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1.  Patients Who Share Transparent Visit Notes With Others: Characteristics, Risks, and Benefits 
Inviting patients to read their primary care visit notes may improve communication and help them engage more actively in their health care. Little is known about how patients will use the opportunity to share their visit notes with family members or caregivers, or what the benefits might be.
Our goal was to evaluate the characteristics of patients who reported sharing their visit notes during the course of the study, including their views on associated benefits and risks.
The OpenNotes study invited patients to access their primary care providers’ visit notes in Massachusetts, Pennsylvania, and Washington. Pre- and post-intervention surveys assessed patient demographics, standardized measures of patient-doctor communication, sharing of visit notes with others during the study, and specific health behaviors reflecting the potential benefits and risks of offering patients easy access to their visit notes.
More than half (55.43%, 2503/4516) of the participants who reported viewing at least one visit note would like the option of letting family members or friends have their own Web access to their visit notes, and 21.70% (980/4516) reported sharing their visit notes with someone during the study year. Men, and those retired or unable to work, were significantly more likely to share visit notes, and those sharing were neither more nor less concerned about their privacy than were non-sharers. Compared to participants who did not share clinic notes, those who shared were more likely to report taking better care of themselves and taking their medications as prescribed, after adjustment for age, gender, employment status, and study site.
One in five OpenNotes patients shared a visit note with someone, and those sharing Web access to their visit notes reported better adherence to self-care and medications. As health information technology systems increase patients’ ability to access their medical records, facilitating access to caregivers may improve perceived health behaviors and outcomes.
PMCID: PMC4260006  PMID: 25405911
open access to information; caregivers; health behavior; information sharing
2.  Patient Access to Online Visit Notes: Perceptions of Doctors and Patients at an Urban HIV/AIDS Clinic 
Patients living with HIV/AIDS face large societal and medical challenges. Inviting patients to read their doctors’ visit notes via secure electronic portals may empower patients and improve health. We investigated whether utilization and perceptions about access to doctors’ notes differed among doctors and patients in an HIV/AIDS clinic versus primary care setting. We analyzed pre- and 1-year postintervention data from 99 doctors and 3819 patients. HIV clinic patients did not report differences in perceived risks and benefits compared to primary care clinic patients, however, they were more likely to share notes with friends (33% versus 9%, P = .002), other health professionals (24% versus 8%, P = .03), or another doctor (38% versus 9%, P < .0001). HIV clinic doctors were less likely than primary care doctors to change=the level of candor in visit notes (P < .04). Our findings suggest that HIV clinic patients and doctors are ready to share visit notes online.
PMCID: PMC4194185  PMID: 24729072
human immunodeficiency virus (HIV); visit notes; electronic health records; health information technology; personal health records
3.  Use of Web-based Shared Medical Records among Patients with HIV 
The American journal of managed care  2013;19(4):e114-e124.
Patient websites with secure access to shared electronic medical records (SMR) may support care of patients with HIV, particularly during heightened need. However, groups disproportionately affected by HIV may be less likely to use them.
Objective & Design
We performed an observational cohort study to compare use of seven SMR features by adult patients with HIV. Automated data from the 36 months following SMR implementation were assessed in two integrated delivery systems.
Participants, Main Measures, Key Results
Most (3888/7398) patients used the SMR at least once. Users were most likely to view medical test results (49%), use secure messaging (43%), or request appointments (31%) or medication refills (30%). Initial use was associated with a new prescription for antiretroviral therapy [rate ratio (RR) 1.65, p <0.001], a recent change to CD4+ count <200 cells/μL (RR 1.34, p <0.02), a new HIV RNA ≥75 copies/mL (RR 1.63, p <0.001), or a recent increase in non-HIV comorbidity score (RR 1.49, p = 0.0001). In age-, sex-, and comorbidity-adjusted analyses, users were less likely to be women (RR 0.49, p=0.0001), injection drug users (RR 0.59, p = 0.0001), or from lower-socioeconomic neighborhoods (RR 0.68, p = 0.0001). Compared with nonusers, users were less likely to be Black (RR 0.38, p = 0.0001), Hispanic (RR 0.52, p = 0.0001) or Asian/Pacific Islander (RR 0.59, p = 0.001).
SMR use was higher among those with HIV who had indicators of recent increases in health care need and lower among several vulnerable populations. Health care providers and systems should support SMR use among patients with HIV as part of broader efforts to improve overall access to care.
