International Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research

Abstract

IntroductionData-intensive health research is a fast moving field in which public involvement and engagement (PI\&E) is essential for developing socially acceptable and ethically robust processes and ensuring a social license for research practices. Nevertheless while some consensus is emerging around the importance of PI\&E, commitments and practices are varied.
 Objectives and ApproachOur objective was to identify a set of principles which would underpin international best practice in data-intensive health research.
 A one-day consensus workshop was held in Manchester, U.K. in April 2017 and attended by 31 international participants from six countries, with a range of expertise relating to PI&E with data-intensive health research. Participants took part in facilitated discussions to identify key principles and a consensus statement was written to reflect the discussions at the workshop, this developed through iterative drafts on which all workshop participants as well as the four Farr Institute public panels were consulted.
 ResultsThe consensus statement sets out key principles to establish a secure role for PI&E related to data-intensive health research internationally and to ensure best practice in its execution. While methods used may not vary greatly from PI&E with other types of research, or other policy areas, we have identified a number of particular features of data-intensive health research which make PI&E in this area worthy of special consideration. Often using data from multiple sources without explicit consent, PI&E in data-intensive health research is particularly important for raising awareness, for giving people a voice and for enabling people to participate in processes of research and governance. The consensus statement sets out the key principles to guide future best practice in PI&E with data-intensive health research.
 Conclusion/ImplicationsThe emergence of data intensive health research and the importance of the social contract upon which it relies, demands that we move beyond rhetorical commitments and engage anew with clearly stated principles to build PI\&E into data-intensive health research at all levels.

Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada

“…Building on this base, further research is needed to understand how underlying values translate to potential tradeoffs, such as (but not exclusive to) between research and privacy, and how risks can be mitigated. Including the public in development of these policies is consistent with a recent consensus statement on principles of public engagement for data-intensive research [11]. The importance of doing so is highlighted in cases where the perception of inadequate consultation resulted in data sharing projects being derailed (e.g., care.data in the UK) [12,13].…”

Population data science: advancing the safe use of population data for public benefit

“…Other data-intensive initiatives have similar general public panels that provide invaluable advice and input for socially-acceptable conduct in the use of population data. Their commitment to public engagement is further demonstrated by the contributions of many international authors, from countries including the UK, Canada, Australia, the Netherlands, Finland, and Ireland, to the consensus statement [8].…”

“…A recently published international consensus paper sets out key principles of best practice in this important area. These include the need for transparency, inclusivity, and on-going engagement as a developmental process [8].…”

Civil society stakeholder views on forensic DNA phenotyping: Balancing risks and benefits

“…More broadly, public engagement is widely seen as a necessary condition for good research practice, and this is part of a broader shift in science governance that includes engagement and deliberation strategies within understandings of responsible research and innovation (for example, see [13,16,17]). Indeed, evidence is emerging on the beneficial impact of public engagement strategies [18], which are seen to empower members of the public to play a role in shaping current or future research or governance practices [19]. Given this, calls for engagement with stakeholders and the wider public specifically in the area of genomic technologies more broadly [1,[20][21][22] and particularly in the forensics arena [23][24][25][26], have been particularly prominent, while other authors have called for caution about engagement strategies and practices that may turn out to be tokenistic or merely symbolic.…”