“Nothing About Me Without Me”: An Interpretative Review of Patient Accessible Electronic Health Records

Background

Patient accessible electronic health records (PAEHRs) enable patients to access and manage personal clinical information that is made available to them by their health care providers (HCPs). It is thought that the shared management nature of medical record access improves patient outcomes and improves patient satisfaction. However, recent reviews have found that this is not the case. Furthermore, little research has focused on PAEHRs from the HCP viewpoint. HCPs include physicians, nurses, and service providers.

Objective

We provide a systematic review of reviews of the impact of giving patients record access from both a patient and HCP point of view. The review covers a broad range of outcome measures, including patient safety, patient satisfaction, privacy and security, self-efficacy, and health outcome.

Methods

A systematic search was conducted using Web of Science to identify review articles on the impact of PAEHRs. Our search was limited to English-language reviews published between January 2002 and November 2014. A total of 73 citations were retrieved from a series of Boolean search terms including “review*” with “patient access to records”. These reviews went through a novel scoring system analysis whereby we calculated how many positive outcomes were reported per every outcome measure investigated. This provided a way to quantify the impact of PAEHRs.

Results

Ten reviews covering chronic patients (eg, diabetes and hypertension) and primary care patients, as well as HCPs were found but eight were included for the analysis of outcome measures. We found mixed outcomes across both patient and HCP groups, with approximately half of the reviews showing positive changes with record access. Patients believe that record access increases their perception of control; however, outcome measures thought to create psychological concerns (such as patient anxiety as a result of seeing their medical record) are still unanswered. Nurses are more likely than physicians to gain time efficiencies by using a PAEHR system with the main concern from physicians being the security of the PAEHRs.

Conclusions

This review implements a novel scoring system, which shows there is a lack of rigorous empirical testing that separates the effect of record access from other existing disease management programs. Current research is too targeted within certain clinical groups’ needs, and although there are positive signs for the adoption of PAEHRs, there is currently insufficient evidence about the effect of PAEHRs on health outcomes for patients or HCPs.     

Do Cancer Patients Tweet? Examining the Twitter Use of Cancer Patients in Japan

Background

Twitter is an interactive, real-time media that could prove useful in health care. Tweets from cancer patients could offer insight into the needs of cancer patients.

Objective

The objective of this study was to understand cancer patients’ social media usage and gain insight into patient needs.

Methods

A search was conducted of every publicly available user profile on Twitter in Japan for references to the following: breast cancer, leukemia, colon cancer, rectal cancer, colorectal cancer, uterine cancer, cervical cancer, stomach cancer, lung cancer, and ovarian cancer. We then used an application programming interface and a data mining method to conduct a detailed analysis of the tweets from cancer patients.

Results

Twitter user profiles included references to breast cancer (n=313), leukemia (n=158), uterine or cervical cancer (n=134), lung cancer (n=87), colon cancer (n=64), and stomach cancer (n=44). A co-occurrence network is seen for all of these cancers, and each cancer has a unique network conformation. Keywords included words about diagnosis, symptoms, and treatments for almost all cancers. Words related to social activities were extracted for breast cancer. Words related to vaccination and support from public insurance were extracted for uterine or cervical cancer.

Conclusions

This study demonstrates that cancer patients share information about their underlying disease, including diagnosis, symptoms, and treatments, via Twitter. This information could prove useful to health care providers.     

eHealth,Participatory Medicine,and Ethical Care: A Focus Group Study of Patients’ and Health Care Providers’ Use of Health-Related Internet Information

Background

The rapid explosion in online digital health resources is seen as transformational, accelerating the shift from traditionally passive patients to patients as partners and altering the patient–health care professional (HCP) relationship. Patients with chronic conditions are increasingly engaged, enabled, and empowered to be partners in their care and encouraged to take responsibility for managing their conditions with HCP support.

Objective

In this paper, we focus on patients’ and HCPs’ use of health-related Internet information and how it influences the patient-HCP relationship. In particular, we examine the challenges emerging in medical encounters as roles and relationships shift and apply a conceptual framework of relational ethics to examine explicit and nuanced ethical dimensions emerging in patient-HCP interactions as both parties make increased use of health-related Internet information.

Methods

We purposively sampled patients and HCPs in British Columbia, Canada, to participate in focus groups. To be eligible, patients self-reported a diagnosis of arthritis and at least one other chronic health condition; HCPs reported a caseload with >25% of patients with arthritis and multimorbidity. We used a semistructured, but flexible, discussion guide. All discussions were audiotaped and transcribed verbatim. Elements of grounded theory guided our constant comparison thematic analytic approach. Analysis was iterative. A relational ethics conceptual lens was applied to the data.