PMCID: PMC3951974  PMID: 23725449
HIV; personal health record; health care disparities
4.  Improving BP Control Through Electronic Communications: An Economic Evaluation 
Web-based collaborative approaches to managing chronic illness show promise for both improving health outcomes and increasing the efficiency of the healthcare system.
Analyze the cost-effectiveness of the Electronic Communications and Home Blood Pressure Monitoring to Improve Blood Pressure Control (e-BP) study, a randomized controlled trial that used a patient-shared electronic medical record, home blood pressure (BP) monitoring, and web-based pharmacist care to improve BP control (<140/90 mm Hg).
Study Design
Incremental cost-effectiveness analysis conducted from a health plan perspective.
Cost-effectiveness of home BP monitoring and web-based pharmacist care estimated for percent change in patients with controlled BP and cost per mm Hg in diastolic and systolic BP relative to usual care and home BP monitoring alone.
A 1% improvement in number of patients with controlled BP using home BP monitoring and web-based pharmacist care—the e-BP program—costs $16.65 (95% confidence interval: 15.37- 17.94) relative to home BP monitoring and web training alone. Each mm HG reduction in systolic and diastolic BP achieved through the e-BP program costs $65.29 (59.91-70.67) relative to home BP monitoring and web tools only. Life expectancy was increased at an incremental cost of $1850 (1635-2064) and $2220 (1745-2694) per year of life saved for men and women, respectively.
Web-based collaborative care can be used to achieve BP control at a relatively low cost. Future research should examine the cost impact of potential long-term clinical improvements.
PMCID: PMC3938103  PMID: 24304254
5.  Online Access to Doctors' Notes: Patient Concerns About Privacy 
Offering patients online access to medical records, including doctors’ visit notes, holds considerable potential to improve care. However, patients may worry about loss of privacy when accessing personal health information through Internet-based patient portals. The OpenNotes study provided patients at three US health care institutions with online access to their primary care doctors’ notes and then collected survey data about their experiences, including their concerns about privacy before and after participation in the intervention.
To identify patients’ attitudes toward privacy when given electronic access to their medical records, including visit notes.
The design used a nested cohort study of patients surveyed at baseline and after a 1-year period during which they were invited to read their visit notes through secure patient portals. Participants consisted of 3874 primary care patients from Beth Israel Deaconess Medical Center (Boston, MA), Geisinger Health System (Danville, PA), and Harborview Medical Center (Seattle, WA) who completed surveys before and after the OpenNotes intervention. The measures were patient-reported levels of concern regarding privacy associated with online access to visit notes.
32.91% of patients (1275/3874 respondents) reported concerns about privacy at baseline versus 36.63% (1419/3874 respondents) post-intervention. Baseline concerns were associated with non-white race/ethnicity and lower confidence in communicating with doctors, but were not associated with choosing to read notes or desire for continued online access post-intervention (nearly all patients with notes available chose to read them and wanted continued access). While the level of concern among most participants did not change during the intervention, 15.54% (602/3874 respondents, excluding participants who responded “don’t know”) reported more concern post-intervention, and 12.73% (493/3874 respondents, excluding participants who responded “don’t know”) reported less concern.
When considering online access to visit notes, approximately one-third of patients had concerns about privacy at baseline and post-intervention. These perceptions did not deter participants from accessing their notes, suggesting that the benefits of online access to medical records may outweigh patients’ perceived risks to privacy.
PMCID: PMC3785972  PMID: 24072335
electronic medical records; patient access to records; patient portals; privacy; consumer health informatics; personal health records
6.  An Exploration of the Potential Reach of Smartphones in Diabetes 
Although smartphones bear potential to improve diabetes self-management, the reach of smartphones in diabetic populations remains uncertain. Using survey data from the Pew Research Center, we compared smartphone use in individuals with and without diabetes, and determined factors associated with smartphone use among those with diabetes. Of the 2989 adults surveyed, 1360 were smartphone users, and 332 individuals had diabetes. Compared to individuals without diabetes, adults with diabetes were less likely to be smartphone users (relative risk of 0.43, 95% CI 0.31 to 0.54) even after adjusting for age, race, ethnicity and socioeconomic status (adjusted RR of 0.78, 95%CI 0.57–0.98). Among individuals with diabetes, high income, younger age and online health information seeking were associated with higher smartphone use. While smartphones can reach subgroups for diabetes care and prevention (racial/ethnic minorities, newly diagnosed individuals), studies are needed to understand this current difference in smartphone use.
