Sociotechnical challenges to developing technologies for patient access to health information exchange data

Background

Providing patients with access to their medical data is widely expected to help educate and empower them to manage their own health. Health information exchange (HIE) infrastructures could potentially help patients access records across multiple healthcare providers. We studied three HIE organizations as they developed portals to give consumers access to HIE data previously exchanged only among healthcare organizations.

Objective

To follow the development of new consumer portal technologies, and to identify barriers and facilitators to patient access to HIE data.

Methods

Semistructured interviews of 15 key informants over a 2-year period spanning the development and early implementation of three new projects, coded according to a sociotechnical framework.

Results

As the organizations tried to develop functionality that fully served the needs of both providers and patients, plans were altered by technical barriers (primarily related to data standardization) and cultural and legal issues surrounding data access. Organizational changes also played an important role in altering project plans. In all three cases, patient access to data was significantly scaled back from initial plans.

Conclusions

This prospective study revealed how sociotechnical factors previously identified as important in health information technology success and failure helped to shape the evolution of three novel consumer informatics projects. Barriers to providing patients with seamless access to their HIE data were multifactorial. Remedies will have to address technical, organizational, cultural, and other factors.     

Patient-controlled sharing of medical imaging data across unaffiliated healthcare organizations

Background

Current image sharing is carried out by manual transportation of CDs by patients or organization-coordinated sharing networks. The former places a significant burden on patients and providers. The latter faces challenges to patient privacy.

Objective

To allow healthcare providers efficient access to medical imaging data acquired at other unaffiliated healthcare facilities while ensuring strong protection of patient privacy and minimizing burden on patients, providers, and the information technology infrastructure.

Methods

An image sharing framework is described that involves patients as an integral part of, and with full control of, the image sharing process. Central to this framework is the Patient Controlled Access-key REgistry (PCARE) which manages the access keys issued by image source facilities. When digitally signed by patients, the access keys are used by any requesting facility to retrieve the associated imaging data from the source facility. A centralized patient portal, called a PCARE patient control portal, allows patients to manage all the access keys in PCARE.

Results

A prototype of the PCARE framework has been developed by extending open-source technology. The results for feasibility, performance, and user assessments are encouraging and demonstrate the benefits of patient-controlled image sharing.

Discussion

The PCARE framework is effective in many important clinical cases of image sharing and can be used to integrate organization-coordinated sharing networks. The same framework can also be used to realize a longitudinal virtual electronic health record.

Conclusion

The PCARE framework allows prior imaging data to be shared among unaffiliated healthcare facilities while protecting patient privacy with minimal burden on patients, providers, and infrastructure. A prototype has been implemented to demonstrate the feasibility and benefits of this approach.     

Alternatives to Project-specific Consent for Access to Personal Information for Health Research: What Is the Opinion of the Canadian Public?

Objectives

This study sought to determine public opinion on alternatives to project-specific consent for use of their personal information for health research.

Design

The authors conducted a fixed-response random-digit dialed telephone survey of 1,230 adults across Canada.

Measurements

We measured attitudes toward privacy and health research; trust in different institutions to keep information confidential; and consent choice for research use of one’s own health information involving medical record review, automated abstraction of information from the electronic medical record, and linking education or income with health data.

Results

Support was strong for both health research and privacy protection. Studying communicable diseases and quality of health care had greatest support (85% to 89%). Trust was highest for data institutes, university researchers, hospitals, and disease foundations (78% to 80%). Four percent of respondents thought information from their paper medical record should not be used at all for research, 32% thought permission should be obtained for each use, 29% supported broad consent, 24% supported notification and opt out, and 11% felt no need for notification or consent. Opinions were more polarized for automated abstraction of data from the electronic medical record. Respondents were more willing to link education with health data than income.

Conclusions

Most of the public supported alternatives to study-specific consent, but few supported use without any notification or consent. Consent choices for research use of one’s health information should be documented in the medical record. The challenge remains how best to elicit those choices and ensure that they are up-to-date.     

Orthodox versus unorthodox care: A qualitative study on where rural women seek healthcare during pregnancy and childbirth in Southwest,Nigeria

Introduction

Utilization of orthodox health facilities for maternal health services is determined by factors operating at the individual, household, community and state level. The prevalence of small family norm is one of the identified variables operating within the community which influences the decision of where to access care (orthodox/traditional). The objective of the study was to determine the use of orthodox versus unorthodox maternity healthcare and determinants among rural women in southwest Nigeria.

