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1.  A blended knowledge translation initiative to improve colorectal cancer staging [ISRCTN56824239] 
Background
A significant gap has been documented between best practice and the actual practice of surgery. Our group identified that colorectal cancer staging in Ontario was suboptimal and subsequently developed a knowledge translation strategy using the principles of social marketing and the influence of expert and local opinion leaders for colorectal cancer.
Methods/Design
Opinion leaders were identified using the Hiss methodology. Hospitals in Ontario were cluster-randomized to one of two intervention arms. Both groups were exposed to a formal continuing medical education session given by the expert opinion leader for colorectal cancer. In the treatment group the local Opinion Leader for colorectal cancer was detailed by the expert opinion leader for colorectal cancer and received a toolkit. Forty-two centres agreed to have the expert opinion leader for colorectal cancer come and give a formal continuing medical education session that lasted between 50 minutes and 4 hours. No centres refused the intervention. These sessions were generally well attended by most surgeons, pathologists and other health care professionals at each centre. In addition all but one of the local opinion leaders for colorectal cancer met with the expert opinion leader for colorectal cancer for the academic detailing session that lasted between 15 and 30 minutes.
Discussion
We have enacted a unique study that has attempted to induce practice change among surgeons and pathologists using an adapted social marketing model that utilized the influence of both expert and local opinion leaders for colorectal cancer in a large geographic area with diverse practice settings.
doi:10.1186/1472-6963-6-4
PMCID: PMC1395360  PMID: 16412251
2.  Local opinion leaders: effects on professional practice and health care outcomes 
Background
Clinical practice is not always evidence-based and, therefore, may not optimise patient outcomes. Opinion leaders disseminating and implementing ‘best evidence’ is one method that holds promise as a strategy to bridge evidence-practice gaps.
Objectives
To assess the effectiveness of the use of local opinion leaders in improving professional practice and patient outcomes.
Search methods
We searched Cochrane EPOC Group Trials Register, the Cochrane Central Register of Controlled Trials, MEDLINE, EMBASE, HMIC, Science Citation Index, Social Science Citation Index, ISI Conference Proceedings and World Cat Dissertations up to 5 May 2009. In addition, we searched reference lists of included articles.
Selection criteria
Studies eligible for inclusion were randomised controlled trials investigating the effectiveness of using opinion leaders to disseminate evidence-based practice and reporting objective measures of professional performance and/or health outcomes.
Data collection and analysis
Two review authors independently extracted data from each study and assessed its risk of bias. For each trial, we calculated the median risk difference (RD) for compliance with desired practice, adjusting for baseline where data were available. We reported the median adjusted RD for each of the main comparisons.
Main results
We included 18 studies involving more than 296 hospitals and 318 PCPs. Fifteen studies (18 comparisons) contributed to the calculations of the median adjusted RD for the main comparisons. The effects of interventions varied across the 63 outcomes from 15% decrease in compliance to 72% increase in compliance with desired practice. The median adjusted RD for the main comparisons were: i) Opinion leaders compared to no intervention, +0.09; ii) Opinion leaders alone compared to a single intervention, +0.14; iii) Opinion leaders with one or more additional intervention(s) compared to the one or more additional intervention(s), +0.10; iv) Opinion leaders as part of multiple interventions compared to no intervention, +0.10. Overall, across all 18 studies the median adjusted RD was +0.12 representing a 12% absolute increase in compliance in the intervention group.
Authors’ conclusions
Opinion leaders alone or in combination with other interventions may successfully promote evidence-based practice, but effectiveness varies both within and between studies. These results are based on heterogeneous studies differing in terms of type of intervention, setting, and outcomes measured. In most of the studies the role of the opinion leader was not clearly described, and it is therefore not possible to say what the best way is to optimise the effectiveness of opinion leaders.
doi:10.1002/14651858.CD000125.pub4
PMCID: PMC4172331  PMID: 21833939
*Leadership; *Policy Making; Evidence-Based Medicine [*standards]; Information Dissemination; Physician’s Practice Patterns; Process Assessment (Health Care); Professional Practice [*standards]; Randomized Controlled Trials as Topic; Humans
3.  Gathering opinion leader data for a tailored implementation intervention in secondary healthcare: a randomised trial 
Background
Health professionals’ behaviour is a key component in compliance with evidence-based recommendations. Opinion leaders are an oft-used method of influencing such behaviours in implementation studies, but reliably and cost effectively identifying them is not straightforward. Survey and questionnaire based data collection methods have potential and carefully chosen items can – in theory – both aid identification of opinion leaders and help in the design of an implementation strategy itself. This study compares two methods of identifying opinion leaders for behaviour-change interventions.
Methods
Healthcare professionals working in a single UK mental health NHS Foundation Trust were randomly allocated to one of two questionnaires. The first, slightly longer questionnaire, asked for multiple nominations of opinion leaders, with specific information about the nature of the relationship with each nominee. The second, shorter version, asked simply for a list of named “champions” but no more additional information. We compared, using Chi Square statistics, both the questionnaire response rates and the number of health professionals likely to be influenced by the opinion leaders (i.e. the “coverage” rates) for both questionnaire conditions.
Results
Both questionnaire versions had low response rates: only 15% of health professionals named colleagues in the longer questionnaire and 13% in the shorter version. The opinion leaders identified by both methods had a low number of contacts (range of coverage, 2–6 each). There were no significant differences in response rates or coverage between the two identification methods.
Conclusions
The low response and population coverage rates for both questionnaire versions suggest that alternative methods of identifying opinion leaders for implementation studies may be more effective. Future research should seek to identify and evaluate alternative, non-questionnaire based, methods of identifying opinion leaders in order to maximise their potential in organisational behaviour change interventions.
doi:10.1186/1471-2288-14-38
PMCID: PMC4015818  PMID: 24606877
4.  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
5.  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
6.  Identification of potential opinion leaders in child health promotion in Sweden using network analysis 
BMC Research Notes  2012;5:424.
Background
Opinion leaders are often local individuals with high credibility who can influence other people. Robust effects using opinion leaders in diffusing innovations have been shown in several randomized controlled trials, for example regarding sexually transmitted infections (STI), human immunodeficiency virus (HIV) prevention, mammography rates and caesarean birth delivery rates. In a Cochrane review 2010 it was concluded that the use of opinion leaders can successfully promote evidence-based practice. Thus, using opinion leaders within the public health sector might be one means to speed up the dissemination of health promoting and disease preventing innovations. Social network analysis has been used to trace and map networks, with focus on relationships and positions, in widely spread arenas and topics. The purpose of this study was to use social network analysis in order to identify potential opinion leaders at the arena of child health promotion in Sweden.