PMCID: PMC4419894  PMID: 25954331
7.  A Template for Authoring and Adapting Genomic Medicine Content in the eMERGE Infobutton Project 
The Electronic Medical Records and Genomics (eMERGE) Network is a national consortium that is developing methods and best practices for using the electronic health record (EHR) for genomic medicine and research. We conducted a multi-site survey of information resources to support integration of pharmacogenomics into clinical care. This work aimed to: (a) characterize the diversity of information resource implementation strategies among eMERGE institutions; (b) develop a master template containing content topics of important for genomic medicine (as identified by the DISCERN-Genetics tool); and (c) assess the coverage of content topics among information resources developed by eMERGE institutions. Given that a standard implementation does not exist and sites relied on a diversity of information resources, we identified a need for a national effort to efficiently produce sharable genomic medicine resources capable of being accessed from the EHR. We discuss future areas of work to prepare institutions to use infobuttons for distributing standardized genomic content.
PMCID: PMC4419923  PMID: 25954402
8.  Engineering for reliability in at-home chronic disease management 
Individuals with chronic conditions face challenges with maintaining lifelong adherence to self-management activities. Although reminders can help support the cognitive demands of managing daily and future health tasks, we understand little of how they fit into people’s daily lives. Utilizing a maximum variation sampling method, we interviewed and compared the experiences of 20 older adults with diabetes and 19 mothers of children with asthma to understand reminder use for at-home chronic disease management. Based on our participants’ experiences, we contend that many self-management failures should be viewed as systems failures, rather than individual failures and non-compliance. Furthermore, we identify key principles from reliability engineering that both explain current behavior and suggest strategies to improve patient reminder systems.
PMCID: PMC4419963  PMID: 25954384
9.  Patient–provider communication and trust in relation to use of an online patient portal among diabetes patients: The Diabetes and Aging Study 
Patient–provider relationships influence diabetes care; less is known about their impact on online patient portal use. Diabetes patients rated provider communication and trust. In this study, we linked responses to electronic medical record data on being a registered portal user and using secure messaging (SM). We specified regression models to evaluate main effects on portal use, and subgroup analyses by race/ethnicity and age. 52% of subjects were registered users; among those, 36% used SM. Those reporting greater trust were more likely to be registered users (relative  risk (RR)=1.14) or SM users (RR=1.29). In subgroup analyses, increased trust was associated with being a registered user among white, Latino, and older patients, as well as SM use among white patients. Better communication ratings were also related to being a registered user among older patients. Since increased trust and communication were associated with portal use within subgroups, this suggests that patient-provider relationships encourage portal engagement.
PMCID: PMC3822118  PMID: 23676243
patient portals; patient-provider relationship; diabetes; race/ethnicity; age
Journal of community health  2003;28(1):41-57.
Chinese American immigrants are a growing part of the United States population. Cervical cancer is a significant cause of morbidity and mortality among Chinese Americans. Pap smear testing is less common in Chinese American immigrants than in the general population. During 1999, we conducted a community-based survey of Chinese American women living in Seattle. We assessed knowledge of cervical cancer risk factors and history of Pap smear testing along with socioeconomic and acculturation characteristics. The overall estimated response rate was 64%, and the cooperation rate was 72%. Our study sample included 472 women. Most cervical cancer risk factors were recognized by less than half of our participants. Factors independently associated with knowledge of cervical cancer risk factors included marital status, employment, and education. Respondents with the highest knowledge had greater odds of ever receiving a Pap smear, compared to those respondents with the lowest knowledge (OR 2.5; 95% CI: 1.1,5.8). Our findings suggest a need for increased recognition of cervical cancer risk factors among Chinese American immigrants. Culturally and linguistically appropriate educational interventions for cervical cancer risk factors should be developed, implemented and evaluated.
PMCID: PMC1618780  PMID: 12570172
cervix neoplasms; Chinese Americans; risk factors
11.  Glycemic Control Associated With Secure Patient-Provider Messaging Within a Shared Electronic Medical Record 
Diabetes Care  2013;36(9):2726-2733.
To study differences in glycemic control and HbA1c testing associated with use of secure electronic patient-provider messaging. We hypothesized that messaging use would be associated with better glycemic control and a higher rate of adherence to HbA1c testing recommendations.