Methods

A qualitative study was done and involved three focus group discussions. A semi-structured interview guide was used to collect information from women of reproductive age group within a rural Local Government Area in Lagos state.

Results

Most of the women access some form of healthcare during pregnancy, orthodox, unorthodox or both. Those who patronize both services concurrently do so to benefit from the two as each has some unique features such as herbal concoctions for traditional, ultrasound and immunization of babies for orthodox. Traditional belief exerts a strong influence on decision of where to access maternal healthcare services. Actual place of delivery is determined by individual and household factors including financial resources.

Conclusion

Rural women utilize one or both orthodox and unorthodox maternal health services for different reasons. Ward Development Committees should be strengthened so as to reach the communities, educate and convince women to dispel myths which limit their use of orthodox care. Training and monitoring of Traditional Birth Attendants (TBAs) are vital to eliminate harmful practices. We also recommend improved financial access to orthodox healthcare.     

Use of the internet and an online personal health record system by US veterans: comparison of Veterans Affairs mental health service users and other veterans nationally

Objective

The Department of Veterans Affairs (VA) operates one of the largest nationwide healthcare systems and is increasing use of internet technology, including development of an online personal health record system called My HealtheVet. This study examined internet use among veterans in general and particularly use of online health information among VA patients and specifically mental health service users.

Methods

A nationally representative sample of 7215 veterans from the 2010 National Survey of Veterans was used. Logistic regression was employed to examine background characteristics associated with internet use and My HealtheVet.

Results

71% of veterans reported using the internet and about a fifth reported using My HealtheVet. Veterans who were younger, more educated, white, married, and had higher incomes were more likely to use the internet. There was no association between background characteristics and use of My HealtheVet. Mental health service users were no less likely to use the internet or My HealtheVet than other veterans.

Discussion

Most veterans are willing to access VA information online, although many VA service users do not use My HealtheVet, suggesting more education and research is needed to reduce barriers to its use.

Conclusion

Although adoption of My HealtheVet has been slow, the majority of veterans, including mental health service users, use the internet and indicate a willingness to receive and interact with health information online.     

Benchmarking health IT among OECD countries: better data for better policy

Objective

To develop benchmark measures of health information and communication technology (ICT) use to facilitate cross-country comparisons and learning.

Materials and methods

The effort is led by the Organisation for Economic Co-operation and Development (OECD). Approaches to definition and measurement within four ICT domains were compared across seven OECD countries in order to identify functionalities in each domain. These informed a set of functionality-based benchmark measures, which were refined in collaboration with representatives from more than 20 OECD and non-OECD countries. We report on progress to date and remaining work to enable countries to begin to collect benchmark data.

Results

The four benchmarking domains include provider-centric electronic record, patient-centric electronic record, health information exchange, and tele-health. There was broad agreement on functionalities in the provider-centric electronic record domain (eg, entry of core patient data, decision support), and less agreement in the other three domains in which country representatives worked to select benchmark functionalities.

Discussion

Many countries are working to implement ICTs to improve healthcare system performance. Although many countries are looking to others as potential models, the lack of consistent terminology and approach has made cross-national comparisons and learning difficult.

Conclusions

As countries develop and implement strategies to increase the use of ICTs to promote health goals, there is a historic opportunity to enable cross-country learning. To facilitate this learning and reduce the chances that individual countries flounder, a common understanding of health ICT adoption and use is needed. The OECD-led benchmarking process is a crucial step towards achieving this.     

Blue Button use by patients to access and share health record information using the Department of Veterans Affairs’ online patient portal

Objective

The Blue Button feature of online patient portals promotes patient engagement by allowing patients to easily download their personal health information. This study examines the adoption and use of the Blue Button feature in the Department of Veterans Affairs’ (VA) personal health record portal, My HealtheVet.

Materials and methods

An online survey presented to a 4% random sample of My HealtheVet users between March and May 2012. Questions were designed to determine characteristics associated with Blue Button use, perceived value of use, and how Veterans with non-VA providers use the Blue Button to share information with their non-VA providers.

Results

Of the survey participants (N=18 398), 33% were current Blue Button users. The most highly endorsed benefit was that it helped patients understand their health history better because all the information was in one place (73%). Twenty-one percent of Blue Button users with a non-VA provider shared their VA health information, and 87% reported that the non-VA provider found the information somewhat or very helpful. Veterans’ self-rated computer ability was the strongest factor contributing to both Blue Button use and to sharing information with non-VA providers. When comparing Blue Button users and non-users, barriers to adoption were low awareness of the feature and difficulty using the Blue Button.