Results
By using snowball technique a short e-mail question was spread in up to five links, starting from seven initially invited persons. This inquiry resulted in a network consisting of 153 individuals. The most often mentioned actors were researchers, public health officials and paediatricians, or a combination of these professions. Four single individuals were mentioned by five to seven other persons in the network. These individuals obviously possess qualities that make other professionals within the public health sector listen to and trust them.
Conclusions
Social network analysis seemed to be a useful method to identify influential persons with high credibility, i.e. potential opinion leaders, at the arena of child health promotion in Sweden. If genuine opinion leaders could be identified directed measures can be carried out in order to spread new and relevant knowledge. This may facilitate for public health actors at the local, regional and national level to more rapidly progress innovations into everyday practice. However, effectiveness studies of opinion leaders in the public health sector still have to be performed.
doi:10.1186/1756-0500-5-424
PMCID: PMC3434052  PMID: 22873749
Network analysis; Opinion leaders; Child health promotion
7.  Opinion leaders and changes over time: a survey 
Background
Opinion leaders represent one way to disseminate new knowledge and influence the practice behaviors of physicians. This study explored the stability of opinion leaders over time, whether opinion leaders were polymorphic (i.e., influencing multiple practice areas) or monomorphic (i.e., influencing one practice area), and reach of opinion leaders in their local network.
Methods
We surveyed surgeons and pathologists in Ontario to identify opinion leaders for colorectal cancer in 2003 and 2005 and to identify opinion leaders for breast cancer in 2005. We explored whether opinion leaders for colorectal cancer identified in 2003 were re-identified in 2005. We examined whether opinion leaders were considered polymorphic (nominated in 2005 as opinion leaders for both colorectal and breast cancer) or monomorphic (nominated in 2005 for only one condition). Social-network mapping was used to identify the number of local colleagues identifying opinion leaders.
Results
Response rates for surgeons were 41% (2003) and 40% (2005); response rates for pathologists were 42% (2003) and 37% (2005). Four (25%) of the surgical opinion leaders identified in 2003 for colorectal cancer were re-identified in 2005. No pathology opinion leaders for colorectal cancer were identified in both 2003 and 2005. Only 29% of surgical opinion leaders and 17% of pathology opinion leaders identified in the 2005 survey were considered influential for both colorectal cancer and breast cancer. Social-network mapping revealed that only a limited number of general surgeons (12%) or pathologists (7%) were connected to the social networks of identified opinion leaders.
Conclusions
Opinion leaders identified in this study were not stable over a two-year time period and generally appear to be monomorphic, with clearly demarcated areas of expertise and limited spheres of influence. These findings may limit the practicability of routinely using opinion leaders to influence practice.
doi:10.1186/1748-5908-6-117
PMCID: PMC3205036  PMID: 21988924
8.  Main Report 
Genetics in Medicine  2006;8(Suppl 1):12S-252S.
Background:
States vary widely in their use of newborn screening tests, with some mandating screening for as few as three conditions and others mandating as many as 43 conditions, including varying numbers of the 40+ conditions that can be detected by tandem mass spectrometry (MS/MS). There has been no national guidance on the best candidate conditions for newborn screening since the National Academy of Sciences report of 19751 and the United States Congress Office of Technology Assessment report of 1988,2 despite rapid developments since then in genetics, in screening technologies, and in some treatments.
Objectives:
In 2002, the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA) of the United States Department of Health and Human Services (DHHS) commissioned the American College of Medical Genetics (ACMG) to: Conduct an analysis of the scientific literature on the effectiveness of newborn screening.Gather expert opinion to delineate the best evidence for screening for specified conditions and develop recommendations focused on newborn screening, including but not limited to the development of a uniform condition panel.Consider other components of the newborn screening system that are critical to achieving the expected outcomes in those screened.
Methods:
A group of experts in various areas of subspecialty medicine and primary care, health policy, law, public health, and consumers worked with a steering committee and several expert work groups, using a two-tiered approach to assess and rank conditions. A first step was developing a set of principles to guide the analysis. This was followed by developing criteria by which conditions could be evaluated, and then identifying the conditions to be evaluated. A large and broadly representative group of experts was asked to provide their opinions on the extent to which particular conditions met the selected criteria, relying on supporting evidence and references from the scientific literature. The criteria were distributed among three main categories for each condition: The availability and characteristics of the screening test;The availability and complexity of diagnostic services; andThe availability and efficacy of treatments related to the conditions. A survey process utilizing a data collection instrument was used to gather expert opinion on the conditions in the first tier of the assessment. The data collection format and survey provided the opportunity to quantify expert opinion and to obtain the views of a diverse set of interest groups (necessary due to the subjective nature of some of the criteria). Statistical analysis of data produced a score for each condition, which determined its ranking and initial placement in one of three categories (high scoring, moderately scoring, or low scoring/absence of a newborn screening test). In the second tier of these analyses, the evidence base related to each condition was assessed in depth (e.g., via systematic reviews of reference lists including MedLine, PubMed and others; books; Internet searches; professional guidelines; clinical evidence; and cost/economic evidence and modeling). The fact sheets reflecting these analyses were evaluated by at least two acknowledged experts for each condition. These experts assessed the data and the associated references related to each criterion and provided corrections where appropriate, assigned a value to the level of evidence and the quality of the studies that established the evidence base, and determined whether there were significant variances from the survey data. Survey results were subsequently realigned with the evidence obtained from the scientific literature during the second-tier analysis for all objective criteria, based on input from at least three acknowledged experts in each condition. The information from these two tiers of assessment was then considered with regard to the overriding principles and other technology or condition-specific recommendations. On the basis of this information, conditions were assigned to one of three categories as described above:Core Panel;Secondary Targets (conditions that are part of the differential diagnosis of a core panel condition.); andNot Appropriate for Newborn Screening (either no newborn screening test is available or there is poor performance with regard to multiple other evaluation criteria).
ACMG also considered features of optimal newborn screening programs beyond the tests themselves by assessing the degree to which programs met certain goals (e.g., availability of educational programs, proportions of newborns screened and followed up). Assessments were based on the input of experts serving in various capacities in newborn screening programs and on 2002 data provided by the programs of the National Newborn Screening and Genetics Resource Center (NNSGRC). In addition, a brief cost-effectiveness assessment of newborn screening was conducted.
Results:
Uniform panel
A total of 292 individuals determined to be generally representative of the regional distribution of the United States population and of areas of expertise or involvement in newborn screening provided a total of 3,949 evaluations of 84 conditions. For each condition, the responses of at least three experts in that condition were compared with those of all respondents for that condition and found to be consistent. A score of 1,200 on the data collection instrument provided a logical separation point between high scoring conditions (1,200–1,799 of a possible 2,100) and low scoring (<1,000) conditions. A group of conditions with intermediate scores (1,000–1,199) was identified, all of which were part of the differential diagnosis of a high scoring condition or apparent in the result of the multiplex assay. Some are identified by screening laboratories and others by diagnostic laboratories. This group was designated as a “secondary target” category for which the program must report the diagnostic result.