Retrospective observational study of secure messaging at Group Health, a large nonprofit health care system. Our analysis included adults with diabetes who had registered for access to a shared electronic medical record (SMR) between 2003 and 2006. We fit log-linear regression models, using generalized estimating equations, to estimate the adjusted rate ratio of meeting three indicators of glycemic control (HbA1c <7%, HbA1c <8%, and HbA1c >9%) and HbA1c testing adherence by level of previous messaging use. Multiple imputation and inverse probability weights were used to account for missing data.
During the study period, 6,301 adults with diabetes registered for access to the SMR. Of these individuals, 74% used messaging at least once during that time. Frequent use of messaging during the previous calendar quarter was associated with a higher rate of good glycemic control (HbA1c <7%: rate ratio, 1.26 [95% CI, 1.15–1.37]) and a higher rate testing adherence (1.20 [1.15–1.25]).
Among SMR users, recent and frequent messaging use was associated with better glycemic control and a higher rate of HbA1c testing adherence. These results suggest that secure messaging may facilitate important processes of care and help some patients to achieve or maintain adequate glycemic control.
PMCID: PMC3747898  PMID: 23628618
13.  Patient Ability and Willingness to Participate in a Web-Based Intervention to Improve Hypertension Control 
Patient-shared electronic health records provide opportunities for care outside of office visits. However, those who might benefit may be unable to or choose not to use these resources, while others might not need them.
Electronic Communications and Home Blood Pressure Monitoring (e-BP) was a randomized trial that demonstrated that Web-based pharmacist care led to improved blood pressure (BP) control. During recruitment we attempted to contact all patients with hypertension from 10 clinics to determine whether they were eligible and willing to participate. We wanted to know whether particular subgroups, particularly those from vulnerable populations, were less willing to participate or unable to because they lacked computer access.
From 2005 to 2006, we sent invitation letters to and attempted to recruit 9298 patients with hypertension. Eligibility to participate in the trial included access to a computer and the Internet, an email address, and uncontrolled BP (BP ≥ 140/90 mmHg). Generalized linear models within a modified Poisson regression framework were used to estimate the relative risk (RR) of ineligibility due to lack of computer access and of having uncontrolled BP.
We were able to contact 95.1% (8840/9298) of patients. Those refusing participation (3032/8840, 34.3%) were significantly more likely (P < .05) to be female, be nonwhite, have lower levels of education, and have Medicaid insurance. Among patients who answered survey questions, 22.8% (1673/7354) did not have computer access. Older age, minority race, and lower levels of education were risk factors for lack of computer access, with education as the strongest predictor (RR 2.63, 95% CI 2.30-3.01 for those with a high school degree compared to a college education). Among hypertensive patients with computer access who were willing to participate, African American race (RR 1.22, 95% CI 1.06-1.40), male sex (RR 1.28, 95% CI 1.18-1.38), and obesity (RR 1.53, 95% CI 1.31-1.79) were risk factors for uncontrolled BP.
Older age, lower socioeconomic status, and lower levels of education were associated with decreased access to and willingness to participate in a Web-based intervention to improve hypertension control. Failure to ameliorate this may worsen health care disparities.
Trial Registration NCT00158639; (Archived by WebCite at
PMCID: PMC3217242  PMID: 21371993
electronic medical record
14.  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.
PMCID: PMC3909653  PMID: 24030437
electronic health records; genomics; health information technology; personalized medicine; stakeholder engagement; translational medical research
15.  Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead 
Annals of internal medicine  2012;157(7):461-470.
Little information exists about what primary care physicians (PCPs) and patients experience if patients are invited to read their doctors’ office notes.
To evaluate the effect on doctors and patients of facilitating patient access to visit notes over secure Internet portals.
Quasi-experimental trial of PCPs and patient volunteers in a year-long program that provided patients with electronic links to their doctors’ notes.
Primary care practices at Beth Israel Deaconess Medical Center (BIDMC) in Massachusetts, Geisinger Health System (GHS) in Pennsylvania, and Harborview Medical Center (HMC) in Washington.
105 PCPs and 13 564 of their patients who had at least 1 completed note available during the intervention period.
Portal use and electronic messaging by patients and surveys focusing on participants’ perceptions of behaviors, benefits, and negative consequences.
