Core Programme 4: Public Engagement
Dr Claudia Pagliari, Prof Sarah Cunningham-Burley, Prof Jeremy Wyatt, Prof Graeme Laurie, Prof Ian Ford
Aims
- To synthesise existing evidence on citizens' attitudes towards and willingness to share personal data for research.
- To generate new evidence on the acceptability of different levels of data sharing under varying conditions.
- To engage the wider public with the aims, processes and outcomes of the SHIP through specific consultation exercises and workshops.
- To link the public engagement activities into the development of governance frameworks (C2).
- To examine novel methods of making health data available to the public.
Background
While research using EPR offers potential to advance scientific knowledge and improve patient and population health, public concern over the possible misuse of personal data, exacerbated by reports of 'data losses' and confidentiality breaches, has prompted increasing regulation of access, which some argue is hindering innovation. Optimising the balance between enabling research for 'the public interest' and respecting the confidentiality needs of individual patients remains a critical challenge for EPR research. However, little robust evidence of consumers' attitudes, understanding and tolerances around research uses of personal health data exists to guide the development of governance policies for EPR research.
This work stream recognises that effective public engagement is essential for maximising research participation and will therefore be a critical factor in realising the vision for the SHIP. The theme has four complementary strands:
Systematic review of existing research (Prof Jeremy Wyatt, Dr Claudia Pagliari)
A number of studies have attempted to assess consumer knowledge, attitudes and behaviour towards the use EPR for clinical management and research, as well as towards personal data in general. However, there is a need for a major piece of work to capture, synthesise, critically evaluate and interpret this body of evidence so as to best inform practice and guide future research in this area. We will undertake a comprehensive and systematic review of existing empirical studies using rigorous approaches to searching, data extraction and analysis and encompassing both the academic and 'grey' literatures. The review will cover a variety of research questions and designs including surveys, qualitative studies, discrete choice experiments and trials of recruitment methods.
New empirical research using discrete choice experiments (Dr Claudia Pagliari, Prof Jeremy Wyatt)
We will address the lack of robust evidence on consumer attitudes to data sharing, by conducting new empirical research, using discrete choice experiments (DCEs) to measure the factors influencing consumers’ decision making about consent and access. We will compare decisions regarding secondary uses of personal data under various scenarios, in the context of clinical care and non-health domains such as online banking. The outcomes of interest will be participants' willingness to share their personal data and perceived need for consent.
Public involvement and engagement (Prof Sarah Cunningham-Burley, Dr Claudia Pagliari)
Effective public engagement requires going beyond simple information dissemination to actively seeking dialogue and partnership. This stream will focus on involving the public in a series of activities exploring the acceptability and potential benefits of EPR sharing and to raise awareness of the aims of the SHIP. These exercises will be analysed qualitatively, with findings fed back to SHIP researchers. An objective will be to seek cross-sectoral support for the aims of the SHIP, recognising the critical role of the informed citizen to its future success and effective governance.
Public access to data (Prof Ian Ford)
Working with SHIS-R we will evaluate whether we can provide access to summaries of health data via a public portal permitting citizens to create customized views of trends and patterns in health outcomes in their own geographical area and nationally, in a way that protects patient confidentiality. In particular, we will test whether these systems are fit for purpose for use in secondary education, with the aim of providing material to support teaching and learning in Personal and Social Education, Mathematics/Statistics, Human Biology and Geography.
Deliverables
Drawing on the above exercises we will develop a conceptual map, elucidating the various themes underlying the policy debate (e.g. privacy, consent, control, choice, empowerment, respect, liability) and the dimensions likely to influence patient and public attitudes towards data sharing (e.g. sensitivity, anonymity, perceived benefit). The results of these research exercises will be synthesised in reports containing recommendations for policy, practice and public engagement. This work will also be adapted for multiple audiences and disseminated through a range of public and professional channels such as our website, targeted email and professional and general newspaper articles.