Results

We recruited 32 participants (18 patients, 14 HCPs). They attended seven focus groups: four with patients and three with rehabilitation professionals and physicians. Predominant themes to emerge were how use of health-related Internet information fostered (1) changing roles, (2) patient-HCP partnerships, and (3) tensions and burdens for patients and HCPs.

Conclusions

Relational aspects such as mutual trust, uncertainty, and vulnerability are illuminated in patient-HCP interactions around health-related Internet information and the negotiated space of clinical encounters. New roles and associated responsibilities have key ethical dimensions that make clear the changes are fundamental and important to understand in ethical care. When faced with tensions and burdens around incorporating health-related Internet information as a resource in clinical encounters, participants described a particular ambivalence illustrating the fundamental changes being negotiated by both patients and HCPs.     

Sources of Traffic and Visitors’ Preferences Regarding Online Public Reports of Quality: Web Analytics and Online Survey Results

Background

In the context of the Affordable Care Act, there is extensive emphasis on making provider quality transparent and publicly available. Online public reports of quality exist, but little is known about how visitors find reports or about their purpose in visiting.

Objective

To address this gap, we gathered website analytics data from a national group of online public reports of hospital or physician quality and surveyed real-time visitors to those websites.

Methods

Websites were recruited from a national group of online public reports of hospital or physician quality. Analytics data were gathered from each website: number of unique visitors, method of arrival for each unique visitor, and search terms resulting in visits. Depending on the website, a survey invitation was launched for unique visitors on landing pages or on pages with quality information. Survey topics included type of respondent (eg, consumer, health care professional), purpose of visit, areas of interest, website experience, and demographics.

Results

There were 116,657 unique visitors to the 18 participating websites (1440 unique visitors/month per website), with most unique visitors arriving through search (63.95%, 74,606/116,657). Websites with a higher percent of traffic from search engines garnered more unique visitors (P=.001). The most common search terms were for individual hospitals (23.25%, 27,122/74,606) and website names (19.43%, 22,672/74,606); medical condition terms were uncommon (0.81%, 605/74,606). Survey view rate was 42.48% (49,560/116,657 invited) resulting in 1755 respondents (participation rate=3.6%). There were substantial proportions of consumer (48.43%, 850/1755) and health care professional respondents (31.39%, 551/1755). Across websites, proportions of consumer (21%-71%) and health care professional respondents (16%-48%) varied. Consumers were frequently interested in using the information to choose providers or assess the quality of their provider (52.7%, 225/427); the majority of those choosing a provider reported that they had used the information to do so (78%, 40/51). Health care professional (26.6%, 115/443) and consumer (20.8%, 92/442) respondents wanted cost information and consumers wanted patient narrative comments (31.5%, 139/442) on the public reports. Health care professional respondents rated the experience on the reports higher than consumers did (mean 7.2, SD 2.2 vs mean 6.2, SD 2.7; scale 0-10; P<.001).

Conclusions

Report sponsors interested in increasing the influence of their reports could consider using techniques to improve search engine traffic, providing cost information and patient comments, and improving the website experience for both consumers and health care professionals.     

Social Media: A Review and Tutorial of Applications in Medicine and Health Care

Background

Social media are dynamic and interactive computer-mediated communication tools that have high penetration rates in the general population in high-income and middle-income countries. However, in medicine and health care, a large number of stakeholders (eg, clinicians, administrators, professional colleges, academic institutions, ministries of health, among others) are unaware of social media’s relevance, potential applications in their day-to-day activities, as well as the inherent risks and how these may be attenuated and mitigated.

Objective

We conducted a narrative review with the aim to present case studies that illustrate how, where, and why social media are being used in the medical and health care sectors.

Methods

Using a critical-interpretivist framework, we used qualitative methods to synthesize the impact and illustrate, explain, and provide contextual knowledge of the applications and potential implementations of social media in medicine and health care. Both traditional (eg, peer-reviewed) and nontraditional (eg, policies, case studies, and social media content) sources were used, in addition to an environmental scan (using Google and Bing Web searches) of resources.