Using the validated evidence base and expert opinion, each condition that had previously been assigned to a category based on scores gathered through the data collection instrument was reconsidered. Again, the factors taken into consideration were: 1) available scientific evidence; 2) availability of a screening test; 3) presence of an efficacious treatment; 4) adequate understanding of the natural history of the condition; and 5) whether the condition was either part of the differential diagnosis of another condition or whether the screening test results related to a clinically significant condition.
The conditions were then assigned to one of three categories as previously described (core panel, secondary targets, or not appropriate for Newborn Screening).
Among the 29 conditions assigned to the core panel are three hemoglobinopathies associated with a Hb/S allele, six amino acidurias, five disorders of fatty oxidation, nine organic acidurias, and six unrelated conditions (congenital hypothyroidism (CH), biotinidase deficiency (BIOT), congenital adrenal hyperplasia (CAH), classical galactosemia (GALT), hearing loss (HEAR) and cystic fibrosis (CF)). Twenty-three of the 29 conditions in the core panel are identified with multiplex technologies such as tandem mass spectrometry (MS/MS) or high pressure liquid chromatography (HPLC). On the basis of the evidence, six of the 35 conditions initially placed in the core panel were moved into the secondary target category, which expanded to 25 conditions. Test results not associated with potential disease in the infant (e.g., carriers) were also placed in the secondary target category. When newborn screening laboratory results definitively establish carrier status, the result should be made available to the health care professional community and families. Twenty-seven conditions were determined to be inappropriate for newborn screening at this time.
Conditions with limited evidence reported in the scientific literature were more difficult to evaluate, quantify and place in one of the three categories. In addition, many conditions were found to occur in multiple forms distinguished by age-of-onset, severity, or other features. Further, unless a condition was already included in newborn screening programs, there was a potential for bias in the information related to some criteria. In such circumstances, the quality of the studies underlying the data such as expert opinion that considered case reports and reasoning from first principles determined the placement of the conditions into particular categories.
Newborn screening program optimization
– Assessment of the activities of newborn screening programs, based on program reports, was done for the six program components: education; screening; follow-up; diagnostic confirmation; management; and program evaluation. Considerable variation was found between programs with regard to whether particular aspects (e.g., prenatal education program availability, tracking of specimen collection and delivery) were included and the degree to which they are provided. Newborn screening program evaluation systems also were assessed in order to determine their adequacy and uniformity with the goal being to improve interprogram evaluation and comparison to ensure that the expected outcomes from having been identified in screening are realized.
Conclusions:
The state of the published evidence in the fast-moving worlds of newborn screening and medical genetics has not kept up with the implementation of new technologies, thus requiring the considerable use of expert opinion to develop recommendations about a core panel of conditions for newborn screening. Twenty-nine conditions were identified as primary targets for screening from which all components of the newborn screening system should be maximized. An additional 25 conditions were listed that could be identified in the course of screening for core panel conditions. Programs are obligated to establish a diagnosis and communicate the result to the health care provider and family. It is recognized that screening may not have been maximized for the detection of these secondary conditions but that some proportion of such cases may be found among those screened for core panel conditions. With additional screening, greater training of primary care health care professionals and subspecialists will be needed, as will the development of an infrastructure for appropriate follow-up and management throughout the lives of children who have been identified as having one of these rare conditions. Recommended actions to overcome barriers to an optimal newborn screening system include: The establishment of a national role in the scientific evaluation of conditions and the technologies by which they are screened;Standardization of case definitions and reporting procedures;Enhanced oversight of hospital-based screening activities;Long-term data collection and surveillance; andConsideration of the financial needs of programs to allow them to deliver the appropriate services to the screened population.
doi:10.1097/01.gim.0000223467.60151.02
PMCID: PMC3109899
9.  Leadership of healthcare commissioning networks in England: a mixed-methods study on clinical commissioning groups 
BMJ Open  2013;3(2):e002112.
Objective
To explore the relational challenges for general practitioner (GP) leaders setting up new network-centric commissioning organisations in the recent health policy reform in England, we use innovation network theory to identify key network leadership practices that facilitate healthcare innovation.
Design
Mixed-method, multisite and case study research.
Setting
Six clinical commissioning groups and local clusters in the East of England area, covering in total 208 GPs and 1 662 000 population.
Methods
Semistructured interviews with 56 lead GPs, practice managers and staff from the local health authorities (primary care trusts, PCT) as well as various healthcare professionals; 21 observations of clinical commissioning group (CCG) board and executive meetings; electronic survey of 58 CCG board members (these included GPs, practice managers, PCT employees, nurses and patient representatives) and subsequent social network analysis.
Main outcome measures
Collaborative relationships between CCG board members and stakeholders from their healthcare network; clarifying the role of GPs as network leaders; strengths and areas for development of CCGs.
Results
Drawing upon innovation network theory provides unique insights of the CCG leaders’ activities in establishing best practices and introducing new clinical pathways. In this context we identified three network leadership roles: managing knowledge flows, managing network coherence and managing network stability. Knowledge sharing and effective collaboration among GPs enable network stability and the alignment of CCG objectives with those of the wider health system (network coherence). Even though activities varied between commissioning groups, collaborative initiatives were common. However, there was significant variation among CCGs around the level of engagement with providers, patients and local authorities. Locality (sub) groups played an important role because they linked commissioning decisions with patient needs and brought the leaders closer to frontline stakeholders.
Conclusions
With the new commissioning arrangements, the leaders should seek to move away from dyadic and transactional relationships to a network structure, thereby emphasising on the emerging relational focus of their roles. Managing knowledge mobility, healthcare network coherence and network stability are the three clinical leadership processes that CCG leaders need to consider in coordinating their network and facilitating the development of good clinical commissioning decisions, best practices and innovative services. To successfully manage these processes, CCG leaders need to leverage the relational capabilities of their network as well as their clinical expertise to establish appropriate collaborations that may improve the healthcare services in England. Lack of local GP engagement adds uncertainty to the system and increases the risk of commissioning decisions being irrelevant and inefficient from patient and provider perspectives.
doi:10.1136/bmjopen-2012-002112
PMCID: PMC3586053  PMID: 23430596
Health Services Administration & Management; Qualitative Research
10.  Clinician-centred interventions to increase vaginal birth after caesarean section (VBAC): a systematic review 
Background
The number of caesarean sections (CS) is increasing globally, and repeat CS after a previous CS is a significant contributor to the overall CS rate. Vaginal birth after caesarean (VBAC) can be seen as a real and viable option for most women with previous CS. To achieve success, however, women need the support of their clinicians (obstetricians and midwives). The aim of this study was to evaluate clinician-centred interventions designed to increase the rate of VBAC.
