Reasons and Barriers for Using a Patient Portal: Survey Among Patients With Diabetes Mellitus

Background

The use of a Web portal for patients with diabetes mellitus to access their own personal health record may result in improved diabetes outcomes. However, the adoption by patients is slow. This may be caused by patient characteristics, but also by the content, layout, and promotion of the portal. Detailed knowledge about this could help increase patients’ participation in Web portals.

Objective

The aim was to study the opinions of patients with diabetes and identify perceived barriers to using a Web portal to optimize its use.

Methods

We conducted a survey among patients with type 1 and type 2 diabetes mellitus from 62 primary care practices and 1 outpatient hospital clinic in the central area of the Netherlands who all used the same electronic health record with a Web portal. Questionnaires about patient characteristics, opinions about reasons for use or nonuse, and about portal content were sent to 1500 patients with a login and 3000 patients without a login to the Web portal. Patient groups were stratified according to login frequency. Demographic and diabetes-related variables were analyzed with multivariable regression analysis.

Results

The total response rate was 66.63% (2391/4399); 1390 of 4399 patients (31.60%) were eligible for analysis. There were 413 regular users (login frequency more than once) and 758 nonusers (no login). Most nonusers (72.4%) stated that the main reason for not requesting a login was that they were unaware of the existence of the portal. Other barriers reported by patients were disinterest in managing their own disease (28.5%, 216/758) and feelings of inadequacy with the use of computers and Internet (11.6%, 88/758). Patients treated by a general practitioner were more frequently nonusers compared to patients treated by an internist (78.8%, 666/846 vs 28.3%, 92/325; P<.001) and more users than nonusers became aware of the Web portal through their physician (94.9%, 392/413 vs 48.8%, 102/209; P<.001). Nonusers perceived specific portal content as not as useful as regular users did, especially access to laboratory values (71.7%, 383/534 vs 92.3%, 372/403), rereading clinic visits (61.3%, 320/522 vs 89.6%, 360/402), e-messaging (52.0%, 262/504 vs 74.6%, 299/401), and uploading results to the glucose diary (45.3%, 229/506 vs 74.0%, 288/400; all P<.001).

Conclusions

Our study shows that unawareness of the patient portal is the main barrier of enrollment. Users and nonusers perceive the usefulness of the portal differently and do not have the same recommendations for additional functionalities. To increase patients’ participation in a Web portal, the unawareness of its existence and its possibilities need to be addressed by their health care professionals.     

Patient Portals and Patient Engagement: A State of the Science Review

Background

Patient portals (ie, electronic personal health records tethered to institutional electronic health records) are recognized as a promising mechanism to support greater patient engagement, yet questions remain about how health care leaders, policy makers, and designers can encourage adoption of patient portals and what factors might contribute to sustained utilization.

Objective

The purposes of this state of the science review are to (1) present the definition, background, and how current literature addresses the encouragement and support of patient engagement through the patient portal, and (2) provide a summary of future directions for patient portal research and development to meaningfully impact patient engagement.

Methods

We reviewed literature from 2006 through 2014 in PubMed, Ovid Medline, and PsycInfo using the search terms “patient portal” OR “personal health record” OR “electronic personal health record”. Final inclusion criterion dictated that studies report on the patient experience and/or ways that patients may be supported to make competent health care decisions and act on those decisions using patient portal functionality.

Results

We found 120 studies that met the inclusion criteria. Based on the research questions, explicit and implicit aims of the studies, and related measures addressed, the studies were grouped into five major topics (patient adoption, provider endorsement, health literacy, usability, and utility). We discuss the findings and conclusions of studies that address the five topical areas.

Conclusions

Current research has demonstrated that patients’ interest and ability to use patient portals is strongly influenced by personal factors such age, ethnicity, education level, health literacy, health status, and role as a caregiver. Health care delivery factors, mainly provider endorsement and patient portal usability also contribute to patient’s ability to engage through and with the patient portal. Future directions of research should focus on identifying specific populations and contextual considerations that would benefit most from a greater degree of patient engagement through a patient portal. Ultimately, adoption by patients and endorsement by providers will come when existing patient portal features align with patients’ and providers’ information needs and functionality.     