Conclusions

This study contributes to the understanding of early Blue Button adoption and use of this feature for patient-initiated sharing of health information. Educational efforts are needed to raise awareness of the Blue Button and to address usability issues that hinder adoption.     

Research and applications: Imaging informatics for consumer health: towards a radiology patient portal

Objective

With the increased routine use of advanced imaging in clinical diagnosis and treatment, it has become imperative to provide patients with a means to view and understand their imaging studies. We illustrate the feasibility of a patient portal that automatically structures and integrates radiology reports with corresponding imaging studies according to several information orientations tailored for the layperson.

Methods

The imaging patient portal is composed of an image processing module for the creation of a timeline that illustrates the progression of disease, a natural language processing module to extract salient concepts from radiology reports (73% accuracy, F₁ score of 0.67), and an interactive user interface navigable by an imaging findings list. The portal was developed as a Java-based web application and is demonstrated for patients with brain cancer.

Results and discussion

The system was exhibited at an international radiology conference to solicit feedback from a diverse group of healthcare professionals. There was wide support for educating patients about their imaging studies, and an appreciation for the informatics tools used to simplify images and reports for consumer interpretation. Primary concerns included the possibility of patients misunderstanding their results, as well as worries regarding accidental improper disclosure of medical information.

Conclusions

Radiologic imaging composes a significant amount of the evidence used to make diagnostic and treatment decisions, yet there are few tools for explaining this information to patients. The proposed radiology patient portal provides a framework for organizing radiologic results into several information orientations to support patient education.     

The impact of the electronic medical record on structure,process, and outcomes within primary care: a systematic review of the evidence

Background

The electronic medical record (EMR)/electronic health record (EHR) is becoming an integral component of many primary-care outpatient practices. Before implementing an EMR/EHR system, primary-care practices should have an understanding of the potential benefits and limitations.

Objective

The objective of this study was to systematically review the recent literature around the impact of the EMR/EHR within primary-care outpatient practices.

Materials and methods

Searches of Medline, EMBASE, CINAHL, ABI Inform, and Cochrane Library were conducted to identify articles published between January 1998 and January 2010. The gray literature and reference lists of included articles were also searched. 30 studies met inclusion criteria.

Results and discussion

The EMR/EHR appears to have structural and process benefits, but the impact on clinical outcomes is less clear. Using Donabedian''s framework, five articles focused on the impact on healthcare structure, 21 explored healthcare process issues, and four focused on health-related outcomes.     

Patient access to medical records and healthcare outcomes: a systematic review

Objectives

We conducted a systematic review to determine the effect of providing patients access to their medical records (electronic or paper-based) on healthcare quality, as defined by measures of safety, effectiveness, patient-centeredness, timeliness, efficiency, and equity.

Methods

Articles indexed in PubMed from January 1970 to January 2012 were reviewed. Twenty-seven English-language controlled studies were included. Outcomes were categorized as measures of effectiveness (n=19), patient-centeredness (n=16), and efficiency (n=2); no study addressed safety, timeliness, or equity.

Results

Outcomes were equivocal with respect to several aspects of effectiveness and patient-centeredness. Efficiency outcomes in terms of frequency of in-person and telephone encounters were mixed. Access to health records appeared to enhance patients’ perceptions of control and reduced or had no effect on patient anxiety.

Conclusion

Although few positive findings generally favored patient access, the literature is unclear on whether providing patients access to their medical records improves quality.     

Improving personal health records for patient-centered care

Objective

To assess the patient-centeredness of personal health records (PHR) and offer recommendations for best practice guidelines.

Design

Semi-structured interviews were conducted in seven large early PHR adopter organizations in 2007. Organizations were purposively selected to represent a variety of US settings, including medium and large hospitals, ambulatory care facilities, insurers and health plans, government departments, and commercial sectors.

Measurements

Patient-centeredness was assessed against a framework of care that includes: (1) respect for patient values, preferences, and expressed needs; (2) information and education; (3) access to care; (4) emotional support to relieve fear and anxiety; (5) involvement of family and friends; (6) continuity and secure transition between healthcare providers; (7) physical comfort; (8) coordination of care. Within this framework we used evidence for patient preferences (where it exists) to compare existing PHR policies, and propose a best practice model.