Methods
The bibliographic databases of The Cochrane Library, PubMed, PsychINFO and CINAHL were searched for randomised controlled trials, including cluster randomised trials that evaluated the effectiveness of any intervention targeted directly at clinicians aimed at increasing VBAC rates. Included studies were appraised independently by two reviewers. Data were extracted independently by three reviewers. The quality of the included studies was assessed using the quality assessment tool, ‘Effective Public Health Practice Project’. The primary outcome measure was VBAC rates.
Results
238 citations were screened, 255 were excluded by title and abstract. 11 full-text papers were reviewed; eight were excluded, resulting in three included papers. One study evaluated the effectiveness of antepartum x-ray pelvimetry (XRP) in 306 women with one previous CS. One study evaluated the effects of external peer review on CS birth in 45 hospitals, and the third evaluated opinion leader education and audit and feedback in 16 hospitals. The use of external peer review, audit and feedback had no significant effect on VBAC rates. An educational strategy delivered by an opinion leader significantly increased VBAC rates. The use of XRP significantly increased CS rates.
Conclusions
This systematic review indicates that few studies have evaluated the effects of clinician-centred interventions on VBAC rates, and interventions are of varying types which limited the ability to meta-analyse data. A further limitation is that the included studies were performed during the late 1980s-1990s. An opinion leader educational strategy confers benefit for increasing VBAC rates. This strategy should be further studied in different maternity care settings and with professionals other than physicians only.
Electronic supplementary material
The online version of this article (doi:10.1186/s12884-015-0441-3) contains supplementary material, which is available to authorized users.
doi:10.1186/s12884-015-0441-3
PMCID: PMC4324420  PMID: 25652550
VBAC; Systematic review; Interventions; Clinicians
11.  No magic bullets: a systematic review of 102 trials of interventions to improve professional practice. 
OBJECTIVE: To determine the effectiveness of different types of interventions in improving health professional performance and health outcomes. DATA SOURCES: MEDLINE, SCISEARCH, CINAHL and the Research and Development Resource Base in CME were searched for trials of educational interventions in the health care professions published between 1970 and 1993 inclusive. STUDY SELECTION: Studies were selected if they provided objective measurements of health professional performance or health outcomes and employed random or quasi-random allocation methods in their study designs to assign individual subjects or groups. Interventions included such activities as conferences, outreach visits, the use of local opinion leaders, audit and feedback, and reminder systems. DATA EXTRACTION: Details extracted from the studies included the study design; the unit of allocation (e.g., patient, provider, practice, hospital); the characteristics of the targeted health care professionals, educational interventions and patients (when appropriate); and the main outcome measure. DATA SYNTHESIS: The inclusion criteria were met by 102 trials. Areas of behaviour change included general patient management, preventive services, prescribing practices, treatment of specific conditions such as hypertension or diabetes, and diagnostic service or hospital utilization. Dissemination-only strategies, such as conferences or the mailing of unsolicited materials, demonstrated little or no changes in health professional behaviour or health outcome when used alone. More complex interventions, such as the use of outreach visits or local opinion leaders, ranged from ineffective to highly effective but were most often moderately effective (resulting in reductions of 20% to 50% in the incidence of inappropriate performance). CONCLUSION: There are no "magic bullets" for improving the quality of health care, but there are a wide range of interventions available that, if used appropriately, could lead to important improvements in professional practice and patient outcomes.
PMCID: PMC1487455  PMID: 7585368
12.  Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors 
Executive Summary
In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry’s newly released Aging at Home Strategy.
After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person’s transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report.
Please visit the Medical Advisory Secretariat Web site, http://www.health.gov.on.ca/english/providers/program/mas/mas_about.html, to review these titles within the Aging in the Community series.
Aging in the Community: Summary of Evidence-Based Analyses
Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis
Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis
Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis
Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis
The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR)
Objective
To assess the effectiveness of behavioural interventions for the treatment and management of urinary incontinence (UI) in community-dwelling seniors.
Clinical Need: Target Population and Condition
Urinary incontinence defined as “the complaint of any involuntary leakage of urine” was identified as 1 of the key predictors in a senior’s transition from independent community living to admission to a long-term care (LTC) home. Urinary incontinence is a health problem that affects a substantial proportion of Ontario’s community-dwelling seniors (and indirectly affects caregivers), impacting their health, functioning, well-being and quality of life. Based on Canadian studies, prevalence estimates range from 9% to 30% for senior men and nearly double from 19% to 55% for senior women. The direct and indirect costs associated with UI are substantial. It is estimated that the total annual costs in Canada are $1.5 billion (Cdn), and that each year a senior living at home will spend $1,000 to $1,500 on incontinence supplies.
Interventions to treat and manage UI can be classified into broad categories which include lifestyle modification, behavioural techniques, medications, devices (e.g., continence pessaries), surgical interventions and adjunctive measures (e.g., absorbent products).
The focus of this review is behavioural interventions, since they are commonly the first line of treatment considered in seniors given that they are the least invasive options with no reported side effects, do not limit future treatment options, and can be applied in combination with other therapies. In addition, many seniors would not be ideal candidates for other types of interventions involving more risk, such as surgical measures.
Note: It is recognized that the terms “senior” and “elderly” carry a range of meanings for different audiences; this report generally uses the former, but the terms are treated here as essentially interchangeable.
Description of Technology/Therapy
Behavioural interventions can be divided into 2 categories according to the target population: caregiver-dependent techniques and patient-directed techniques. Caregiver-dependent techniques (also known as toileting assistance) are targeted at medically complex, frail individuals living at home with the assistance of a caregiver, who tends to be a family member. These seniors may also have cognitive deficits and/or motor deficits. A health care professional trains the senior’s caregiver to deliver an intervention such as prompted voiding, habit retraining, or timed voiding. The health care professional who trains the caregiver is commonly a nurse or a nurse with advanced training in the management of UI, such as a nurse continence advisor (NCA) or a clinical nurse specialist (CNS).
The second category of behavioural interventions consists of patient-directed techniques targeted towards mobile, motivated seniors. Seniors in this population are cognitively able, free from any major physical deficits, and motivated to regain and/or improve their continence. A nurse or a nurse with advanced training in UI management, such as an NCA or CNS, delivers the patient-directed techniques. These are often provided as multicomponent interventions including a combination of bladder training techniques, pelvic floor muscle training (PFMT), education on bladder control strategies, and self-monitoring. Pelvic floor muscle training, defined as a program of repeated pelvic floor muscle contractions taught and supervised by a health care professional, may be employed as part of a multicomponent intervention or in isolation.
Education is a large component of both caregiver-dependent and patient-directed behavioural interventions, and patient and/or caregiver involvement as well as continued practice strongly affect the success of treatment. Incontinence products, which include a large variety of pads and devices for effective containment of urine, may be used in conjunction with behavioural techniques at any point in the patient’s management.