Use of an Electronic Patient Portal Among the Chronically Ill: An Observational Study

BackgroundElectronic patient portals may enhance effective interaction between the patient and the health care provider. To grasp the full potential of patient portals, health care providers need more knowledge on which patient groups prefer electronic services and how patients should be served through this channel.ObjectiveThe objective of this study was to assess how chronically ill patients’ state of health, comorbidities, and previous care are associated with their adoption and use of a patient portal.MethodsA total of 222 chronically ill patients, who were offered access to a patient portal with their health records and secure messaging with care professionals, were included in the study. Differences in the characteristics of non-users, viewers, and interactive users of the patient portal were analyzed before access to the portal. Patients’ age, gender, diagnoses, levels of the relevant physiological measurements, health care contacts, and received physiological measurements were collected from the care provider’s electronic health record. In addition, patient-reported health and patient activation were assessed by a survey.ResultsDespite the broad range of measures used to indicate the patients’ state of health, the portal user groups differed only in their recorded diagnosis for hypertension, which was most common in the non-user group. However, there were significant differences in the amount of care received during the year before access to the portal. The non-user group had more nurse visits and more measurements of relevant physiological outcomes than viewers and interactive users. They also had fewer referrals to specialized care during the year before access to the portal than the two other groups. The viewers and the interactive users differed from each other significantly in the number of nurse calls received, the interactive users having more calls than the viewers. No significant differences in age, gender, or patient activation were detected between the user groups.ConclusionsPrevious care received by the patient is an important predictor for the use of a patient portal. In a group of patients with a similar disease burden, demand for different types of health services and preferences related to the service channel seem to contribute to the choice to use the patient portal. Further research on patient portal functionalities and their potential to meet patient needs by complementing or substituting for traditional health care services is suggested.     

A Patient Portal With Electronic Messaging: Controlled Before-and-After Study

Background

Patients’ access to their medical records, along with electronic messaging, offers an efficient means of information transition between patients and their caregivers. Easier access to information and interaction with health care professionals may reduce use of other services while increasing patients’ activation in the management of their own health. Patient portals may therefore have a favorable impact on the cost-effectiveness of care.

Objective

The aim was to assess the benefits and risks of providing electronic messaging services to patients with chronic conditions. Using cost-effectiveness analysis, the outcomes and costs of providing access to an electronic patient portal were evaluated in a real-life treatment process in primary care.

Methods

A total of 876 chronically ill patients from public primary care were allocated to either an intervention group receiving immediate access to a patient portal that included their medical records, care plan, and secure messaging with a care team, or to a control group receiving standard care. Incremental direct heath care costs, health status based on the Short-Form Health Survey, version 2 (SF-36v2), and patient activation based on the short form of the Patient Activation Measure (PAM13) were compared to standard care in a 6-month follow-up. Incremental cost-effectiveness ratios were calculated using a sample of 80 patients in the intervention group and 57 patients in the control group; thus, a total of 137 patients were included in the final analysis. Propensity-score matching was used to assess the sensitivity of the results to the possible attrition bias.

Results

Patient activation improved more in the intervention group but the effect was not statistically significant. The effect on cost of care was ambiguous; costs decreased by an average of €91 in the unadjusted model, but increased by €48 in the adjusted model. Due to the controversial results on cost, the unadjusted analysis showed an 89% probability of cost-effectiveness with no willingness to pay for increased patient activation, whereas in the adjusted sample, the probability of the portal being more cost-effective than care as usual exceeded 50% probability at a willingness to pay €700 per clinically significant increase in patient activation score. There was no marked short-term impact on health status based on the SF-36v2 measure.

Conclusions

Offering the possibility to substitute health care visits with less costly contacts using self-management tools did not seem to compromise the health status or treatment of chronic care patients. Patient activation increased, and this could be achieved with moderate costs in a short-term experiment. In the long term, increased activation is proposed to lead to better health outcomes and eventually cut down resource use. Future studies should assess the long-term effects of patient portals on patients’ health status and cost of care.     

Improving Diabetes Management With a Patient Portal: Qualitative Study of a Diabetes Self-Management Portal

Background

Effective management and care of diabetes is crucial to reducing associated risks such as heart disease and kidney failure. With increasing access and use of the Internet, online chronic disease management is being explored as a means of providing patients with support and the necessary tools to monitor and manage their disease.

