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.     

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.     

A personally controlled electronic health record for Australia

Objective

On July 1, 2012 Australia launched a personally controlled electronic health record (PCEHR) designed around the needs of consumers. Using a distributed model and leveraging key component national eHealth infrastructure, the PCEHR is designed to enable sharing of any health information about a patient with them and any other health practitioner involved in their care to whom the patient allows access. This paper discusses the consumer-facing part of the program.

Method

Design of the system was through stakeholder consultation and the development of detailed requirements, followed by clinical design assurance.

Results

Patients are able to access any posted information through a web-accessible ‘consumer portal.’ Within the portal they are able to assert access controls on all or part of their record. The portal includes areas for consumers to record their own personal information.

Discussion

The PCEHR has the potential to transform the ability of patients to actively engage in their own healthcare, and to enable the emerging partnership model of health and healthcare in medicine. The ability to access health information traditionally kept within the closed walls of institutions also raises challenges for the profession, both in the language clinicians choose and the ethical issues raised by the changed roles and responsibilities.

Conclusions

The PCEHR is aimed at connecting all participants and their interventions, and is intended to become a system-wide activity.     

Key principles for a national clinical decision support knowledge sharing framework: synthesis of insights from leading subject matter experts

Objective

To identify key principles for establishing a national clinical decision support (CDS) knowledge sharing framework.

Materials and methods

As part of an initiative by the US Office of the National Coordinator for Health IT (ONC) to establish a framework for national CDS knowledge sharing, key stakeholders were identified. Stakeholders'' viewpoints were obtained through surveys and in-depth interviews, and findings and relevant insights were summarized. Based on these insights, key principles were formulated for establishing a national CDS knowledge sharing framework.

Results

Nineteen key stakeholders were recruited, including six executives from electronic health record system vendors, seven executives from knowledge content producers, three executives from healthcare provider organizations, and three additional experts in clinical informatics. Based on these stakeholders'' insights, five key principles were identified for effectively sharing CDS knowledge nationally. These principles are (1) prioritize and support the creation and maintenance of a national CDS knowledge sharing framework; (2) facilitate the development of high-value content and tooling, preferably in an open-source manner; (3) accelerate the development or licensing of required, pragmatic standards; (4) acknowledge and address medicolegal liability concerns; and (5) establish a self-sustaining business model.

Discussion

Based on the principles identified, a roadmap for national CDS knowledge sharing was developed through the ONC''s Advancing CDS initiative.

Conclusion

The study findings may serve as a useful guide for ongoing activities by the ONC and others to establish a national framework for sharing CDS knowledge and improving clinical care.     

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.     

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.     

Validity of electronic health record-derived quality measurement for performance monitoring

Background

Since 2007, New York City''s primary care information project has assisted over 3000 providers to adopt and use a prevention-oriented electronic health record (EHR). Participating practices were taught to re-adjust their workflows to use the EHR built-in population health monitoring tools, including automated quality measures, patient registries and a clinical decision support system. Practices received a comprehensive suite of technical assistance, which included quality improvement, EHR customization and configuration, privacy and security training, and revenue cycle optimization. These services were aimed at helping providers understand how to use their EHR to track and improve the quality of care delivered to patients.

Materials and Methods

Retrospective electronic chart reviews of 4081 patient records across 57 practices were analyzed to determine the validity of EHR-derived quality measures and documented preventive services.

Results

Results from this study show that workflow and documentation habits have a profound impact on EHR-derived quality measures. Compared with the manual review of electronic charts, EHR-derived measures can undercount practice performance, with a disproportionately negative impact on the number of patients captured as receiving a clinical preventive service or meeting a recommended treatment goal.

Conclusion

This study provides a cautionary note in using EHR-derived measurement for public reporting of provider performance or use for payment.     

From health search to healthcare: explorations of intention and utilization via query logs and user surveys

Objective

To better understand the relationship between online health-seeking behaviors and in-world healthcare utilization (HU) by studies of online search and access activities before and after queries that pursue medical professionals and facilities.

Materials and methods

We analyzed data collected from logs of online searches gathered from consenting users of a browser toolbar from Microsoft (N=9740). We employed a complementary survey (N=489) to seek a deeper understanding of information-gathering, reflection, and action on the pursuit of professional healthcare.

Results

We provide insights about HU through the survey, breaking out its findings by different respondent marginalizations as appropriate. Observations made from search logs may be explained by trends observed in our survey responses, even though the user populations differ.