Evidence-Based Analysis Methods
A comprehensive search strategy was used to identify systematic reviews and randomized controlled trials that examined the effectiveness, safety, and cost-effectiveness of caregiver-dependent and patient-directed behavioural interventions for the treatment of UI in community-dwelling seniors (see Appendix 1).
Research Questions
Are caregiver-dependent behavioural interventions effective in improving UI in medically complex, frail community-dwelling seniors with/without cognitive deficits and/or motor deficits?
Are patient-directed behavioural interventions effective in improving UI in mobile, motivated community-dwelling seniors?
Are behavioural interventions delivered by NCAs or CNSs in a clinic setting effective in improving incontinence outcomes in community-dwelling seniors?
Assessment of Quality of Evidence
The quality of the evidence was assessed as high, moderate, low, or very low according to the GRADE methodology and GRADE Working Group. As per GRADE the following definitions apply:
Summary of Findings
Executive Summary Table 1 summarizes the results of the analysis.
The available evidence was limited by considerable variation in study populations and in the type and severity of UI for studies examining both caregiver-directed and patient-directed interventions. The UI literature frequently is limited to reporting subjective outcome measures such as patient observations and symptoms. The primary outcome of interest, admission to a LTC home, was not reported in the UI literature. The number of eligible studies was low, and there were limited data on long-term follow-up.
Summary of Evidence on Behavioural Interventions for the Treatment of Urinary Incontinence in Community-Dwelling Seniors
Prompted voiding
Habit retraining
Timed voiding
Bladder training
PFMT (with or without biofeedback)
Bladder control strategies
Education
Self-monitoring
CI refers to confidence interval; CNS, clinical nurse specialist; NCA, nurse continence advisor; PFMT, pelvic floor muscle training; RCT, randomized controlled trial; WMD, weighted mean difference; UI, urinary incontinence.
Economic Analysis
A budget impact analysis was conducted to forecast costs for caregiver-dependent and patient-directed multicomponent behavioural techniques delivered by NCAs, and PFMT alone delivered by physiotherapists. All costs are reported in 2008 Canadian dollars. Based on epidemiological data, published medical literature and clinical expert opinion, the annual cost of caregiver-dependent behavioural techniques was estimated to be $9.2 M, while the annual costs of patient-directed behavioural techniques delivered by either an NCA or physiotherapist were estimated to be $25.5 M and $36.1 M, respectively. Estimates will vary if the underlying assumptions are changed.
Currently, the province of Ontario absorbs the cost of NCAs (available through the 42 Community Care Access Centres across the province) in the home setting. The 2007 Incontinence Care in the Community Report estimated that the total cost being absorbed by the public system of providing continence care in the home is $19.5 M in Ontario. This cost estimate included resources such as personnel, communication with physicians, record keeping and product costs. Clinic costs were not included in this estimation because currently these come out of the global budget of the respective hospital and very few continence clinics actually exist in the province. The budget impact analysis factored in a cost for the clinic setting, assuming that the public system would absorb the cost with this new model of community care.
Considerations for Ontario Health System
An expert panel on aging in the community met on 3 occasions from January to May 2008, and in part, discussed treatment of UI in seniors in Ontario with a focus on caregiver-dependent and patient-directed behavioural interventions. In particular, the panel discussed how treatment for UI is made available to seniors in Ontario and who provides the service. Some of the major themes arising from the discussions included:
Services/interventions that currently exist in Ontario offering behavioural interventions to treat UI are not consistent. There is a lack of consistency in how seniors access services for treatment of UI, who manages patients and what treatment patients receive.
Help-seeking behaviours are important to consider when designing optimal service delivery methods.
There is considerable social stigma associated with UI and therefore there is a need for public education and an awareness campaign.
The cost of incontinent supplies and the availability of NCAs were highlighted.
Conclusions
There is moderate-quality evidence that the following interventions are effective in improving UI in mobile motivated seniors:
Multicomponent behavioural interventions including a combination of bladder training techniques, PFMT (with or without biofeedback), education on bladder control strategies and self-monitoring techniques.
Pelvic floor muscle training alone.
There is moderate quality evidence that when behavioural interventions are led by NCAs or CNSs in a clinic setting, they are effective in improving UI in seniors.
There is limited low-quality evidence that prompted voiding may be effective in medically complex, frail seniors with motivated caregivers.
There is insufficient evidence for the following interventions in medically complex, frail seniors with motivated caregivers:
habit retraining, and
timed voiding.
PMCID: PMC3377527  PMID: 23074508
13.  Identifying Network Public Opinion Leaders Based on Markov Logic Networks 
The Scientific World Journal  2014;2014:268592.
Public opinion emergencies have important effect on social activities. Recognition of special communities like opinion leaders can contribute to a comprehensive understanding of the development trend of public opinion. In this paper, a network opinion leader recognition method based on relational data was put forward, and an opinion leader recognition system integrating public opinion data acquisition module, data characteristic selection, and fusion module as well as opinion leader discovery module based on Markov Logic Networks was designed. The designed opinion leader recognition system not only can overcome the incomplete data acquisition and isolated task of traditional methods, but also can recognize opinion leaders comprehensively with considerations to multiple problems by using the relational model. Experimental results demonstrated that, compared with the traditional methods, the proposed method can provide a more accurate opinion leader recognition and has good noise immunity.
doi:10.1155/2014/268592
PMCID: PMC3995098  PMID: 24977188
14.  Discovering opinion leaders for medical topics using news articles 
Background
Rapid identification of subject experts for medical topics helps in improving the implementation of discoveries by speeding the time to market drugs and aiding in clinical trial recruitment, etc. Identifying such people who influence opinion through social network analysis is gaining prominence. In this work, we explore how to combine named entity recognition from unstructured news articles with social network analysis to discover opinion leaders for a given medical topic.
Methods
We employed a Conditional Random Field algorithm to extract three categories of entities from health-related new articles: Person, Organization and Location. We used the latter two to disambiguate polysemy and synonymy for the person names, used simple rules to identify the subject experts, and then applied social network analysis techniques to discover the opinion leaders among them based on their media presence. A network was created by linking each pair of subject experts who are mentioned together in an article. The social network analysis metrics (including centrality metrics such as Betweenness, Closeness, Degree and Eigenvector) are used for ranking the subject experts based on their power in information flow.
Results
We extracted 734,204 person mentions from 147,528 news articles related to obesity from January 1, 2007 through July 22, 2010. Of these, 147,879 mentions have been marked as subject experts. The F-score of extracting person names is 88.5%. More than 80% of the subject experts who rank among top 20 in at least one of the metrics could be considered as opinion leaders in obesity.