Objective

The objective of our study was to evaluate the experience of patients and providers using an online diabetes management portal for patients.

Methods

Participants were recruited from a large sample population of 887 for a follow-up questionnaire to be completed after 6 months of using the patient portal. Participants were presented with the option to participate in an additional interview and, if the participant agreed, a time and date was scheduled for the interview. A 5-item, open-ended questionnaire was used to capture providers'' opinions of the patient portal. Providers included general practitioners (GPs), nurses, nurse practitioners (NPs), dieticians, diabetes educators (DECs), and other clinical staff.

Results

A total of 854 patients were consented for the questionnaire. Seventeen (8 male, 9 female) patients agreed to participate in a telephone interview. Sixty-four health care providers completed the five open-ended questions; however, an average of 48.2 responses were recorded per question. Four major themes were identified and will be discussed in this paper. These themes have been classified as: facilitators of disease management, barriers to portal use, patient-provider communication and relationship, and recommendations for portal improvements.

Conclusions

This qualitative study shows that online chronic disease management portals increase patient access to information and engagement in their health care, but improvements in the portal itself may improve usability and reduce attrition. Furthermore, this study identifies a grey area that exists in the roles that GPs and AHPs should play in the facilitation of online disease management.     

Patient and Provider Attitudes Toward the Use of Patient Portals for the Management of Chronic Disease: A Systematic Review

Background

Patient portals provide patients with the tools to better manage and understand their health status. However, widespread adoption of patient portals faces resistance from patients and providers for a number of reasons, and there is limited evidence evaluating the characteristics of patient portals that received positive remarks from patients and providers.

Objective

The objectives of this systematic review are to identify the shared characteristics of portals that receive favorable responses from patients and providers and to identify the elements that patients and providers believe need improvement.

Methods

The authors conducted a systematic search of the CINAHL and PubMed databases to gather data about the use of patient portals in the management of chronic disease. Two reviewers analyzed the articles collected in the search process in order remove irrelevant articles. The authors selected 27 articles to use in the literature review.

Results

Results of this systematic review conclude that patient portals show significant improvements in patient self-management of chronic disease and improve the quality of care provided by providers. The most prevalent positive attribute was patient-provider communication, which appeared in 10 of 27 articles (37%). This was noted by both patients and providers. The most prevalent negative perceptions are security (concerns) and user-friendliness, both of which occurred in 11 of 27 articles (41%). The user-friendliness quality was a concern for patients and providers who are not familiar with advanced technology and therefore find it difficult to navigate the patient portal. The high cost of installation and maintenance of a portal system, not surprisingly, deters some providers from implementing such technology into their practice, but this was only mentioned in 3 of the 27 articles (11%). It is possible that the incentives for meaningful use assuage the barrier of cost.

Conclusions

This systematic review revealed mixed attitudes from patients and their providers regarding the use of patient portals to manage their chronic disease. The authors suggest that a standard patient portal design providing patients with the resources to understand and manage their chronic conditions will promote the adoption of patient portals in health care organizations.     

Electronic Health Record Patient Portal Adoption by Health Care Consumers: An Acceptance Model and Survey

BackgroundThe future of health care delivery is becoming more citizen centered, as today’s user is more active, better informed, and more demanding. Worldwide governments are promoting online health services, such as electronic health record (EHR) patient portals and, as a result, the deployment and use of these services. Overall, this makes the adoption of patient-accessible EHR portals an important field to study and understand.ObjectiveThe aim of this study is to understand the factors that drive individuals to adopt EHR portals.MethodsWe applied a new adoption model using, as a starting point, Ventkatesh''s Unified Theory of Acceptance and Use of Technology in a consumer context (UTAUT2) by integrating a new construct specific to health care, a new moderator, and new relationships. To test the research model, we used the partial least squares (PLS) causal modelling approach. An online questionnaire was administrated. We collected 360 valid responses.ResultsThe statistically significant drivers of behavioral intention are performance expectancy (beta=.200; t=3.619), effort expectancy (beta=.185; t=2.907), habit (beta=.388; t=7.320), and self-perception (beta=.098; t=2.285). The predictors of use behavior are habit (beta=0.206; t=2.752) and behavioral intention (beta=0.258; t=4.036). The model explained 49.7% of the variance in behavioral intention and 26.8% of the variance in use behavior.ConclusionsOur research helps to understand the desired technology characteristics of EHR portals. By testing an information technology acceptance model, we are able to determine what is more valued by patients when it comes to deciding whether to adopt EHR portals or not. The inclusion of specific constructs and relationships related to the health care consumer area also had a significant impact on understanding the adoption of EHR portals.     