Discussion

The results provide insights about how users decide if and when to utilize healthcare resources, and how online health information seeking transitions to in-world HU. The findings from both the survey and the logs reveal behavioral patterns and suggest a strong relationship between search behavior and HU. Although the diversity of our survey respondents is limited and we cannot be certain that users visited medical facilities, we demonstrate that it may be possible to infer HU from long-term search behavior by the apparent influence that health concerns and professional advice have on search activity.

Conclusions

Our findings highlight different phases of online activities around queries pursuing professional healthcare facilities and services. We also show that it may be possible to infer HU from logs without tracking people''s physical location, based on the effect of HU on pre- and post-HU search behavior. This allows search providers and others to develop more robust models of interests and preferences by modeling utilization rather than simply the intention to utilize that is expressed in search queries.     

Harmonized patient-reported data elements in the electronic health record: supporting meaningful use by primary care action on health behaviors and key psychosocial factors

Background

Electronic health records (EHR) have the potential to improve patient care through efficient access to complete patient health information. This potential may not be reached because many of the most important determinants of health outcome are rarely included. Successful health promotion and disease prevention requires patient-reported data reflecting health behaviors and psychosocial issues. Furthermore, there is a need to harmonize this information across different EHR systems.

Methods

To fill this gap a three-phased process was used to conceptualize, identify and recommend patient-reported data elements on health behaviors and psychosocial factors for the EHR. Expert panels (n=13) identified candidate measures (phase 1) that were reviewed and rated by a wide range of health professionals (n=93) using the grid-enabled measures wiki social media platform (phase 2). Recommendations were finalized through a town hall meeting with key stakeholders including patients, providers, researchers, policy makers, and representatives from healthcare settings (phase 3).

Results

Nine key elements from three areas emerged as the initial critical patient-reported elements to incorporate systematically into EHR—health behaviors (eg, exercise), psychosocial issues (eg, distress), and patient-centered factors (eg, demographics). Recommendations were also made regarding the frequency of collection ranging from a single assessment (eg, demographic characteristics), to annual assessment (eg, health behaviors), or more frequent (eg, patient goals).

Conclusions

There was strong stakeholder support for this initiative reflecting the perceived value of incorporating patient-reported elements into EHR. The next steps will include testing the feasibility of incorporating these elements into the EHR across diverse primary care settings.     

Effects of librarian-provided services in healthcare settings: a systematic review

Objective

To assess the effects of librarian-provided services in healthcare settings on patient, healthcare provider, and researcher outcomes.

Materials and methods

Medline, CINAHL, ERIC, LISA (Library and Information Science Abstracts), and the Cochrane Central Register of Controlled Trials were searched from inception to June 2013. Studies involving librarian-provided services for patients encountering the healthcare system, healthcare providers, or researchers were eligible for inclusion. All librarian-provided services in healthcare settings were considered as an intervention, including hospitals, primary care settings, or public health clinics.

Results

Twenty-five articles fulfilled our eligibility criteria, including 22 primary publications and three companion reports. The majority of studies (15/22 primary publications) examined librarians providing instruction in literature searching to healthcare trainees, and measured literature searching proficiency. Other studies analyzed librarian-provided literature searching services and instruction in question formulation as well as the impact of librarian-provided services on patient length of stay in hospital. No studies were found that investigated librarians providing direct services to researchers or patients in healthcare settings.

Conclusions

Librarian-provided services directed to participants in training programs (eg, students, residents) improve skills in searching the literature to facilitate the integration of research evidence into clinical decision-making. Services provided to clinicians were shown to be effective in saving time for health professionals and providing relevant information for decision-making. Two studies indicated patient length of stay was reduced when clinicians requested literature searches related to a patient''s case.     

A Self-scaling,Distributed Information Architecture for Public Health,Research, and Clinical Care

Objective

This study sought to define a scalable architecture to support the National Health Information Network (NHIN). This architecture must concurrently support a wide range of public health, research, and clinical care activities.

Study Design

The architecture fulfils five desiderata: (1) adopt a distributed approach to data storage to protect privacy, (2) enable strong institutional autonomy to engender participation, (3) provide oversight and transparency to ensure patient trust, (4) allow variable levels of access according to investigator needs and institutional policies, (5) define a self-scaling architecture that encourages voluntary regional collaborations that coalesce to form a nationwide network.

Results

Our model has been validated by a large-scale, multi-institution study involving seven medical centers for cancer research. It is the basis of one of four open architectures developed under funding from the Office of the National Coordinator of Health Information Technology, fulfilling the biosurveillance use case defined by the American Health Information Community. The model supports broad applicability for regional and national clinical information exchanges.