Conclusion
The analysis of the network of subject experts with media presence revealed that an opinion leader might have fewer mentions in the news articles, but a high network centrality measure and vice-versa. Betweenness, Closeness and Degree centrality measures were shown to supplement frequency counts in the task of finding subject experts. Further, opinion leaders missed in scientific publication network analysis could be retrieved from news articles.
doi:10.1186/2041-1480-3-2
PMCID: PMC3338075  PMID: 22420330
15.  Shared Expectations for Protection of Identifiable Health Care Information 
OBJECTIVE
The Ethical Force Program is a collaborative effort to create performance measures for ethics in health care. This report lays out areas of consensus that may be amenable to performance measurement on protecting the privacy, confidentiality and security of identifiable health information.
DESIGN
Iterative consensus development process.
PARTICIPANTS
The program's oversight body and its expert panel on privacy include national leaders representing the perspectives of physicians, patients, purchasers, health plans, hospitals, and medical ethicists as well as public health, law, and medical informatics experts.
METHODS AND MAIN RESULTS
The oversight body appointed a national Expert Advisory Panel on Privacy and Confidentiality in September 1998. This group compiled and reviewed existing norms, including governmental reports and legal standards, professional association policies, private organization statements and policies, accreditation standards, and ethical opinions. A set of specific and assessable expectations for ethical conduct in this domain was then drafted and refined through 7 meetings over 16 months. In the final 2 iterations, each expectation was graded on a scale of 1 to 10 by each oversight body member on whether it was: (1) important, (2) universally applicable, (3) feasible to measure, and (4) realistic to implement. The expectations that did not score more than 7 (mean) on all 4 scales were reconsidered and retained only if the entire oversight body agreed that they should be used as potential subjects for performance measurement. Consensus was achieved on 34 specific expectations. The expectations fell into 8 content areas, addressing the need for transparency of policies and practices, consent for use and disclosure of identifiable information, limitations on information that can be collected and by whom, individual access to one's own health records, security requirements for storage and transfer of information, provisions to ensure ongoing data quality, limitations on how identifiable information may be used, and provisions for meaningful accountability.
CONCLUSIONS
This process established consensus on 34 measurable ethical expectations for the protection of privacy and confidentiality in health care. These expectations should apply to any organization with access to personally identifiable health information, including managed care organizations, physician groups, hospitals, other provider organizations, and purchasers. Performance measurement on these expectations may improve accountability across the health care system.
doi:10.1111/j.1525-1497.2001.00515.x
PMCID: PMC1495179  PMID: 11251761
health policy; health care information
16.  Is there any role for community involvement in the community-based health planning and services skilled delivery program in rural Ghana? 
Background
In Ghana, between 1,400 and 3,900 women and girls die annually due to pregnancy related complications and an estimated two-thirds of these deaths occur in late pregnancy through to 48 hours after delivery. The Ghana Health Service piloted a strategy that involved training Community Health Officers (CHOs) as midwives to address the gap in skilled attendance in rural Upper East Region (UER). CHO-midwives collaborated with community members to provide skilled delivery services in rural areas. This paper presents findings from a study designed to assess the extent to which community residents and leaders participated in the skilled delivery program and the specific roles they played in its implementation and effectiveness.
Methods
We employed an intrinsic case study design with a qualitative methodology. We conducted 29 in-depth interviews with health professionals and community stakeholders. We used a random sampling technique to select the CHO-midwives in three Community-based Health Planning and Services (CHPS) zones for the interviews and a purposive sampling technique to identify and interview District Directors of Health Services from the three districts, the Regional Coordinator of the CHPS program and community stakeholders.
Results
Community members play a significant role in promoting skilled delivery care in CHPS zones in Ghana. We found that community health volunteers and traditional birth attendants (TBAs) helped to provide health education on skilled delivery care, and they also referred or accompanied their clients for skilled attendants at birth. The political authorities, traditional leaders, and community members provide resources to promote the skilled delivery program. Both volunteers and TBAs are given financial and non-financial incentives for referring their clients for skilled delivery. However, inadequate transportation, infrequent supply of drugs, attitude of nurses remains as challenges, hindering women accessing maternity services in rural areas.
Conclusions
Mutual collaboration and engagement is possible between health professionals and community members for the skilled delivery program. Community leaders, traditional and political leaders, volunteers, and TBAs have all been instrumental to the success of the CHPS program in the UER, each in their unique way. However, there are problems confronting the program and we have provided recommendations to address these challenges.
doi:10.1186/1472-6963-14-340
PMCID: PMC4251607  PMID: 25113017
Community-based service delivery; Ghana; Skilled birth attendance; Community participation; Community health workers
17.  Effectiveness of strategies to encourage general practitioners to accept an offer of free access to online evidence-based information: a randomised controlled trial 
Background
This study examined the effectiveness of seven different interventions designed to increase the proportion of general practitioners (GPs) accepting an offer of free access to an online evidence-based resource.
Methods
Australian GPs (n = 14,000) were randomly selected and assigned to seven intervention groups, with each receiving a different letter. Seven different strategies were used to encourage GPs to accept an offer of two years free access to an online evidence-based resource (BMJ Clinical Evidence). The first group received a standard letter of offer with no experimental demands. Groups two to seven received a standard letter of offer outlining the requirements of the study. They were asked to complete an initial online questionnaire, agree to complete a 12-month follow-up questionnaire, and agree to having data about their usage of the online evidence-based resource provided to researchers. Groups three to seven also had additional interventions included in the letter of offer: access to an online tutorial in use of the resource (group three); provision of a pamphlet with statements from influential opinion leaders endorsing the resource (group four); offer of eligibility to receive professional development points (group five); offer of eligibility for a prize of $500 for registration at a medical conference of their choice (group six); and a combination of some of the above interventions (group seven).
Results
In the group with no research demands, 27% accepted the offer. Average acceptance across all other groups was 10%. There was no advantage in using additional strategies such as financial incentives, opinion leader support, offer of professional development points, or an educational aid over a standard letter of offer to increase acceptance rates.
Conclusion
This study showed low acceptance rates of the offer of access to the online resource when there was an associated requirement of response to a short online questionnaire and non-obtrusive monitoring of GP behaviour in terms of accessing the resource. If we are to improve care and encourage evidence-based practice, we need to find effective ways of motivating doctors and other health professionals to take part in research that can inform our implementation efforts.
doi:10.1186/1748-5908-4-68
PMCID: PMC2770565  PMID: 19840400
18.  Transforming mental health services: a participatory mixed methods study to promote and evaluate the implementation of recovery-oriented services 
Background
Since 2007, the Mental Health Commission of Canada has worked collaboratively across all provinces to publish a framework and strategy for recovery and well-being. This federal document is now mandated as policy for implementation between 2012 and 2017. The proposed strategies have been written into provincial health plans, hospital accreditation standards, and annual objectives of psychiatric departments and community organizations. The core premise is: to empower persons with mental illness and their families to become participants in designing their own care, while meeting the needs of a diverse Canadian population. However, recovery principles do not come with an implementation guide to fit the variability of different local contexts. How can policy recommendations and accreditation standards be effectively tailored to support a diversity of stakeholder values? To our knowledge, there is little evidence indicating the most effective manner to accelerate the uptake of recovery-oriented services among providers in a given/particular mental health treatment setting.