The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers

Background

A critical problem for patients with chronic conditions who see multiple health care providers is incomplete or inaccurate information, which can contribute to lack of care coordination, low quality of care, and medical errors.

Objective

As part of a larger project on applications of consumer health information technology (HIT) and barriers to its use, we conducted a semistructured interview study with patients with multiple chronic conditions (MCC) with the objective of exploring their role in managing their personal health information.

Methods

Semistructured interviews were conducted with patients and providers. Patients were eligible if they had multiple chronic conditions and were in regular care with one of two medical organizations in New York City; health care providers were eligible if they had experience caring for patients with multiple chronic conditions. Analysis was conducted from a grounded theory perspective, and recruitment was concluded when saturation was achieved.

Results

A total of 22 patients and 7 providers were interviewed; patients had an average of 3.5 (SD 1.5) chronic conditions and reported having regular relationships with an average of 5 providers. Four major themes arose: (1) Responsibility for managing medical information: some patients perceived information management and sharing as the responsibility of health care providers; others—particularly those who had had bad experiences in the past—took primary responsibility for information sharing; (2) What information should be shared: although privacy concerns did influence some patients’ perceptions of sharing of medical data, decisions about what to share were also heavily influenced by their understanding of health and disease and by the degree to which they understood the health care system; (3) Methods and tools varied: those patients who did take an active role in managing their records used a variety of electronic tools, paper tools, and memory; and (4) Information management as invisible work: managing transfers of medical information to solve problems was a tremendous amount of work that was largely unrecognized by the medical establishment.

Conclusions

We conclude that personal health information management should be recognized as an additional burden that MCC places upon patients. Effective structural solutions for information sharing, whether institutional ones such as care management or technological ones such as electronic health information exchange, are likely not only to improve the quality of information shared but reduce the burden on patients already weighed down by MCC.     

Patients Know Best: Qualitative Study on How Families Use Patient-Controlled Personal Health Records

Background

Self-management technologies, such as patient-controlled electronic health records (PCEHRs), have the potential to help people manage and cope with disease.

Objective

This study set out to investigate patient families’ lived experiences of working with a PCEHR.

Methods

We conducted a semistructured qualitative field study with patient families and clinicians at a children’s hospital in the UK that uses a PCEHR (Patients Know Best). All families were managing the health of a child with a serious chronic condition, who was typically under the care of multiple clinicians. As data gathering and analysis progressed, it became clear that while much of the literature assumes that patients are willing and waiting to take more responsibility for and control over their health management (eg, with PCEHRs), only a minority of participants in our study responded in this way. Their experiences with the PCEHR were diverse and strongly shaped by their coping styles. Theory on coping identifies a continuum of coping styles, from approach to avoidance oriented, and proposes that patients’ information needs depend on their style.

Results

We identified 3 groups of patient families and an outlier, distinguished by their coping style and their PCEHR use. We refer to the outlier as controlling (approach oriented, highly motivated to use PCEHR), and the 3 groups as collaborating (approach oriented, motivated to use PCEHR), cooperating (avoidance oriented, less motivated to use PCEHR), and avoiding (very avoidance oriented, not motivated to use PCEHR).

Conclusions

The PCEHR met the needs of controller and collaborators better than the needs of cooperators and avoiders. We draw on the Self-Determination Theory to propose ways in which a PCEHR design might better meet the needs of avoidance-oriented users. Further, we highlight the need for families to also relinquish control at times, and propose ways in which PCEHR design might support a better distribution of control, based on effective training, ease of use, comprehensibility of data security mechanisms, timely information provision (recognizing people’s different needs), personalization of use, and easy engagement with clinicians through the PCEHR.     