Conclusions

This model shows the feasibility of an architecture wherein the requirements of care providers, investigators, and public health authorities are served by a distributed model that grants autonomy, protects privacy, and promotes participation.     

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.     

How is the electronic health record being used? Use of EHR data to assess physician-level variability in technology use

Background

Studies of the effects of electronic health records (EHRs) have had mixed findings, which may be attributable to unmeasured confounders such as individual variability in use of EHR features.

Objective

To capture physician-level variations in use of EHR features, associations with other predictors, and usage intensity over time.

Methods

Retrospective cohort study of primary care providers eligible for meaningful use at a network of federally qualified health centers, using commercial EHR data from January 2010 through June 2013, a period during which the organization was preparing for and in the early stages of meaningful use.

Results

Data were analyzed for 112 physicians and nurse practitioners, consisting of 430 803 encounters with 99 649 patients. EHR usage metrics were developed to capture how providers accessed and added to patient data (eg, problem list updates), used clinical decision support (eg, responses to alerts), communicated (eg, printing after-visit summaries), and used panel management options (eg, viewed panel reports). Provider-level variability was high: for example, the annual average proportion of encounters with problem lists updated ranged from 5% to 60% per provider. Some metrics were associated with provider, patient, or encounter characteristics. For example, problem list updates were more likely for new patients than established ones, and alert acceptance was negatively correlated with alert frequency.

Conclusions

Providers using the same EHR developed personalized patterns of use of EHR features. We conclude that physician-level usage of EHR features may be a valuable additional predictor in research on the effects of EHRs on healthcare quality and costs.     

US and Scottish Health Professionals' Attitudes toward DNA Biobanking

Background

The authors define a DNA biobank as a repository of genetic information correlated with patient medical records. DNA biobanks may assist in the research and identification of genetic factors influencing disease and drug interactions, but may raise ethical issues. How healthcare providers perceive DNA biobanks is unknown.

Objectives

To determine how useful healthcare professionals believe DNA biobanks will be and whether these attitudes differ between private and socialized healthcare systems.

Design

The authors surveyed 200 healthcare professionals, including research and non-research focused doctors, nurses and other staff from medical centers and independent practice in both the United States and Scotland. The survey included fifteen items evaluated for general receptiveness toward biobanks, presumed usefulness of biobanks and perceived attitudes in recruiting patients for a biobank.

Measurements

A total of 81 (45%) of 179 eligible participants responded: 41 from the U.S. and 40 from Scotland. Of these respondents, most (70%) were from academic centers.

Results

Results indicate that there is a broadly favorable attitude in both locations toward the creation of a DNA biobank (83%) and its perceived benefit (75%). This enthusiasm is tempered in Scotland when respondents evaluated their comfort in consenting patients for entry into a biobank; 16 of 40 respondents (40%) were uncomfortable doing so, representing a significant difference from those in the U.S. (p=0.001).

Conclusions

Despite systematic differences in healthcare practice between the U.S. and Scotland, health care professionals in both nations believe DNA biobanks will be useful in curing disease. This finding appears to support further development of such a research tool.     

Valuable Radiographic Tool for Odontogenic Jaw Keratocyst Diagnosis and Surgical Planning

Objective:

To investigate the clinical use of cone beam computed tomography in the diagnosis of patients with odontogenic jaw keratocyst and to guide computer-aided surgical treatment planning.

Methods:

Imaging, image processing, and visualization technologies were used to produce clear diagnosis, provide proper treatment, and formulate favourable prognosis. Cone beam computed tomography was used to collect medical information including site, extent, shape, and other characteristic features of a patient with large odontogenic jaw keratocyst.

Results:

The imaging technique produced excellent results in imaging, image processing and threedimensional (3D) visualization.

Conclusion:

The 3D digital reconstruction model of the odontogenic jaw keratocyst was shown intuitively.     

Assessment of internet use and effects among healthcare professionals: a cross sectional survey

Purpose

Several studies have explored the scientific platforms on patient use of the internet for health information. In contrast physicians'' perspective on evolving internet environment is lacking. The purpose of this study is to assess and correlate the extent of internet use among healthcare professionals and examine its effects on clinical practice.

Methods

Cross sectional survey conducted in the USA using questionnaires distributed randomly to healthcare professionals attending distinct continuing medical education programmes between 2003 and 2004. Multiple choice and yes/no questions related to the trends of internet use and its effects on clinical practice were extracted and responses analysed. The main outcome measures are self reported rates of internet use, perceived effects, and the role of medical web sites in clinical practice.