11 797 of 13 564 patients with visit notes available opened at least 1 note (84% at BIDMC, 92% at GHS, and 47% at HMC). Of 5391 patients who opened at least 1 note and completed a postintervention survey, 77% to 87% across the 3 sites reported that open notes helped them feel more in control of their care; 60% to 78% of those taking medications reported increased medication adherence; 26% to 36% had privacy concerns; 1% to 8% reported that the notes caused confusion, worry, or offense; and 20% to 42% reported sharing notes with others. The volume of electronic messages from patients did not change. After the intervention, few doctors reported longer visits (0% to 5%) or more time addressing patients’ questions outside of visits (0% to 8%), with practice size having little effect; 3% to 36% of doctors reported changing documentation content; and 0% to 21% reported taking more time writing notes. Looking ahead, 59% to 62% of patients believed that they should be able to add comments to a doctor’s note. One out of 3 patients believed that they should be able to approve the notes’ contents, but 85% to 96% of doctors did not agree. At the end of the experimental period, 99% of patients wanted open notes to continue and no doctor elected to stop.
Only 3 geographic areas were represented, and most participants were experienced in using portals. Doctors volunteering to participate and patients using portals and completing surveys may tend to offer favorable feedback, and the response rate of the patient surveys (41%) may further limit generalizability.
Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption.
Primary Funding Source
The Robert Wood Johnson Foundation, the Drane Family Fund, the Richard and Florence Koplow Charitable Foundation, and the National Cancer Institute.
PMCID: PMC3908866  PMID: 23027317
16.  Randomized Trial of Depression Follow-Up Care by Online Messaging 
Quality of antidepressant treatment remains disturbingly poor. Rates of medication adherence and follow-up contact are especially low in primary care, where most depression treatment begins. Telephone care management programs can address these gaps, but reliance on live contact makes such programs less available, less timely, and more expensive.
Evaluate the feasibility, acceptability, and effectiveness of a depression care management program delivered by online messaging through an electronic medical record.
Randomized controlled trial comparing usual primary care treatment to primary care supported by online care management
Nine primary care clinics of an integrated health system in Washington state
Two hundred and eight patients starting antidepressant treatment for depression.
Three online care management contacts with a trained psychiatric nurse. Each contact included a structured assessment (severity of depression, medication adherence, side effects), algorithm-based feedback to the patient and treating physician, and as-needed facilitation of follow-up care. All communication occurred through secure, asynchronous messages within an electronic medical record.
Main Measures
An online survey approximately five months after randomization assessed the primary outcome (depression severity according to the Symptom Checklist scale) and satisfaction with care, a secondary outcome. Additional secondary outcomes (antidepressant adherence and use of health services) were assessed using computerized medical records.
Key Results
Patients offered the program had higher rates of antidepressant adherence (81% continued treatment more than 3 months vs. 61%, p = 0.001), lower Symptom Checklist depression scores after 5 months (0.95 vs. 1.17, p = 0.043), and greater satisfaction with depression treatment (53% “very satisfied” vs. 33%, p = 0.004).
The trial was conducted in one integrated health care system with a single care management nurse. Results apply only to patients using online messaging.
Our findings suggest that organized follow-up care for depression can be delivered effectively and efficiently through online messaging.
PMCID: PMC3138593  PMID: 21384219
depression; randomized; follow-up; online messaging
17.  Web-Based Collaborative Care for Type 2 Diabetes 
Diabetes Care  2009;32(2):234-239.
OBJECTIVE—To test Web-based care management of glycemic control using a shared electronic medical record with patients who have type 2 diabetes.
RESEARCH DESIGN AND METHODS—We conducted a trial of 83 adults with type 2 diabetes randomized to receive usual care plus Web-based care management or usual care alone between August 2002 and May 2004. All patients had GHb ≥7.0%, had Web access from home, and could use a computer with English language–based programs. Intervention patients received 12 months of Web-based care management. The Web-based program included patient access to electronic medical records, secure e-mail with providers, feedback on blood glucose readings, an educational Web site, and an interactive online diary for entering information about exercise, diet, and medication. The primary outcome was change in GHb.
RESULTS—GHb levels declined by 0.7% (95% CI 0.2−1.3) on average among intervention patients compared with usual-care patients. Systolic blood pressure, diastolic blood pressure, total cholesterol levels, and use of in-person health care services did not differ between the two groups.
CONCLUSIONS—Care management delivered through secure patient Web communications improved glycemic control in type 2 diabetes.
PMCID: PMC2628685  PMID: 19017773
18.  Development and Evaluation of CAHPS® Questions to Assess the Impact of Health Information Technology on Patient Experiences with Ambulatory Care 
Medical care  2012;50(Suppl):S11-S19.
Little is known about whether health information technology (HIT) affects patient experiences with health care.
To develop HIT questions that assess patients care experiences not evaluated by existing ambulatory CAHPS measures.