Results

Most organizations enable many patient-centered functions such as data access for proxies and minors. No organization allows patient views of clinical progress notes, and turnaround times for PHR reporting of normal laboratory results can be up to 7 days.

Conclusion

Findings suggest patient-centeredness for personal health records can be improved, and recommendations are made for best practice guidelines.     

From web search to healthcare utilization: privacy-sensitive studies from mobile data

Objective

We explore relationships between health information seeking activities and engagement with healthcare professionals via a privacy-sensitive analysis of geo-tagged data from mobile devices.

Materials and methods

We analyze logs of mobile interaction data stripped of individually identifiable information and location data. The data analyzed consist of time-stamped search queries and distances to medical care centers. We examine search activity that precedes the observation of salient evidence of healthcare utilization (EHU) (ie, data suggesting that the searcher is using healthcare resources), in our case taken as queries occurring at or near medical facilities.

Results

We show that the time between symptom searches and observation of salient evidence of seeking healthcare utilization depends on the acuity of symptoms. We construct statistical models that make predictions of forthcoming EHU based on observations about the current search session, prior medical search activities, and prior EHU. The predictive accuracy of the models varies (65%–90%) depending on the features used and the timeframe of the analysis, which we explore via a sensitivity analysis.

Discussion

We provide a privacy-sensitive analysis that can be used to generate insights about the pursuit of health information and healthcare. The findings demonstrate how large-scale studies of mobile devices can provide insights on how concerns about symptomatology lead to the pursuit of professional care.

Conclusion

We present new methods for the analysis of mobile logs and describe a study that provides evidence about how people transition from mobile searches on symptoms and diseases to the pursuit of healthcare in the world.     

Information seeking and social support in online health communities: impact on patients' perceived empathy

Objective

Many healthcare organizations (HCOs) including Kaiser Permanente, Johns Hopkins, Cleveland Medical Center, and MD Anderson Cancer Center, provide access to online health communities as part of their overall patient support services. The key objective in establishing and running these online health communities is to offer empathic support to patients. Patients'' perceived empathy is considered to be critical in patient recovery, specifically, by enhancing patient''s compliance with treatment protocols and the pace of healing. Most online health communities are characterized by two main functions: informational support and social support. This study examines the relative impact of these two distinct functions—that is, as an information seeking forum and as a social support forum—on patients'' perceived empathy in online health communities.

Design

This study tests the impact of two variables that reflect the above functions of online health communities—information seeking effectiveness and perceived social support—on perceived empathy. The model also incorporates the potential moderating effect of homophily on these relationships.

Measurements

A web-based survey was used to collect data from members of the online health communities provided by three major healthcare centers. A regression technique was used to analyze the data to test the hypotheses.

Results

The study finds that it is the information seeking effectiveness rather than the social support which affects patient''s perceived empathy in online health communities run by HCOs. The results indicate that HCOs that provide online health communities for their patients need to focus more on developing tools that will make information seeking more effective and efficient.     

Behavioral health providers' beliefs about health information exchange: a statewide survey

Objective

To assess behavioral health providers'' beliefs about the benefits and barriers of health information exchange (HIE).

Methods

Survey of a total of 2010 behavioral health providers in a Midwestern state (33% response rate), with questions based on previously reported open-ended beliefs elicitation interviews.

Results

Factor analysis resulted in four groupings: beliefs that HIE would improve care and communication, add cost and time burdens, present access and vulnerability concerns, and impact workflow and control (positively and negatively). A regression model including all four factors parsimoniously predicted attitudes toward HIE. Providers clustered into two groups based on their beliefs: a majority (67%) were positive about the impact of HIE, and the remainder (33%) were negative. There were some professional/demographic differences between the two clusters of providers.

Discussion

Most behavioral health providers are supportive of HIE; however, their adoption and use of it may continue to lag behind that of medical providers due to perceived cost and time burdens and concerns about access to and vulnerability of information.     

Explaining accesses to electronic medical records using diagnosis information

Objective

Ensuring the security and appropriate use of patient health information contained within electronic medical records systems is challenging. Observing these difficulties, we present an addition to the explanation-based auditing system (EBAS) that attempts to determine the clinical or operational reason why accesses occur to medical records based on patient diagnosis information. Accesses that can be explained with a reason are filtered so that the compliance officer has fewer suspicious accesses to review manually.