Methods/Design
This three-year Canadian Institute of Health Research Partnership in Health System Improvement and The Rx&D Health Research Foundation (HRF) Fostering Canadian Innovation in Research study (2013 to 2017) proposed participatory approaches to implementing recovery principles in a Department of Psychiatry serving a highly diverse Canadian and immigrant population. This project will be conducted in overlapping and recursive phases: I) Conduct formative research to (a) measure the current knowledge and attitudes toward recovery and recovery-oriented practices among service providers, while concurrently (b) exploring the experiential knowledge of recovery service-users and family members; II) Collaborate with service-users and the network-identified opinion leaders among providers to tailor Recovery-in-Action Initiatives to fit the needs and resources of a Department of Psychiatry; and III) Conduct a systematic theory-based evaluation of changes in attitudes and practices within the service-user/service-provider partnership group relative to the overall provider network of the department and identify the barriers and supports within the local context.
Discussion
Our anticipated outcome is a participatory toolkit to tailor recovery-oriented services, which will be disseminated to the Mental Health Commission of Canada and Accreditation Canada at the federal level, agencies at the provincial levels, and local knowledge end-users.
doi:10.1186/s13012-014-0119-7
PMCID: PMC4176861  PMID: 25204812
Recovery; Applied policy; Mixed methods; Social network analysis; Ethnography; Narrative-phenomenology; Participatory research; Integrated knowledge translation
19.  Empowering Peer Group Leaders for HIV Prevention in Malawi 
Purpose
Behavioral change interventions using peer group leaders are effective and widely used, but few studies have examined how being a peer group leader affects the leaders. This study describes how participants felt being a peer group leader affected their lives.
Design
This descriptive qualitative study interviewed 18 experienced peer group leaders who had conducted a multisession human immunodeficiency virus (HIV) prevention peer group intervention in rural Malawi.
Methods
We used inductive content analysis and comparisons within and between cases. Findings: Three major themes were identified. All leaders said they experienced personal changes in their knowledge, attitudes, or HIV prevention behaviors. They described interacting with family, neighbors, and friends, and speaking at church or community meetings, to discuss HIV prevention issues. They increased their self-efficacy to engage others in sensitive HIV prevention issues, developed a self-identity as a change agent, and came to be recognized in their community as trustworthy advisors about HIV and acquired immunodeficiency syndrome. These three themes, taken together, form the meta-theme of psychological empowerment.
Conclusion
Being a peer group leader empowered the leaders as change agents for HIV prevention and had impacts in the community after the intervention ended, potentially increasing the long-term effectiveness and cost effectiveness of peer group interventions.
Clinical Relevance
Healthcare workers and community volunteers who led HIV prevention sessions continued HIV prevention activities in the community and workplace after the program ended. Training health workers as volunteer HIV prevention leaders offers a strategy to bring HIV prevention to limited-resource settings, despite health worker shortages.
doi:10.1111/jnu.12031
PMCID: PMC3770756  PMID: 23590557
Community-public health-environmental health; primary health care; HIV/AIDS; international health or global health; qualitative methodology
20.  Diffusion of a collaborative care model in primary care: a longitudinal qualitative study 
BMC Family Practice  2013;14:3.
Background
Although collaborative team models (CTM) improve care processes and health outcomes, their diffusion poses challenges related to difficulties in securing their adoption by primary care clinicians (PCPs). The objectives of this study are to understand: (1) how the perceived characteristics of a CTM influenced clinicians' decision to adopt -or not- the model; and (2) the model's diffusion process.
Methods
We conducted a longitudinal case study based on the Diffusion of Innovations Theory. First, diffusion curves were developed for all 175 PCPs and 59 nurses practicing in one borough of Paris. Second, semi-structured interviews were conducted with a representative sample of 40 PCPs and 15 nurses to better understand the implementation dynamics.
Results
Diffusion curves showed that 3.5 years after the start of the implementation, 100% of nurses and over 80% of PCPs had adopted the CTM. The dynamics of the CTM's diffusion were different between the PCPs and the nurses. The slopes of the two curves are also distinctly different. Among the nurses, the critical mass of adopters was attained faster, since they adopted the CTM earlier and more quickly than the PCPs. Results of the semi-structured interviews showed that these differences in diffusion dynamics were mostly founded in differences between the PCPs' and the nurses' perceptions of the CTM's compatibility with norms, values and practices and its relative advantage (impact on patient management and work practices). Opinion leaders played a key role in the diffusion of the CTM among PCPs.
Conclusion
CTM diffusion is a social phenomenon that requires a major commitment by clinicians and a willingness to take risks; the role of opinion leaders is key. Paying attention to the notion of a critical mass of adopters is essential to developing implementation strategies that will accelerate the adoption process by clinicians.
doi:10.1186/1471-2296-14-3
PMCID: PMC3558442  PMID: 23289966
Primary care; Primary care physician; Nurses; Chronic disease; Collaboration; Health service research; Diffusion of innovation
21.  Improving the management and referral of patients with transient ischaemic attacks: a change strategy for a health community 
Problem
Rapid referral and management of patients with transient ischaemic attacks is a key component in the national strategy for stroke prevention. However, patients with transient ischaemic attacks are poorly identified and undertreated.
Design and setting
Before and after evaluation of quality improvement programme with controlled comparison in three primary care trusts reflecting diverse populations and organisational structures in an urban district in the North of England.
Key measures for improvement
The proportion of patients receiving antiplatelet drugs and safe driving advice on referral to a speciality clinic, and the numbers of referrals, adjusted for age, to the specialist clinic before and after the improvement programme.
Strategies for change
Interviews with patient and professionals to identify gaps and barriers to good practice; development of evidence based guidelines for the management of patients with transient ischaemic attacks; interactive multidisciplinary workshops for each primary care trust with feedback of individual audit results of referral practice; outreach visits to teams who were unable to attend the workshops; referral templates and desktop summaries to provide reminders of the guidelines to clinicians; incorporation of standards into professional contracts.
Effects of change
A significant improvement occurred in identification and referral of patients with transient ischaemic attacks to specialist clinics, with a 41% increase in referrals from trained practices compared with control practices. There were also significant improvements in the early treatment and safety advice provided to patients before referral.