Results

We reviewed, evaluated, and synthesized 76 articles, 44 websites, and 11 policies/reports. Results and case studies are presented according to 10 different categories of social media: (1) blogs (eg, WordPress), (2) microblogs (eg, Twitter), (3) social networking sites (eg, Facebook), (4) professional networking sites (eg, LinkedIn, Sermo), (5) thematic networking sites (eg, 23andMe), (6) wikis (eg, Wikipedia), (7) mashups (eg, HealthMap), (8) collaborative filtering sites (eg, Digg), (9) media sharing sites (eg, YouTube, Slideshare), and others (eg, SecondLife). Four recommendations are provided and explained for stakeholders wishing to engage with social media while attenuating risk: (1) maintain professionalism at all times, (2) be authentic, have fun, and do not be afraid, (3) ask for help, and (4) focus, grab attention, and engage.

Conclusions

The role of social media in the medical and health care sectors is far reaching, and many questions in terms of governance, ethics, professionalism, privacy, confidentiality, and information quality remain unanswered. By following the guidelines presented, professionals have a starting point to engage with social media in a safe and ethical manner. Future research will be required to understand the synergies between social media and evidence-based practice, as well as develop institutional policies that benefit patients, clinicians, public health practitioners, and industry alike.     

National athletic trainers' association position statement: preventing sudden death in sports

Objective:

To present recommendations for the prevention and screening, recognition, and treatment of the most common conditions resulting in sudden death in organized sports.

Background:

Cardiac conditions, head injuries, neck injuries, exertional heat stroke, exertional sickling, asthma, and other factors (eg, lightning, diabetes) are the most common causes of death in athletes.

Recommendations:

These guidelines are intended to provide relevant information on preventing sudden death in sports and to give specific recommendations for certified athletic trainers and others participating in athletic health care.     

Two complementary personal medication management applications developed on a common platform: case report

Background

Adverse drug events are a major safety issue in ambulatory care. Improving medication self-management could reduce these adverse events. Researchers have developed medication applications for tethered personal health records (PHRs), but little has been reported about medication applications for interoperable PHRs.

Objective

Our objective was to develop two complementary personal health applications on a common PHR platform: one to assist children with complex health needs (MyMediHealth), and one to assist older adults in care transitions (Colorado Care Tablet).

Methods

The applications were developed using a user-centered design approach. The two applications shared a common PHR platform based on a service-oriented architecture. MyMediHealth employed Web and mobile phone user interfaces. Colorado Care Tablet employed a Web interface customized for a tablet PC.

Results

We created complementary medication management applications tailored to the needs of distinctly different user groups using common components. Challenges were addressed in multiple areas, including how to encode medication identities, how to incorporate knowledge bases for medication images and consumer health information, how to include supplementary dosing information, how to simplify user interfaces for older adults, and how to support mobile devices for children.

Conclusions

These prototypes demonstrate the utility of abstracting PHR data and services (the PHR platform) from applications that can be tailored to meet the needs of diverse patients. Based on the challenges we faced, we provide recommendations on the structure of publicly available knowledge resources and the use of mobile messaging systems for PHR applications.     

A Survey of Health-Related Activities on Second Life

Background

Increasingly, governments, health care agencies, companies, and private groups have chosen Second Life as part of their Web 2.0 communication strategies. Second Life offers unique design features for disseminating health information, training health professionals, and enabling patient education for both academic and commercial health behavior research.

Objectives

This study aimed to survey and categorize the range of health-related activities on Second Life; to examine the design attributes of the most innovative and popular sites; and to assess the potential utility of Second Life for the dissemination of health information and for health behavior change.

Methods

We used three separate search strategies to identify health-related sites on Second Life. The first used the application’s search engine, entering both generic and select illness-specific keywords, to seek out sites. The second identified sites through a comprehensive review of print, blog, and media sources discussing health activities on Second Life. We then visited each site and used a snowball method to identify other health sites until we reached saturation (no new health sites were identified). The content, user experience, and chief purpose of each site were tabulated as well as basic site information, including user traffic data and site size.

Results

We found a wide range of health-related activities on Second Life, and a diverse group of users, including organizations, groups, and individuals. For many users, Second Life activities are a part of their Web 2.0 communication strategy. The most common type of health-related site in our sample (n = 68) were those whose principle aim was patient education or to increase awareness about health issues. The second most common type of site were support sites, followed by training sites, and marketing sites. Finally, a few sites were purpose-built to conduct research in SL or to recruit participants for real-life research.

Conclusions

Studies show that behaviors from virtual worlds can translate to the real world. Our survey suggests that users are engaged in a range of health-related activities in Second Life which are potentially impacting real-life behaviors. Further research evaluating the impact of health-related activities on Second Life is warranted.     