Barriers and Facilitators to Online Portal Use Among Patients and Caregivers in a Safety Net Health Care System: A Qualitative Study

Background

Patient portals have the potential to support self-management for chronic diseases and improve health outcomes. With the rapid rise in adoption of patient portals spurred by meaningful use incentives among safety net health systems (a health system or hospital providing a significant level of care to low-income, uninsured, and vulnerable populations), it is important to understand the readiness and willingness of patients and caregivers in safety net settings to access their personal health records online.

Objective

To explore patient and caregiver perspectives on online patient portal use before its implementation at San Francisco General Hospital, a safety net hospital.

Methods

We conducted 16 in-depth interviews with chronic disease patients and caregivers who expressed interest in using the Internet to manage their health. Discussions focused on health care experiences, technology use, and interest in using an online portal to manage health tasks. We used open coding to categorize all the barriers and facilitators to portal use, followed by a second round of coding that compared the categories to previously published findings. In secondary analyses, we also examined specific barriers among 2 subgroups: those with limited health literacy and caregivers.

Results

We interviewed 11 patients and 5 caregivers. Patients were predominantly male (82%, 9/11) and African American (45%, 5/11). All patients had been diagnosed with diabetes and the majority had limited health literacy (73%, 8/11). The majority of caregivers were female (80%, 4/5), African American (60%, 3/5), caregivers of individuals with diabetes (60%, 3/5), and had adequate health literacy (60%, 3/5). A total of 88% (14/16) of participants reported interest in using the portal after viewing a prototype. Major perceived barriers included security concerns, lack of technical skills/interest, and preference for in-person communication. Facilitators to portal use included convenience, health monitoring, and improvements in patient-provider communication. Participants with limited health literacy discussed more fundamental barriers to portal use, including challenges with reading and typing, personal experience with online security breaches/viruses, and distrust of potential security measures. Caregivers expressed high interest in portal use to support their roles in interpreting health information, advocating for quality care, and managing health behaviors and medical care.

Conclusions

Despite concerns about security, difficulty understanding medical information, and satisfaction with current communication processes, respondents generally expressed enthusiasm about portal use. Our findings suggest a strong need for training and support to assist vulnerable patients with portal registration and use, particularly those with limited health literacy. Efforts to encourage portal use among vulnerable patients should directly address health literacy and security/privacy issues and support access for caregivers.     

Monitoring Reasons for Encounter via an Electronic Patient Record System: the Case of a Rural Practice Initiative

The objective of this brief communication was to tabulate common reasons for encounter in a Greek rural general practice, as result of a recently adopted electronic patient record (EPR) application. Twenty encounter reasons accounted for 3,797 visits (61% of all patient encounters), whereas 565 other reasons accounted for the remaining 2,429 visits (39%). Number one reason for encounter was health maintenance or disease prevention seeking services, including screening examinations for malignancies, immunization and provision of medical opinion reports. Hypertension, lipid disorder and ischemic heart disease without angina were among the most common reasons for seeking care. A strengths/weaknesses/opportunities/threats (SWOT) analysis on the key role of an EPR system in collecting data from rural and remote primary health care settings is also presented.     

Telemonitoring and Mobile Phone-Based Health Coaching Among Finnish Diabetic and Heart Disease Patients: Randomized Controlled Trial

Background

There is a strong will and need to find alternative models of health care delivery driven by the ever-increasing burden of chronic diseases.

Objective

The purpose of this 1-year trial was to study whether a structured mobile phone-based health coaching program, which was supported by a remote monitoring system, could be used to improve the health-related quality of life (HRQL) and/or the clinical measures of type 2 diabetes and heart disease patients.

Methods

A randomized controlled trial was conducted among type 2 diabetes patients and heart disease patients of the South Karelia Social and Health Care District. Patients were recruited by sending invitations to randomly selected patients using the electronic health records system. Health coaches called patients every 4 to 6 weeks and patients were encouraged to self-monitor their weight, blood pressure, blood glucose (diabetics), and steps (heart disease patients) once per week. The primary outcome was HRQL measured by the Short Form (36) Health Survey (SF-36) and glycosylated hemoglobin (HbA1c) among diabetic patients. The clinical measures assessed were blood pressure, weight, waist circumference, and lipid levels.