Research Design
We reviewed published articles and conducted focus groups and cognitive testing to develop survey questions. We collected data, using mail and the internet, from patients of 69 physicians receiving care at an academic medical center and two regional integrated delivery systems in late 2009 and 2010. We evaluated questions and scales about HIT using factor analysis, item-scale correlations, and reliability (internal consistency and physician-level) estimates.
We found support for three HIT composites: doctor use of computer (2 items), e-mail (2 items), and helpfulness of provider’s website (4 items). Corrected item-scale correlations were 0.37 for the two doctor use of computer items and 0.71 for the two e-mail items, and ranged from 0.50 to 0.60 for the provider’s website items. Cronbach’s alpha was high for e-mail (0.83) and provider’s website (0.75), but only 0.54 for doctor use of computer. As few as 50 responses per physician would yield reliability of 0.70 for e-mail and provider’s website. Two HIT composites, doctor use of computer (p<0.001) and provider’s website (p=0.02), were independent predictors of overall ratings of doctors.
New CAHPS HIT items were identified that measure aspects of patient experiences not assessed by the CAHPS C&G 1.0 survey.
PMCID: PMC3525454  PMID: 23064271
CAHPS®; health information technology; personal health records; patient experiences of care
19.  Inviting Patients to Read Their Doctors' Notes: Patients and Doctors Look Ahead 
Annals of internal medicine  2011;155(12):811-819.
Little is known about what primary care physicians (PCPs) and patients would expect if patients were invited to read their doctors' office notes.
To explore attitudes toward potential benefits or harms if PCPs offered patients ready access to visit notes.
The PCPs and patients completed surveys before joining a voluntary program that provided electronic links to doctors' notes.
Primary care practices in 3 U.S. states.
Participating and nonparticipating PCPs and adult patients at primary care practices in Massachusetts, Pennsylvania, and Washington.
Doctors' and patients' attitudes toward and expectations of open visit notes, their ideas about the potential benefits and risks, and demographic characteristics.
110 of 114 participating PCPs (96%), 63 of 140 nonparticipating PCPs (45%), and 37 856 of 90 826 patients (42%) completed surveys. Overall, 69% to 81% of participating PCPs across the 3 sites and 92% to 97% of patients thought open visit notes were a good idea, compared with 16% to 33% of nonparticipating PCPs. Similarly, participating PCPs and patients generally agreed with statements about potential benefits of open visit notes, whereas nonparticipating PCPs were less likely to agree. Among participating PCPs, 74% to 92% anticipated improved communication and patient education, in contrast to 45% to 67% of nonparticipating PCPs. More than one half of participating PCPs (50% to 58%) and most nonparticipating PCPs (88% to 92%) expected that open visit notes would result in greater worry among patients; far fewer patients concurred (12% to 16%). Thirty-six percent to 50% of participating PCPs and 83% to 84% of nonparticipating PCPs anticipated more patient questions between visits. Few PCPs (0% to 33%) anticipated increased risk for lawsuits. Patient enthusiasm extended across age, education, and health status, and 22% anticipated sharing visit notes with others, including other doctors.
Access to electronic patient portals is not widespread, and participation was limited to patients using such portals. Response rates were higher among participating PCPs than nonparticipating PCPs; many participating PCPs had small patient panels.
Among PCPs, opinions about open visit notes varied widely in terms of predicting the effect on their practices and benefits for patients. In contrast, patients expressed considerable enthusiasm and few fears, anticipating both improved understanding and more involvement in care. Sharing visit notes has broad implications for quality of care, privacy, and shared accountability.
PMCID: PMC3772715  PMID: 22184688
20.  Patient Web Services Integrated with a Shared Medical Record: Patient Use and Satisfaction 
This study sought to describe the evolution, use, and user satisfaction of a patient Web site providing a shared medical record between patients and health professionals at Group Health Cooperative, a mixed-model health care financing and delivery organization based in Seattle, Washington.
This study used a retrospective, serial, cross-sectional study from September 2002 through December 2005 and a mailed satisfaction survey of a random sampling of 2,002 patients.
This study measured the adoption and use of a patient Web site (MyGroupHealth) from September 2002 through December 2005.