Patient accessible electronic health records: exploring recommendations for successful implementation strategies

Background

Providing patients with access to their electronic health records offers great promise to improve patient health and satisfaction with their care, as well to improve professional and organizational approaches to health care. Although many benefits have been identified, there are many questions about best practices for the implementation of patient accessible Electronic Health Records (EHRs).

Objectives

To develop recommendations to assist health care organizations in providing patients with access to EHRs in a meaningful, responsible, and responsive manner.

Methods

A Patient Accessible Electronic Health Record (PAEHR) Workshop was held with nationally and internationally renowned experts to explore issues related to providing patient access to the EHR and managing institutional change.

Results

The PAEHR Workshop was attended by 45 participants who discussed recommendations for the implementation of patient accessible EHRs. Recommendations were discussed under four subject domains: (1) providing patient access to the EHR, (2) maintaining privacy and confidentiality related to the PAEHR, (3) patient education and navigation of the PAEHR, and (4) strategies for managing institutional change. The discussion focused on the need for national infrastructure, clear definitions for privacy, security and confidentiality, flexible, interoperable solutions, and patient and professional education. In addition, there was a strong call for research into all domains of patient accessible EHRs to ensure the adoption of evidence-based practices.

Conclusions

Patient access to personal health information is a fundamental issue for patient engagement and empowerment. Health care professionals and organizations should consider the potential benefits and risks of patient access when developing EHR strategies. Flexible, standardized, and interoperable solutions must be integrated with outcomes-based research to activate effectively patients as partners in their health care.     

The Impact of Electronic Patient Portals on Patient Care: A Systematic Review of Controlled Trials

Background

Modern information technology is changing and provides new challenges to health care. The emergence of the Internet and the electronic health record (EHR) has brought new opportunities for patients to play a more active role in his/her care. Although in many countries patients have the right to access their clinical information, access to clinical records electronically is not common. Patient portals consist of provider-tethered applications that allow patients to electronically access health information that are documented and managed by a health care institution. Although patient portals are already being implemented, it is still unclear in which ways these technologies can influence patient care.

Objective

To systematically review the available evidence on the impact of electronic patient portals on patient care.

Methods

A systematic search was conducted using PubMed and other sources to identify controlled experimental or quasi-experimental studies on the impact of patient portals that were published between 1990 and 2011. A total of 1,306 references from all the publication hits were screened, and 13 papers were retrieved for full text analysis.

Results

We identified 5 papers presenting 4 distinct studies. There were no statistically significant changes between intervention and control group in the 2 randomized controlled trials investigating the effect of patient portals on health outcomes. Significant changes in the patient portal group, compared to a control group, could be observed for the following parameters: quicker decrease in office visit rates and slower increase in telephone contacts; increase in number of messages sent; changes of the medication regimen; and better adherence to treatment.

Conclusions

The number of available controlled studies with regard to patient portals is low. Even when patient portals are often discussed as a way to empower patients and improve quality of care, there is insufficient evidence to support this assumption.     

What Is My Cancer Risk? How Internet-Based Cancer Risk Assessment Tools Communicate Individualized Risk Estimates to the Public: Content Analysis

Background

Internet-based cancer risk assessment tools have the potential to inform the public about cancer risk and promote risk-reducing behaviors. However, poorly communicated information on these websites may result in unintended adverse health outcomes.

Objective

This study examined whether: (1) Internet-based cancer risk assessment tools use risk communication formats that facilitate comprehension and reduce bias (as identified by the empirical literature); (2) the use of these formats varies by website affiliation; and (3) the websites provided information necessary to evaluate the quality of the risk estimate.

Methods

A content analysis of Internet-based cancer risk assessment tools was conducted. The terms calculate cancer risk, cancer risk calculator, estimate cancer risk, assess cancer risk, and cancer risk assessment were searched using three search engines. We identified 47 risk assessment tools and coded each according to standardized criteria. We calculated simple frequencies on all coding categories and performed crosstabulations but did not conduct formal statistical analysis due to small cell sizes.

Results

Use of risk communication formats that facilitate comprehension and reduce bias varied widely (eg, 30% of websites [14/47] provided absolute and comparative risk information but 83% [39/47] provided safety messages). Use of formats that facilitate comprehension varied by website affiliation and communication strategy (eg, only 8.3% [1/12] websites affiliated with the health care industry provided absolute and comparative risk information, but 83% [5/6] of websites affiliated with a governmental organization did so). Only 53% (25/47) of websites provided information about the statistical model or the peer-reviewed literature that was used to calculate the risk estimate.

