEPIC database, but no complete records were reported in the HCIS database. Regarding the individual’s actual vaccination dates, comparison of records taken from MCH logbook and those in the HCIS found that 24.2% (88/363) of the children’s records were absolutely inconsistent. In addition, statistics derived from the DEPIC records showed a higher immunization coverage and much more compliance to immunization schedule by age group when compared to records derived from the HCIS database.
Conclusions
DEPIC, or the concept of collecting data via image capture directly from their primary sources, has proven to be a useful data collection method in terms of completeness and consistency. In this study, DEPIC was implemented in data collection of a single survey. The DEPIC concept, however, can be easily applied in other types of survey research, for example, collecting data on changes or trends based on image evidence over time. With its image evidence and audit trail features, DEPIC has the potential for being used even in clinical studies since it could generate improved data integrity and more reliable statistics for use in both health care and research settings.
doi:10.2196/mhealth.4183
PMCID: PMC4527008  PMID: 26194880
health care information system; DEPIC; mobile technology; maternal and child health; mHealth; vaccine record; electronic data capture
24.  Protocol for implementation of family health history collection and decision support into primary care using a computerized family health history system 
Background
The CDC's Family History Public Health Initiative encourages adoption and increase awareness of family health history. To meet these goals and develop a personalized medicine implementation science research agenda, the Genomedical Connection is using an implementation research (T3 research) framework to develop and integrate a self-administered computerized family history system with built-in decision support into 2 primary care clinics in North Carolina.
Methods/Design
The family health history system collects a three generation family history on 48 conditions and provides decision support (pedigree and tabular family history, provider recommendation report and patient summary report) for 4 pilot conditions: breast cancer, ovarian cancer, colon cancer, and thrombosis. All adult English-speaking, non-adopted, patients scheduled for well-visits are invited to complete the family health system prior to their appointment. Decision support documents are entered into the medical record and available to provider's prior to the appointment. In order to optimize integration, components were piloted by stakeholders prior to and during implementation. Primary outcomes are change in appropriate testing for hereditary thrombophilia and screening for breast cancer, colon cancer, and ovarian cancer one year after study enrollment. Secondary outcomes include implementation measures related to the benefits and burdens of the family health system and its impact on clinic workflow, patients' risk perception, and intention to change health related behaviors. Outcomes are assessed through chart review, patient surveys at baseline and follow-up, and provider surveys. Clinical validity of the decision support is calculated by comparing its recommendations to those made by a genetic counselor reviewing the same pedigree; and clinical utility is demonstrated through reclassification rates and changes in appropriate screening (the primary outcome).
Discussion
This study integrates a computerized family health history system within the context of a routine well-visit appointment to overcome many of the existing barriers to collection and use of family history information by primary care providers. Results of the implementation process, its acceptability to patients and providers, modifications necessary to optimize the system, and impact on clinical care can serve to guide future implementation projects for both family history and other tools of personalized medicine, such as health risk assessments.
doi:10.1186/1472-6963-11-264
PMCID: PMC3200182  PMID: 21989281
25.  Stakeholder engagement: a key component of integrating genomic information into electronic health records 
Integrating genomic information into clinical care and the electronic health record can facilitate personalized medicine through genetically guided clinical decision support. Stakeholder involvement is critical to the success of these implementation efforts. Prior work on implementation of clinical information systems provides broad guidance to inform effective engagement strategies. We add to this evidence-based recommendations that are specific to issues at the intersection of genomics and the electronic health record. We describe stakeholder engagement strategies employed by the Electronic Medical Records and Genomics Network, a national consortium of US research institutions funded by the National Human Genome Research Institute to develop, disseminate, and apply approaches that combine genomic and electronic health record data. Through select examples drawn from sites of the Electronic Medical Records and Genomics Network, we illustrate a continuum of engagement strategies to inform genomic integration into commercial and homegrown electronic health records across a range of health-care settings. We frame engagement as activities to consult, involve, and partner with key stakeholder groups throughout specific phases of health information technology implementation. Our aim is to provide insights into engagement strategies to guide genomic integration based on our unique network experiences and lessons learned within the broader context of implementation research in biomedical informatics. On the basis of our collective experience, we describe key stakeholder practices, challenges, and considerations for successful genomic integration to support personalized medicine.
doi:10.1038/gim.2013.127
PMCID: PMC3909653  PMID: 24030437
electronic health records; genomics; health information technology; personalized medicine; stakeholder engagement; translational medical research

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