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Patient stakeholders are getting increasingly involved in research health data networks, particularly as research partners. However, tools do not exist to help effectively orient, educate, and engage patient stakeholders as they take on these roles. Using a human centered design approach, we conducted a patient stakeholder needs assessment qualitative study to identify key user needs to drive design recommendations for development of an online education and engagement tool for research health data networks. We found three key needs related to multiple role identities, motivations and expectations for participation on research teams, and patient journeys. Design recommendations derived from the needs assessment are discussed that can support future tool design and testing.

Context: The widespread adoption of electronic health records (EHRs) offers significant opportunities to conduct research with clinical data from patients outside traditional academic research settings. Because EHRs are designed primarily for clinical care and billing, significant challenges are inherent in the use of EHR data for clinical and translational research. Efficient processes are needed for translational researchers to overcome these challenges. The Data QUEST Coordinating Center (DQCC), which oversees Data Query Extraction Standardization Translation (Data QUEST) – a primary-care, EHR data-sharing infrastructure – created processes that guide EHR data extraction for clinical and translational research across these diverse practices. We describe these processes and their application in a case example. Case Description: The DQCC process for developing EHR data extractions not only supports researchers’ access to EHR data, but supports this access for the purpose of answering scientific questions. This process requires complex coordination across multiple domains, including the following: (1) understanding the context of EHR data; (2) creating and maintaining a governance structure to support exchange of EHR data; and (3) defining data parameters that are used in order to extract data from the EHR. We use the Northwest-Alaska Pharmacogenomics Research Network (NWA-PGRN) as a case example that focuses on pharmacogenomic discovery and clinical applications to describe the DQCC process. The NWA-PGRN collaborates with Data QUEST to explore ways to leverage primary-care EHR data to support pharmacogenomics research. Findings: Preliminary analysis on the case example shows that initial decisions about how researchers define the study population can influence study outcomes. Major Themes and Conclusions: The experience of the DQCC demonstrates that coordinating centers provide expertise in helping researchers understand the context of EHR data, create and maintain governance structures, and guide the definition of parameters for data extractions. This expertise is critical to supporting research with EHR data. Replication of these strategies through coordinating centers may lead to more efficient translational research. Investigators must also consider the impact of initial decisions in defining study groups that may potentially affect outcomes.

Health data sharing with and among practices is a method for engaging rural and underserved populations, often with strong histories of marginalization, in health research. The Institute of Translational Health Sciences, funded by a National Institutes of Health Clinical and Translational Science Award, is engaged in the LC Data QUEST project to build practice and community based research networks with the ability to share semantically aligned electronic health data. We visited ten practices and communities to assess the feasibility of and barriers to developing data sharing networks. We found that these sites had very different approaches and expectations for data sharing. In order to support practices and communities and foster the acceptance of data sharing in these settings, informaticists must take these diverse views into account. Based on these findings, we discuss system design implications and the need for flexibility in the development of community-based data sharing networks.

Topic guide. Questions used in focus groups/semi-structured interviews. (DOCX 17 kb)

Quotations supporting themes. Participant quotes illustrating themes. (DOCX 25 kb)

Quotations supporting themes. Participant quotes illustrating themes. (DOCX 25 kb)

BACKGROUND: Point-of-care tests (POCTs) are increasingly used in family medicine clinics in the United States. While the diagnostics industry predicts significant growth in the number and scope of POCTs deployed, little is known about clinic-level attitudes towards implementation of these tests. We aimed to explore attitudes of primary care providers, laboratory and clinic administrative/support staff to identify barriers and facilitators to use of POCTs in family medicine. METHODS: Seven focus groups and four semi-structured interviews were conducted with a total of 52 clinic staff from three family medicine clinics in two US states. Qualitative data from this exploratory study was analyzed using the constant comparison method. RESULTS: Five themes were identified which included the impact of POCTs on clinical decision-making; perceived inaccuracy of POCTs; impact of POCTs on staff and workflow; perceived patient experience and patient-provider relationship, and issues related to cost, regulation and quality control. Overall, there were mixed attitudes towards use of POCTs. Participants believed the added data provided by POCT may facilitate prompt clinical management, diagnostic certainty and patient-provider communication. Perceived barriers included inaccuracy of POCT, shortage of clinic staff to support more testing, and uncertainty about their cost-effectiveness. CONCLUSIONS: The potential benefits of using POCTs in family medicine clinics are countered by several barriers. Clinical utility of many POCTs will depend on the extent to which these barriers are addressed. Engagement between clinical researchers, industry, health insurers and the primary care community is important to ensure that POCTs align with clinic and patient needs.