Dataset Information

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

ABSTRACT:

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.

SUBMITTER: Ancker JS

PROVIDER: S-EPMC4078272 | biostudies-literature | 2014 Jul-Aug

REPOSITORIES: biostudies-literature

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Publications

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

Ancker Jessica S JS Miller Melissa C MC Patel Vaishali V Kaushal Rainu R

Journal of the American Medical Informatics Association : JAMIA 20130924 4

<h4>Background</h4>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.<h4>Objective</h4>To follow the development of new consume ...[more]

PMID: 24064443

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Project description:BackgroundThe privacy of patients with mental health conditions is prominent in health information exchange (HIE) discussions, given that their potentially sensitive personal health information (PHI) may be electronically shared for various health care purposes. Currently, the patient privacy perspective in the mental health context is not well understood because of the paucity of in-depth patient privacy research; however, the evidence suggests that patient privacy perspectives are more nuanced than what has been assumed in the academic and health care community.ObjectiveThis study aimed to generate an understanding on how patients with mental health conditions feel about privacy in the context of HIE in Canada. This study also sought to identify the factors underpinning their privacy perspectives and explored how their perspectives influenced their attitudes toward HIE.MethodsSemistructured interviews were conducted with patients at a Canadian academic hospital for addictions and mental health. Guided by the Antecedent-Privacy Concern-Outcome macro-model, interview transcripts underwent deductive and inductive thematic analyses.ResultsWe interviewed 14 participants. Their privacy concerns varied, depending on the participant's privacy experiences and health care perceptions. Media reports of privacy breaches and hackers had little impact on participants' privacy concerns because of a fatalistic belief that privacy breaches are a reality in the digital age. Rather, direct observations and experiences with the mistreatment of PHI in health care settings caused concern. Decisions to trust others with PHI depended on past experiences with the individual (or institution) and health care needs. Participants had little knowledge of patient privacy rights and legislation but were willing to participate in HIE because of perceived individual and societal benefits.ConclusionsThis study introduces evidence that patients with mental health conditions would support HIE. Participants were pragmatic, supporting HIE because they wanted the best care possible. They also understood that their PHI was critical in supporting the single-payer Canadian health care system. Participant health care experiences informed their privacy perspectives, trust, and PHI sharing attitudes-all accentuating the importance of the patient experience in building trust in HIE. Their lack of knowledge about patient rights and PHI uses highlights the degree of trust they have in the health care system to protect their privacy. These findings suggest that the patient privacy discourse should extend beyond the oft-cited barrier of patient privacy concerns to include discussions about building trust, communicating the benefits of HIE, and improving patient experiences. Although our findings are in the Canadian context, this study highlights the importance of engaging patients in privacy policy discussions, regardless of jurisdiction, to ensure their nuanced perspectives are reflected in policy decisions on their PHI.

Project description:ObjectiveTo provide a case report of barriers and promoters to implementing a health information exchange (HIE) tool that supports patient transfers between hospitals and skilled nursing facilities.MethodsA multi-disciplinary team conducted semi-structured telephone and in-person interviews in a purposive sample of HIE organizational informants and providers in New York City who implemented HIE to share patient transfer information. The researchers conducted grounded theory analysis to identify themes of barriers and promoters and took steps to improve the trustworthiness of the results including vetting from a knowledgeable study participant.ResultsBetween May and October 2011, researchers recruited 18 participants: informaticians, healthcare administrators, software engineers, and providers from a skilled nursing facility. Subjects perceived the HIE tool's development a success in that it brought together stakeholders who had traditionally not partnered for informatics work, and that they could successfully share patient transfer information between a hospital and a skilled nursing facility. Perceived barriers included lack of hospital stakeholder buy-in and misalignment with clinical workflows that inhibited use of HIE-based patient transfer data. Participants described barriers and promoters in themes related to organizational, technical, and user-oriented issues. The investigation revealed that stakeholders could develop and implement health information technology that technically enables clinicians in both hospitals and skilled nursing facilities to exchange real-time information in support of patient transfers. User level barriers, particularly in the emergency department, should give pause to developers and implementers who plan to use HIE in support of patient transfers.ConclusionsParticipants' experiences demonstrate how stakeholders may succeed in developing and piloting an electronic transfer form that relies on HIE to aggregate, communicate, and display relevant patient transfer data across health care organizations. Their experiences also provide insights for others seeking to develop HIE applications to improve patient transfers between emergency departments and skilled nursing facilities.