As of December 2005, 25% (105,047) of all Group Health members had registered and completed an identification verification process enabling them to use all of the available services on MyGroupHealth. Identification verification was more common among patients receiving care in the Integrated Delivery System (33%) compared with patients receiving care in the network (7%). As of December 2005, unique monthly user rates per 1,000 adult members were the highest for review of medical test results (54 of 1,000), medication refills (44 of 1,000), after-visit-summaries (32 of 1,000), and patient–provider clinical messaging (31 of 1,000). The response rate for the patient satisfaction survey was 46% (n = 921); 94% of survey respondents were satisfied or very satisfied with MyGroupHealth overall. Patients reported highest satisfaction (satisfied or very satisfied) for medication refills (96%), patient–provider messaging (93%), and medical test results (86%).
Use and satisfaction with MyGroupHealth were greatest for accessing services and information involving ongoing, active care and patient–provider communication. Tight integration of Web services with clinical information systems and patient–provider relationships may be important in meeting the needs of patients.
PMCID: PMC2213480  PMID: 17712090
Electronic medical records (EMRS) allow for real time access to blood pressure information on a population basis and improved identification and treatment of individuals with hypertension. Despite the potential uses of the data available from EMRs relatively little research has examined the reliability of this data. To address this gap, we examined the reliability of blood pressure taken at primary care visits and recorded in an electronic medical record with those taken at a research study visit at which standard protocols were used to measure blood pressure among all adults as well as by gender and age. Systolic blood pressure (BP) averaged 3.7 (17.3) points and diastolic BP was 2.8 (10.6) points lower in the EMR than in the study visit across age and gender groups with all differences statistically significant. For this cohort of patients with a diagnosis of hypertension there was moderate correlation between BP measurements taken in clinic and at research. However BP control for individuals, as defined by a BP of less the 140 mm Hg systolic and 90 mm Hg diastolic, differed by almost 25%. Known variability of BP and clinic procedures for measuring and recording BP may account for these differences.
PMCID: PMC3211104  PMID: 22051427
blood pressure; hypertension; electronic medical record; reliability
22.  Defining Core Issues in Utilizing Information Technology to Improve Access: Evaluation and Research Agenda 
Journal of General Internal Medicine  2011;26(Suppl 2):623-627.
The Department of Veterans Affairs (VA) has been at the vanguard of information technology (IT) and use of comprehensive electronic health records. Despite the widespread use of health IT in the VA, there are still a variety of key questions that need to be answered in order to maximize the utility of IT to improve patient access to quality services. This paper summarizes the potential of IT to enhance healthcare access, key gaps in current evidence linking IT and access, and methodologic challenges for related research. We also highlight four key issues to be addressed when implementing and evaluating the impact of IT interventions on improving access to quality care: 1) Understanding broader needs/perceptions of the Veteran population and their caregivers regarding use of IT to access healthcare services and related information. 2) Understanding individual provider/clinician needs/perceptions regarding use of IT for patient access to healthcare. 3) System/Organizational issues within the VA and other organizations related to the use of IT to improve access. 4) IT integration and information flow with non-VA entities. While the VA is used as an example, the issues are salient for healthcare systems that are beginning to take advantage of IT solutions.
PMCID: PMC3191219  PMID: 21989613
access to care; medical informatics; veterans
23.  Effectiveness of Home Blood Pressure Monitoring, Web Communication, and Pharmacist Care on Hypertension Control 
Treating hypertension decreases mortality and disability from cardiovascular disease; but most hypertension remains inadequately controlled.
To determine if a new model of care that uses patient Web services, and adds home BP monitoring and pharmacist-assisted care, improves blood pressure control.
The Electronic Communications and Home Blood Pressure Monitoring (e-BP) study was a three-arm randomized controlled trial based on the Chronic Care Model and delivered over a secure patient website from June 2005 to December 2007.
Integrated group practice in Washington state.
778 participants age 25–75 with uncontrolled essential hypertension and Internet access.
Participants were randomly assigned to: (1) usual care (UC); (2) home BP monitoring and secure patient website training (BPM-Web); (3) this plus pharmacist care management delivered through Web communications (BPM-Web-Pharm).
Main Outcome Measures
Percentage of patients with controlled BP (<140/90 mm Hg) and changes in systolic and diastolic BP at 12 months.