Lessons learnt
A strategic approach to effective quality improvement across a diverse health community is feasible and achievable. Careful planning with patient and professional involvement to develop a tailored and multifaceted quality improvement programme to implement evidence based practice can work in very different primary care settings. Key components of the effectiveness of the model include contextual analysis, strong professional support, clear recommendations based on robust evidence, simplicity of adoption, good communication, and use of established networks and opinion leaders.
doi:10.1136/qshc.2005.014704
PMCID: PMC2564006  PMID: 16456203
quality improvement report; stroke prevention; clinical guidelines; transient ischaemic attacks; implementation of change
22.  Development and verification of an agent-based model of opinion leadership 
Background
The use of opinion leaders is a strategy used to speed the process of translating research into practice. Much is still unknown about opinion leader attributes and activities and the context in which they are most effective. Agent-based modeling is a methodological tool that enables demonstration of the interactive and dynamic effects of individuals and their behaviors on other individuals in the environment. The purpose of this study was to develop and test an agent-based model of opinion leadership. The details of the design and verification of the model are presented.
Methods
The agent-based model was developed by using a software development platform to translate an underlying conceptual model of opinion leadership into a computer model. Individual agent attributes (for example, motives and credibility) and behaviors (seeking or providing an opinion) were specified as variables in the model in the context of a fictitious patient care unit. The verification process was designed to test whether or not the agent-based model was capable of reproducing the conditions of the preliminary conceptual model. The verification methods included iterative programmatic testing (‘debugging’) and exploratory analysis of simulated data obtained from execution of the model. The simulation tests included a parameter sweep, in which the model input variables were adjusted systematically followed by an individual time series experiment.
Results
Statistical analysis of model output for the 288 possible simulation scenarios in the parameter sweep revealed that the agent-based model was performing, consistent with the posited relationships in the underlying model. Nurse opinion leaders act on the strength of their beliefs and as a result, become an opinion resource for their uncertain colleagues, depending on their perceived credibility. Over time, some nurses consistently act as this type of resource and have the potential to emerge as opinion leaders in a context where uncertainty exists.
Conclusions
The development and testing of agent-based models is an iterative process. The opinion leader model presented here provides a basic structure for continued model development, ongoing verification, and the establishment of validation procedures, including empirical data collection.
doi:10.1186/s13012-014-0136-6
PMCID: PMC4177706  PMID: 25260260
23.  Design and integration of ethnography within an international behavior change HIV/sexually transmitted disease prevention trial 
AIDS (London, England)  2007;21(Suppl 2):S37-S48.
Objective
To use a common ethnographic study protocol across five countries to provide data to confirm social and risk settings and risk behaviors, develop the assessment instruments, tailor the intervention, design a process evaluation of the intervention, and design an understandable informed consent process.
Design
Methods determined best for capturing the core data elements were selected. Standards for data collection methods were established to enable comparable implementation of the ethnographic study across the five countries.
Methods
The methods selected were participant observation, focus groups, open-ended interviews, and social mapping. Standards included adhering to core data elements, number of participants, mode of data collection, type of data collection instrument, number of data collectors at each type of activity, duration of each type of activity, and type of informed consent administered. Sites had discretion in selecting which methods to use to obtain specific data.
Results
The ethnographic studies provided input to the Trial’s methods for data collection, described social groups in the target communities, depicted sexual practices, and determined core opinion leader characteristics; thus providing information that drove the adaptation of the intervention and facilitated the selection of venues, behavioral outcomes, and community popular opinion leaders (C-POLs).
Conclusion
The described rapid ethnographic approach worked well across the five countries, where findings allowed local adaptation of the intervention. When introducing the C-POL intervention in new areas, local non-governmental and governmental community and health workers can use this rapid ethnographic approach to identify the communities, social groups, messages, and C-POLs best suited for local implementation.
doi:10.1097/01.aids.0000266456.03397.d3
PMCID: PMC2610667  PMID: 17413263
behavioral interventions; culture; developing nations; ethnography; qualitative data
24.  Social networks and implementation of evidence-based practices in public youth-serving systems: a mixed-methods study 
Background
The present study examines the structure and operation of social networks of information and advice and their role in making decisions as to whether to adopt new evidence-based practices (EBPs) among agency directors and other program professionals in 12 California counties participating in a large randomized controlled trial.
Methods
Interviews were conducted with 38 directors, assistant directors, and program managers of county probation, mental health, and child welfare departments. Grounded-theory analytic methods were used to identify themes related to EBP adoption and network influences. A web-based survey collected additional quantitative information on members of information and advice networks of study participants. A mixed-methods approach to data analysis was used to create a sociometric data set (n = 176) for examination of associations between advice seeking and network structure.
Results
Systems leaders develop and maintain networks of information and advice based on roles, responsibility, geography, and friendship ties. Networks expose leaders to information about EBPs and opportunities to adopt EBPs; they also influence decisions to adopt EBPs. Individuals in counties at the same stage of implementation accounted for 83% of all network ties. Networks in counties that decided not to implement a specific EBP had no extra-county ties. Implementation of EBPs at the two-year follow-up was associated with the size of county, urban versus rural counties, and in-degree centrality. Collaboration was viewed as critical to implementing EBPs, especially in small, rural counties where agencies have limited resources on their own.
Conclusions
Successful implementation of EBPs requires consideration and utilization of existing social networks of high-status systems leaders that often cut across service organizations and their geographic jurisdictions.
Trial Registration
NCT00880126
doi:10.1186/1748-5908-6-113
PMCID: PMC3216853  PMID: 21958674
25.  What attributes of patients affect their involvement in safety? A key opinion leaders’ perspective 
BMJ Open  2013;3(8):e003104.
Objective
Little is known about which attributes the patients need when they wish to maximise their capability to partner safely in healthcare. We aimed to identify these attributes from the perspective of key opinion leaders.
Design
Delphi study involving indirect group interaction through a structured two-round survey.
Setting
International electronic survey.
Participants
11 (65%) of the 17 invited internationally recognised experts on patient safety completed the study.
Outcome measures
50 patient attributes were rated by the Delphi panel for their ability to contribute maximally to safe health care.
Results
The panellists agreed that 13 attributes are important for patients who want to maximise the role of safe partners. These domains relate to: autonomy, awareness, conscientiousness, knowledge, rationality, responsiveness and vigilance; for example, important attributes of autonomy include the ability to speak up, freedom to act and ability to act independently. Spanning seven domains, the attributes emphasise intellectual attributes and, to a lesser extent, moral attributes.
Conclusions
Whereas current safety discourses emphasise attributes of professionals, this study identified the patient attributes which key opinion leaders believe can maximise the capability of patients to partner safely in healthcare. Further research is needed that asks patients about the attributes they believe are most important.
doi:10.1136/bmjopen-2013-003104
PMCID: PMC3752058  PMID: 23943773
Medical Ethics

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