A Tale of 2 Constituencies

Abstract

Background:Patient and clinician stakeholders are inadequately engaged in key aspects of research, particularly regarding use of Big Data to study and improve patient-centered outcomes. Little is known about the attitudes, interests, and concerns of stakeholders regarding such data.Research Design:The New York City Clinical Data Research Network (NYC-CDRN), a collaboration of research, clinical, and community leaders built a deidentified dataset containing electronic health records from millions of New Yorkers. Guided by a patient-clinician advisory board, we developed a question guide to explore patient and clinician experiences and ideas about research using large datasets. Trained facilitators led discussions during preexisting patient, community, and clinician group meetings. The research team coded meeting notes and identified themes.Results:Fully 272 individuals participated in 19 listening sessions (139 patients/advocates, 133 clinicians) at 6 medical centers with diverse NYC communities: 76% were female and 63% were nonwhite. Clinicians and patients agreed on all major themes including the central role of clinicians in introducing patients to research and the need for public campaigns to inform stakeholders about Big Data. Stakeholders were interested in using granular data to compare the care and clinical outcomes of their neighborhoods with others across NYC, but were also concerned that data could not truly be deidentified.Conclusions:Clinicians and patients agree on potential benefits of stakeholder-engaged Big Data research and provided suggestions for further research and building stakeholder research capacity. This evaluation demonstrated the potential of brief meetings with existing patient and clinical groups to explore barriers and facilitators to patient and clinician engagement.

Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence

“…http://jme.bmj.com/ J Med Ethics: first published as 10.1136/medethics-2019-105651 on 12 November 2019. Downloaded from Concerns that data could not truly be deidentified 32 If data sharing is motivated by financial gain or profit 20…”

“…Central role of clinicians in introducing patients to research 32 options and more efficient use of resources. Patients seem to also value the potential of (direct) personal health benefits.…”

Effective Engagement Requires Trust and Being Trustworthy

“…The NYC Clinical Data Research Network modified its engagement strategies to facilitate involvement of people with limited trust and found lack of trust to be associated with concerns about data privacy and security, and lack of confidence that findings would be shared with the community. 2 Within PCORnet, most networks identified trust as essential to achieving high levels of engagement and the need to build and nurture trust was clear. 3 The recurring themes of trust and trustworthiness in public engagement also highlights the gap in our knowledge related to the underpinnings of trust in community-academic relationships, the need to measure, track, and improve trust, and the responsibility of researchers to become more trustworthy.…”

Patient engagement in a national research network: barriers, facilitators, and impacts

“…Further, little is known about patient engagement in the context of large teams or networks. Most of the literature that exists comes from research conducted in the U.S. and is descriptive in nature, highlighting reflections on challenges, successes, and methods used to evaluate engagement [12][13][14][15][16][17][18][19]. One study in the U.S. systematically evaluated the engagement experiences of patient-partners in a patient-oriented research network and identified facilitators of engagement such as communicating clear expectations and assessing engagement on a regular basis [20].…”