Conclusion

Internet-based cancer risk assessment tools varied in their use of risk communication formats that facilitate comprehension and reduce bias. Formats that are difficult to understand may cause people to misperceive their cancer risk and consequently take inappropriate action.     

Promoting Health in Virtual Worlds: Lessons From Second Life

Background

Social media services can help empower people to take greater responsibility for their health. For example, virtual worlds are media-rich environments that have many technically advantageous characteristics that can be used for Health 2.0 purposes. Second Life has been used to build environments where people can obtain information and interact with other users for peer support and advice from health care professionals.

Objective

The intent of the study was to find out whether Second Life is a working and functional platform supporting the empowerment of people in health-related issues.

Methods

We conducted a review of the current health-related activity in Second Life, coupled with an extensive series of observations and interactions with the respective resources inside Second Life.

Results

A total of 24 operative health resources were found in Second Life, indicating that health-related activity is rather limited in Second Life, though at first glance it appears to contain very rich health-related content. The other main shortcomings of Second Life relate to a lack of activity, a low number of resource users, problems with Second Life’s search features, and the difficulty of finding trustworthy information.

Conclusions

For the average user, Second Life offers very little unique value compared to other online health resources.     

eHealth literacy: extending the digital divide to the realm of health information

Background

eHealth literacy is defined as the ability of people to use emerging information and communications technologies to improve or enable health and health care.

Objective

The goal of this study was to explore whether literacy disparities are diminished or enhanced in the search for health information on the Internet. The study focused on (1) traditional digital divide variables, such as sociodemographic characteristics, digital access, and digital literacy, (2) information search processes, and (3) the outcomes of Internet use for health information purposes.

Methods

We used a countrywide representative random-digital-dial telephone household survey of the Israeli adult population (18 years and older, N = 4286). We measured eHealth literacy; Internet access; digital literacy; sociodemographic factors; perceived health; presence of chronic diseases; as well as health information sources, content, search strategies, and evaluation criteria used by consumers.

Results

Respondents who were highly eHealth literate tended to be younger and more educated than their less eHealth-literate counterparts. They were also more active consumers of all types of information on the Internet, used more search strategies, and scrutinized information more carefully than did the less eHealth-literate respondents. Finally, respondents who were highly eHealth literate gained more positive outcomes from the information search in terms of cognitive, instrumental (self-management of health care needs, health behaviors, and better use of health insurance), and interpersonal (interacting with their physician) gains.

Conclusions

The present study documented differences between respondents high and low in eHealth literacy in terms of background attributes, information consumption, and outcomes of the information search. The association of eHealth literacy with background attributes indicates that the Internet reinforces existing social differences. The more comprehensive and sophisticated use of the Internet and the subsequent increased gains among the high eHealth literate create new inequalities in the domain of digital health information. There is a need to educate at-risk and needy groups (eg, chronically ill) and to design technology in a mode befitting more consumers.     

Fertility patients demonstrate an unmet need for the provision of psychological information: A cross sectional study

Objectives

To examine the provision of information by health care providers (HCPs) to fertility patients about accessing psychological resources.

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.     

The Wired Patient: Patterns of Electronic Patient Portal Use Among Patients With Cardiac Disease or Diabetes

Background

As providers develop an electronic health record–based infrastructure, patients are increasingly using Web portals to access their health information and participate electronically in the health care process. Little is known about how such portals are actually used.

Objective

In this paper, our goal was to describe the types and patterns of portal users in an integrated delivery system.

Methods

We analyzed 12 months of data from Web server log files on 2282 patients using a Web-based portal to their electronic health record (EHR). We obtained data for patients with cardiovascular disease and/or diabetes who had a Geisinger Clinic primary care provider and were registered “MyGeisinger” Web portal users. Hierarchical cluster analysis was applied to longitudinal data to profile users based on their frequency, intensity, and consistency of use. User types were characterized by basic demographic data from the EHR.

Results

We identified eight distinct portal user groups. The two largest groups (41.98%, 948/2258 and 24.84%, 561/2258) logged into the portal infrequently but had markedly different levels of engagement with their medical record. Other distinct groups were characterized by tracking biometric measures (10.54%, 238/2258), sending electronic messages to their provider (9.25%, 209/2258), preparing for an office visit (5.98%, 135/2258), and tracking laboratory results (4.16%, 94/2258).

Conclusions

There are naturally occurring groups of EHR Web portal users within a population of adult primary care patients with chronic conditions. More than half of the patient cohort exhibited distinct patterns of portal use linked to key features. These patterns of portal access and interaction provide insight into opportunities for electronic patient engagement strategies.