Results

A total of 267 heart patients and 250 diabetes patients started in the trial, of which 246 and 225 patients concluded the end-point assessments, respectively. Withdrawal from the study was associated with the patients’ unfamiliarity with mobile phones—of the 41 dropouts, 85% (11/13) of the heart disease patients and 88% (14/16) of the diabetes patients were familiar with mobile phones, whereas the corresponding percentages were 97.1% (231/238) and 98.6% (208/211), respectively, among the rest of the patients (P=.02 and P=.004). Withdrawal was also associated with heart disease patients’ comorbidities—40% (8/20) of the dropouts had at least one comorbidity, whereas the corresponding percentage was 18.9% (47/249) among the rest of the patients (P=.02). The intervention showed no statistically significant benefits over the current practice with regard to health-related quality of life—heart disease patients: beta=0.730 (P=.36) for the physical component score and beta=-0.608 (P=.62) for the mental component score; diabetes patients: beta=0.875 (P=.85) for the physical component score and beta=-0.770 (P=.52) for the mental component score. There was a significant difference in waist circumference in the type 2 diabetes group (beta=-1.711, P=.01). There were no differences in any other outcome variables.

Conclusions

A health coaching program supported with telemonitoring did not improve heart disease patients'' or diabetes patients'' quality of life or their clinical condition. There were indications that the intervention had a differential effect on heart patients and diabetes patients. Diabetes patients may be more prone to benefit from this kind of intervention. This should not be neglected when developing new ways for self-management of chronic diseases.

Trial Registration

ClinicalTrials.gov {"type":"clinical-trial","attrs":{"text":"NCT01310491","term_id":"NCT01310491"}}NCT01310491; http://clinicaltrials.gov/ct2/show/{"type":"clinical-trial","attrs":{"text":"NCT01310491","term_id":"NCT01310491"}}NCT01310491 (Archived by WebCite at http://www.webcitation.org/6Z8l5FwAM).     

The Effect of Patient Portals on Quality Outcomes and Its Implications to Meaningful Use: A Systematic Review

Background

The Health Information Technology for Economic and Clinical Health (HITECH) Act imposes pressure on health care organizations to qualify for “Meaningful Use”. It is assumed that portals should increase patient participation in medical decisions, but whether or not the use of portals improves outcomes remains to be seen.

Objective

The purpose of this systemic review is to outline and summarize study results on the effect of patient portals on quality, or chronic-condition outcomes as defined by the Agency for Healthcare Research and Quality, and its implications to Meaningful Use since the beginning of 2011. This review updates and builds on the work by Ammenwerth, Schnell-Inderst, and Hoerbst.

Methods

We performed a systematic literature search in PubMed, CINAHL, and Google Scholar. We identified any data-driven study, quantitative or qualitative, that examined a relationship between patient portals, or patient portal features, and outcomes. We also wanted to relate the findings back to Meaningful Use criteria. Over 4000 articles were screened, and 27 were analyzed and summarized for this systematic review.

Results

We identified 26 studies and 1 review, and we summarized their findings and applicability to our research question. Very few studies associated use of the patient portal, or its features, to improved outcomes; 37% (10/27) of papers reported improvements in medication adherence, disease awareness, self-management of disease, a decrease of office visits, an increase in preventative medicine, and an increase in extended office visits, at the patient’s request for additional information. The results also show an increase in quality in terms of patient satisfaction and customer retention, but there are weak results on medical outcomes.

Conclusions

The results of this review demonstrate that more health care organizations today offer features of a patient portal than in the review published in 2011. Articles reviewed rarely analyzed a full patient portal but instead analyzed features of a portal such as secure messaging, as well as disease management and monitoring. The ability of patients to be able to view their health information electronically meets the intent of Meaningful Use, Stage 2 requirements, but the ability to transmit to a third party was not found in the review.     

Online Access to Doctors' Notes: Patient Concerns About Privacy

Background

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.

Objective

To identify patients’ attitudes toward privacy when given electronic access to their medical records, including visit notes.

Methods

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.

Results

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.

Conclusions

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.