Suchergebnisse

BackgroundThere has, in recent years been much discussion in administrative data research about communicating with the public about the research undertaken, listening to the public and trying to understand public views and questioning whether the public have trust in the work undertaken using publicly collected administrative data.
ObjectivesTo explore the role of public engagement in dialogue with attendees to try and address whether we are missing the point and value of public engagement. The views of publics are not homogenous, static and also respond to news headlines and data breaches and we can never know the views of 65 million people across the UK, so why do we worry so much about the views of the public and how can we ever know what publics think?
FindingsSummarising work undertaken in examining public attitudes and reflections on five years of working in public engagement in administrative data research will explore key questions with the audience including. Is there value in considering the views of the public, and if so what is the value? How is the public constituted in its relationships with academia and do the public play a key position in the role of universities within our society?

BackgroundCurrently in the UK, access to publicly collected administrative data for use in research, is only available to accredited researchers. However, administrative data may be of interest to commercial or private sector organisations, some of whom have already controversially been partnering with universities and health researchers in the recent case of an NHS Trust partnering with Google Deep Mind.
ObjectivesHow do we deal with the issue of commercial/private sector access openly and critically as a society?
MethodThis work will present the current landscape of commercial access to administrative data use and the results of a focus group with members of the public. Presented will be the views of the focus group in relation to different categories of commercial organisations and whether they should or should not be allowed access to administrative data and what conditions (if any) should be in place.
FindingsInitial findings indicate commercial access may be acceptable, but this raises new issues for society to consider about the role and extent of commercial/private sector reach.

IntroductionPublic benefits serve as a key justification for secondary uses of data in health research. Yet, while it is known that assurances of public benefits are vital for ongoing public support, there is a lack of clarity regarding what constitutes a public benefit.
Objectives and ApproachOur research aimed to understand public expectations regarding "public benefits" from health informatics research.
In May and June 2017 three full-day deliberative workshops were held with members of the public across Scotland (between 20 and 25 participants per workshop). Participants were selected through quota sampling to represent key demographic characteristics. Workshops were structured around brief introductory presentations, videos in which data scientists presented the ways in which their research was anticipated to lead to public benefits, small group discussions, plenary discussions and activities.
ResultsWorkshop participants generally conceptualised "the public" as being "everyone" and had an inclusive view of this often taking an international or global perspective. This led to preferences for research to benefit the widest possible public, however participants also discussed the potential for benefits to be focussed at vulnerable or disadvantaged groups. There were wide-ranging views on what would constitute a "benefit" and participants generally acknowledged the value in keeping this loosely defined. A key theme to emerge was that, while some research might benefit particular individuals or groups more than others, the benefits should be societal benefits. In discussing the various data science projects presented, it was considered important that research had mechanisms in place in order to realise the benefits it was aiming for.
Conclusion/ImplicationsPerceived public benefits are crucial for maintaining public support for health informatics research. Our workshops found that there is value in keeping "public benefits" as a broad, loosely defined term. Nevertheless, across each of the workshops the discussions suggested that research should benefit society as widely and fully as possible.

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.

ObjectivesThere were two objectives to this study: 1) to gauge public opinion on the use of Guthrie card-derived blood samples for epidemiological and biological research; and 2) to evaluate the feasibility of recovering meaningful molecular data from these samples.
ApproachTo address the first objective, a 2-day Citizens' Jury was conducted in partnership with Ipsos MORI, comprising a diverse adult sample in terms of age, sex, working status and social grade (n=20). Jurors were asked whether research access to Guthrie card blood tests would be in the public interest. To address the second objective, DNA methylation (DNAm) was profiled from samples from 58 Generation Scotland participants, whose Guthrie cards had been stored from birth for between 32 and 38 years. Analyses were performed on Guthrie DNAm samples to determine whether previously-reported associations with perinatal maternal smoking behaviours were detectable.
ResultsThe Citizens' Jury yielded an overall positive response towards data sharing for health research. Concerns were raised about data protection and security, control and oversight, and commercial use. The overall verdict was that access to Guthrie card data would be in the public interest, conditional on the purpose of the research, regulated access procedures, ethical oversight and provision of opportunities for participants to opt out.
DNAm detection rates from Guthrie samples were lower than from samples stored in tubes. However, it was possible to confirm linkage to the correct individuals in Generation Scotland using DNAm-derived estimates of genotype and sex. A significant association was observed between a DNAm-based score for smoking and perinatal maternal smoking status derived from the baseline Generation Scotland questionnaire.
ConclusionWe showed that: 1) public support exists for using Guthrie samples in research, conditional on certain safeguards; 2) DNAm can be profiled from cards stored for up to 38 years and can predict maternal smoking behaviour. Guthrie cards are a potentially valuable resource for epidemiological studies and predicting health outcomes.

This consensus statement reflects the deliberations of an international group of stakeholders with a range of expertise in public involvement and engagement (PI&E) relating to data-intensive health research. It sets out eight key principles to establish a secure role for PI&E in and with the research community internationally and ensure best practice in its execution. Our aim is to promote culture change and societal benefits through ensuring a socially responsible trajectory for innovations in this field.
Our key premise is that the public should not be characterised as a problem to be overcome but a key part of the solution to establish socially beneficial data-intensive health research for all.