Methods

Our hypothesis is that specific hospital employees are responsible for treating a given diagnosis. For example, Dr Carl accessed Alice''s medical record because Hem/Onc employees are responsible for chemotherapy patients. We present metrics to determine which employees are responsible for a diagnosis and quantify their confidence. The auditing system attempts to use this responsibility information to determine the reason why an access occurred. We evaluate the auditing system''s classification quality using data from the University of Michigan Health System.

Results

The EBAS correctly determines which departments are responsible for a given diagnosis. Adding this responsibility information to the EBAS increases the number of first accesses explained by a factor of two over previous work and explains over 94% of all accesses with high precision.

Conclusions

The EBAS serves as a complementary security tool for personal health information. It filters a majority of accesses such that it is more feasible for a compliance officer to review the remaining suspicious accesses manually.     

“Not all my friends need to know”: a qualitative study of teenage patients,privacy, and social media

Background

The literature describes teenagers as active users of social media, who seem to care about privacy, but who also reveal a considerable amount of personal information. There have been no studies of how they manage personal health information on social media.

Objective

To understand how chronically ill teenage patients manage their privacy on social media sites.

Design

A qualitative study based on a content analysis of semistructured interviews with 20 hospital patients (12–18 years).

Results

Most teenage patients do not disclose their personal health information on social media, even though the study found a pervasive use of Facebook. Facebook is a place to be a “regular”, rather than a sick teenager. It is a place where teenage patients stay up-to-date about their social life—it is not seen as a place to discuss their diagnosis and treatment. The majority of teenage patients don''t use social media to come into contact with others with similar conditions and they don''t use the internet to find health information about their diagnosis.

Conclusions

Social media play an important role in the social life of teenage patients. They enable young patients to be “regular” teenagers. Teenage patients'' online privacy behavior is an expression of their need for self-definition and self-protection.     

Consumer Health Information Seeking as Hypothesis Testing

Objective

Despite the proliferation of consumer health sites, lay individuals often experience difficulty finding health information online. The present study attempts to understand users'' information seeking difficulties by drawing on a hypothesis testing explanatory framework. It also addresses the role of user competencies and their interaction with internet resources.

Design

Twenty participants were interviewed about their understanding of a hypothetical scenario about a family member suffering from stable angina and then searched MedlinePlus^® consumer health information portal for information on the problem presented in the scenario. Participants'' understanding of heart disease was analyzed via semantic analysis. Thematic coding was used to describe information seeking trajectories in terms of three key strategies: verification of the primary hypothesis, narrowing search within the general hypothesis area and bottom-up search.

Results

Compared to an expert model, participants'' understanding of heart disease involved different key concepts, which were also differently grouped and defined. This understanding provided the framework for search-guiding hypotheses and results interpretation. Incorrect or imprecise domain knowledge led individuals to search for information on irrelevant sites, often seeking out data to confirm their incorrect initial hypotheses. Online search skills enhanced search efficiency, but did not eliminate these difficulties.

Conclusions

Regardless of their web experience and general search skills, lay individuals may experience difficulty with health information searches. These difficulties may be related to formulating and evaluating hypotheses that are rooted in their domain knowledge. Informatics can provide support at the levels of health information portals, individual websites, and consumer education tools.     

Personal health records: a randomized trial of effects on elder medication safety

Purpose

To examine the impact of a personal health record (PHR) on medication-use safety among older adults.

Background

Online PHRs have potential as tools to manage health information. We know little about how to make PHRs accessible for older adults and what effects this will have.

Methods

A PHR was designed and pretested with older adults and tested in a 6-month randomized controlled trial. After completing mailed baseline questionnaires, eligible computer users aged 65 and over were randomized 3:1 to be given access to a PHR (n=802) or serve as a standard care control group (n=273). Follow-up questionnaires measured change from baseline medication use, medication reconciliation behaviors, and medication management problems.

Results

Older adults were interested in keeping track of their health and medication information. A majority (55.2%) logged into the PHR and used it, but only 16.1% used it frequently. At follow-up, those randomized to the PHR group were significantly less likely to use multiple non-steroidal anti-inflammatory drugs—the most common warning generated by the system (viewed by 23% of participants). Compared with low/non-users, high users reported significantly more changes in medication use and improved medication reconciliation behaviors, and recognized significantly more side effects, but there was no difference in use of inappropriate medications or adherence measures.

Conclusions

PHRs can engage older adults for better medication self-management; however, features that motivate continued use will be needed. Longer-term studies of continued users will be required to evaluate the impact of these changes in behavior on patient health outcomes.