Session: Building and Maintaining Public Trust in Data Sharing
In order to build and maintain trust related to data sharing, we need to engage with and listen to members of the public AND act on what we hear. This talk will present the findings of qualitative research studies that describe the conditions under which members of the public supported the use of health data for R&D. The talk will conclude with examples of activities that use advice from the members of the public to increase the transparency and trustworthiness data sharing and data use.
- Members of the public generally support their data being used for research, providing that privacy is protected and risks are managed.
- You can't have trust without transparency, and you can't have transparency without plain language.
- It is important that there is a perceived public benefit (not just commercial benefit) when person-level data are shared and used by external organizations.
P. Alison Paprica is Executive Advisor and Affiliate Scientist at ICES, and Chair of the Public Engagement Working Group a member of the Executive Committee for Health Data Research Network Canada. Her previous roles include inaugural Vice President, Health Strategy and Partnerships at the Vector Institute for Artificial Intelligence; inaugural Director, Strategic Partnerships at ICES; Director of the Planning, Research & Analysis Branch at the Ontario Ministry of Health; and management positions in international pharmaceutical R&D.
Alison holds an Honours Combined BSc in biochemistry and chemistry (McMaster, summa cum laude), a PhD in organic chemistry (Western University, NSERC Scholarship), and a status appointment as Assistant Professor at the Institute for Health Policy, Management and Evaluation at the University of Toronto with a cross appointment to the Faculty of Medicine. Her main research interests are evidence-informed policy, public involvement in data-intensive health R&D, and the leadership and management of research as a topic in its own right. Alison is a Senior Fellow at the University of Toronto’s Massey College, a member of the Board of Directors at Ontario Genomics, and a member of the International Advisory Board for Health Data Research UK.