How Appropriate Is All This Data Sharing? Building Consensus Around What We Need to Know About Shared Electronic Health Records in Extended Circles of Care.

BACKGROUND: The bulk of healthcare spending is on individuals who have complex needs related to age, income, chronic disease and mental illness. Care involves many different professions, and interoperable electronic health records (EHRs) are increasingly essential.

OBJECTIVES: The objective of this paper is to describe the use of a nominal group technique (NGT) to develop a stakeholder-centred research agenda for clinical interoperability in extended circles of care that include social supports.

METHODS: We held a day-long meeting with 30 stakeholders, including primary care providers, social supports, patient representatives, health region managers, technology experts, health organizations and experts in privacy, law and ethics. Participants considered, "What research needs to be done to better understand how EHRs should be shared across large healthcare teams that include social supports?" Following sensitizing presentations from researchers and participants, we used an NGT to generate and rank research questions on a 9-point Likert scale. We retained research questions that had a mean score of at least 6.5/9 by at least 70% of the participants over two rounds of consensus-building.

RESULTS: Participants identified and ranked 57 research questions. Five items achieved consensus, related to 1) the impact of information sharing on care team outcomes, 2) data quality/accuracy, 3) cost/benefit, 4) what processes use what data and 5) regulation/legislation.

CONCLUSION: Healthcare reforms are increasingly focused on systems that integrate and coordinate multidisciplinary care, facilitated by EHRs. Research prioritization will ensure common concerns and barriers are addressed and resolved.