730 patients (94%) completed the 1-year follow-up visit. Patients assigned to BPM-Web had a nonsignificant increase in the percentage with controlled BP (<140/90 mm Hg) compared to UC (36%; [95% CI, 30% to 42%] versus 31% [95% CI, 25% to 37%], P = .21). Adding Web-based pharmacy care to home BP monitoring (BPM-Web-Pharm) significantly increased the percentage with controlled BP (56% [95% CI, 49% to 62%]) compared to usual care (P <.001) and home BP monitoring (P <.001). Diastolic BP was also decreased with BPM-Web-Pharm compared to UC and BPM-Web; and systolic BP was decreased stepwise from UC to BPM-Web to BPM-Web-Pharm. For patients with baseline systolic BP ≥160 mm Hg, BPM-Web-Pharm had greater net reduction in systolic BP (−13.3 mm Hg [95% CI, −19.5 to −7.1], P <.001) and diastolic BP (−5.1 mm Hg [95% CI, −8.5 to −1.8], P <.001), and BP control improved by 34.2% (95% CI, 15.7% to 50.2%).
Pharmacist care management delivered through secure patient Web communications improved BP control in patients with hypertension.
PMCID: PMC2715866  PMID: 18577730
24.  Evaluating the impact of patients' online access to doctors' visit notes: designing and executing the OpenNotes project 
Providers and policymakers are pursuing strategies to increase patient engagement in health care. Increasingly, online sections of medical records are viewable by patients though seldom are clinicians' visit notes included. We designed a one-year multi-site trial of online patient accessible office visit notes, OpenNotes. We hypothesized that patients and primary care physicians (PCPs) would want it to continue and that OpenNotes would not lead to significant disruptions to doctors' practices.
Using a mixed methods approach, we designed a quasi-experimental study in 3 diverse healthcare systems in Boston, Pennsylvania, and Seattle. Two sites had existing patient internet portals; the third used an experimental portal. We targeted 3 key areas where we hypothesized the greatest impacts: beliefs and attitudes about OpenNotes, use of the patient internet portals, and patient-doctor communication. PCPs in the 3 sites were invited to participate in the intervention. Patients who were registered portal users of participating PCPs were given access to their PCPs' visit notes for one year. PCPs who declined participation in the intervention and their patients served as the comparison groups for the study. We applied the RE-AIM framework to our design in order to capture as comprehensive a picture as possible of the impact of OpenNotes. We developed pre- and post-intervention surveys for online administration addressing attitudes and experiences based on interviews and focus groups with patients and doctors. In addition, we tracked use of the internet portals before and during the intervention.
PCP participation varied from 19% to 87% across the 3 sites; a total of 114 PCPs enrolled in the intervention with their 22,000 patients who were registered portal users. Approximately 40% of intervention and non-intervention patients at the 3 sites responded to the online survey, yielding a total of approximately 38,000 patient surveys.
Many primary care physicians were willing to participate in this "real world" experiment testing the impact of OpenNotes on their patients and their practices. Results from this trial will inform providers, policy makers, and patients who contemplate such changes at a time of exploding interest in transparency, patient safety, and improving the quality of care.
PMCID: PMC3351950  PMID: 22500560
Patient access to records; Electronic health records; Primary care physicians; Internet; Medical records; Medical informatics; Patient participation
25.  Use of a Shared Medical Record With Secure Messaging by Older Patients With Diabetes 
Diabetes Care  2010;33(11):2314-2319.
Evaluate use of a web-based shared medical record (SMR) between older patients with diabetes and providers.
This was a retrospective cohort study. Health records and SMR use patterns of 6,185 enrollees aged ≥65 years with diabetes were analyzed from implementation of a SMR in August 2003 through December 2007. We analyzed baseline predictors of age, sex, distance from clinic, socioeconomic status, insulin use, morbidity, and associated primary care provider's (PCP) secure messaging use on patients' initial and subsequent use of the SMR. Changes in morbidity, PCP, or diabetes treatment were evaluated for impact on outcomes.
A total of 32.2% of enrollees used the SMR; median rate was 1.02 user-days/month. Numbers of users and rate of use continued to increase. In adjusted analyses, likelihood of SMR use was associated with younger age, male sex, and higher socioeconomic status neighborhood, as well as clinical characteristics of overall morbidity and assigned PCP's use of secure messaging. Initial SMR use was more likely within 3 months of an increase in morbidity (hazard ratio 1.61, 95% CI 1.28–2.01) and within 1 month of changing to a PCP with higher use (3.02, 1.66–5.51).
Four years after implementation, one-third of older individuals with diabetes had used the web-based SMR. Higher morbidity predicted initial and continued use of SMR services. Providers' use of the communication feature was associated with higher likelihood of SMR engagement by their patients. Web-based SMRs may be an effective form of non–visit-based health care for older individuals with diabetes.
PMCID: PMC2963486  PMID: 20739686

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