Project description:BACKGROUND:Cancer control programs have added patient navigation to improve effectiveness in underserved populations, but research has yielded mixed results about their impact on patient satisfaction. This study focuses on three related research questions in a U.S. state cancer screening program before and after a redesign that added patient navigators and services for chronic illness: Did patient diversity increase; Did satisfaction levels improve; Did socioeconomic characteristics or perceived barriers explain improved satisfaction. METHODS:Representative statewide patient samples were surveyed by phone both before and after the program design. Measures included satisfaction with overall health care and specific services, as well as experience of eleven barriers to accessing health care and self-reported health and sociodemographic characteristics. Multiple regression analysis is used to identify independent effects. RESULTS:After the program redesign, the percentage of Hispanic and African American patients increased by more than 200% and satisfaction with overall health care quality rose significantly, but satisfaction with the program and with primary program staff declined. Sociodemographic characteristics explained the apparent program effects on overall satisfaction, but perceived barriers did not. Further analysis indicates that patients being seen for cancer risk were more satisfied if they had a patient navigator. CONCLUSIONS:Health care access can be improved and patient diversity increased in public health programs by adding patient navigators and delivering more holistic care. Effects on patient satisfaction vary with patient health needs, with those being seen for chronic illness likely to be less satisfied with their health care than those being seen for cancer risk. It is important to use appropriate comparison groups when evaluating the effect of program changes on patient satisfaction and to consider establishing appropriate satisfaction benchmarks for patients being seen for chronic illness.

Project description:BackgroundPatients with co-occurring behavioral health and chronic medical conditions frequently overuse inpatient hospital services. This pattern of overuse contributes to inefficient health care spending. These patients require coordinated care to achieve optimal health outcomes. However, the poor exchange of health-related information between various clinicians renders the delivery of coordinated care challenging. Health information exchanges (HIEs) facilitate health-related information sharing and have been shown to be effective in chronic disease management; however, their effectiveness in the delivery of integrated care is less clear. It is prudent to consider new approaches to sharing both general medical and behavioral health information.ObjectiveThis study aims to identify and describe factors influencing the intention to use behavioral health information that is shared through HIEs.MethodsWe used a mixed methods design consisting of two sequential phases. A validated survey instrument was emailed to clinical and nonclinical staff in Alabama and Oklahoma. The survey captured information about the impact of predictors on the intention to use behavioral health data in clinical decision making. Follow-up interviews were conducted with a subsample of participants to elaborate on the survey results. Partial least squares structural equation modeling was used to analyze survey data. Thematic analysis was used to identify themes from the interviews.ResultsA total of 62 participants completed the survey. In total, 63% (n=39) of the participants were clinicians. Performance expectancy (β=.382; P=.01) and trust (β=.539; P<.001) predicted intention to use behavioral health information shared via HIEs. The interviewees (n=5) expressed that behavioral health information could be useful in clinical decision making. However, privacy and confidentiality concerns discourage sharing this information, which is generally missing from patient records altogether. The interviewees also stated that training for HIE use was not mandatory; the training that was provided did not focus specifically on the exchange of behavioral health information.ConclusionsDespite barriers, individuals are willing to use behavioral health information from HIEs if they believe that it will enhance job performance and if the information being transmitted is trustworthy. The findings contribute to our understanding of the role HIEs can play in delivering integrated care, particularly to vulnerable patients.

Project description:Background: Ethiopia is investing in the routine Health Management Information System. Improved routine data are needed for decision-making in the health sector. Objective: To analyse the quality of the routine Health Management Information System data and triangulate with other sources, such as the Demographic and Health Surveys. Methods: We analysed national Health Management Information System data on 19 indicators of maternal health, neonatal survival, immunization, child nutrition, malaria, and tuberculosis over the 2012-2018 time period. The analyses were conducted by 38 analysts from the Ministry of Health, Ethiopia, and two government agencies who participated in the Operational Research and Coaching for Analysts (ORCA) project between June 2018 and June 2020. Using a World Health Organization Data Quality Review toolkit, we assessed indicator definitions, completeness, internal consistency over time and between related indicators, and external consistency compared with other data sources. Results: Several services reported coverage of above 100%. For many indicators, denominators were based on poor-quality population data estimates. Data on individual vaccinations had relatively good internal consistency. In contrast, there was low external consistency for data on fully vaccinated children, with the routine Health Management Information System showing 89% coverage but the Demographic and Health Survey estimate at 39%. Maternal health indicators displayed increasing coverage over time. Indicators on child nutrition, malaria, and tuberculosis were less consistent. Data on neonatal mortality were incomplete and operationalised as mortality on day 0-6. Our comparisons with survey and population projections indicated that one in eight early neonatal deaths were reported in the routine Health Management Information System. Data quality varied between regions. Conclusions: The quality of routine data gathered in the health system needs further attention. We suggest regular triangulation with data from other sources. We recommend addressing the denominator issues, reducing the complexity of indicators, and aligning indicators to international definitions.

Dataset Information

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

Background

Objective

Methods

Results

Conclusions

Publications

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

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