Results

The overall response rate was 60%. A total of 277 survey respondents (97%) had internet access. Some 7% in private practice and 1% of group practice physicians did not have internet access. Most (71%) used the internet regularly for medical or professional updating and 62% (n = 178) felt the need for sharing web sites designed for healthcare professionals with patients. Some 27% of the physicians currently own established personal practice web sites. Sixty three per cent have recommended a web site to a patient for more information, matching the positive trust (>70%) on the general quality of selected medical web sites.

Conclusion

This cross sectional survey shows that internet use and web based medical information is widely popular among physicians and patients. About 23%–31% of the healthcare professionals report >80% interaction with web informed patients in their daily practice.     

Care transitions as opportunities for clinicians to use data exchange services: how often do they occur?

Background

The electronic exchange of health information among healthcare providers has the potential to produce enormous clinical benefits and financial savings, although realizing that potential will be challenging. The American Recovery and Reinvestment Act of 2009 will reward providers for ‘meaningful use’ of electronic health records, including participation in clinical data exchange, but the best ways to do so remain uncertain.

Methods

We analyzed patient visits in one community in which a high proportion of providers were using an electronic health record and participating in data exchange. Using claims data from one large private payer for individuals under age 65 years, we computed the number of visits to a provider which involved transitions in care from other providers as a percentage of total visits. We calculated this ‘transition percentage’ for individual providers and medical groups.

Results

On average, excluding radiology and pathology, approximately 51% of visits involved care transitions between individual providers in the community and 36%–41% involved transitions between medical groups. There was substantial variation in transition percentage across medical specialties, within specialties and across medical groups. Specialists tended to have higher transition percentages and smaller ranges within specialty than primary care physicians, who ranged from 32% to 95% (including transitions involving radiology and pathology). The transition percentages of pediatric practices were similar to those of adult primary care, except that many transitions occurred among pediatric physicians within a single medical group.

Conclusions

Care transition patterns differed substantially by type of practice and should be considered in designing incentives to foster providers'' meaningful use of health data exchange services.     

The PSA tracker: A computerised health care system initiative in Northern Ireland

Intoduction

The follow-up of men with prostate cancer forms a large part of many urologists workload. However, a rising PSA usually announces disease progression long before any clinically apparent symptom. Thus, many men can be safely monitored with PSA measurement alone. To facilitate this process, PSA tracking software was introduced to remotely monitor PSA results, minimising the work required for follow-up.

Methods

Stable prostate cancer patients were into the PSA tracker. When each PSA test was performed, the result was reviewed. The program automatically generated patient reminder letters, summary reports for clinic use and all correspondence to patients and primary care physicians.

Results

Since 2006, 65 patients have been entered into the PSA tracker. Median age was 81 (57–94) years. 274 outpatient appointments have been saved, indicating a potential saving of £32,000. More importantly it increased the capacity of the department to assess new patients. For the individual patient, the system has saved them, a median of 3 appointments each.

Conclusion

Remote follow-up of prostate cancer is associated with significant savings for both healthcare organisations and individual patients. This example, further demonstrates the benefits of implanting healthcare software for patients and hospitals.     

Hand hygiene practices among health care workers (HCWs) in a tertiary care facility in Pune

Background

Improper hand hygiene by healthcare workers (HCWs) is responsible for about 40% of nosocomial infections resulting in prolonged illnesses, hospital stays, long-term disability and unexpected high costs on patients and their families, and also lead to a massive additional financial burden on the health-care system.

Objective

To assess knowledge and practices regarding hand hygiene among HCWs of a tertiary health care facility.

Methods

A cross sectional, questionnaire and observation based study was carried out in a tertiary care health care facility in Pune. Based on sample size calculations, 100 HCWs working in medical and surgical wards were studied.

Results

The proportion knowledgeable about hand hygiene practices was 85% and 73% HCWs were of the belief that unclean hands are an important route of cross transmission. WHO guidelines regarding procedure were being followed by 90% for hand washing with soap and water and 64% for alcohol based rubs. Majority preferred hand washing with soap and water over hand rubbing with alcohol based solutions. 21% of HCWs were missing hand hygiene opportunities 1 in 5 times. Heavy workload (38%), non availability (52%) and inaccessibility (9%) of hand hygiene facilities were the common reasons for non-compliance. Availability of ‘one time use paper towels’ was low (12%).

Conclusion

Inadequate compliance despite knowledge and false sense of security by alcohol based rubs was seen. A multi disciplinary, multifaceted approach is required to tackle issues of non-compliance.