The Health Data Research Hubs, launched in October 2019, are making rich data accessible and useful for efforts to discover new diagnostics, preventative medicine, medical research and the identification of value that drives better patient outcomes.
The input of patients and the public is crucial for ensuring that the use of datasets is safe and worthy of the trust and confidence of patients and the public. By involving patients and the public we can ensure that the vital research completed using health data provides public benefit and improve lives. Involving people throughout the Hub’s structure and processes helps the Hubs to save time and drive efficiencies by addressing issues they may not have considered. The Hubs’ novel, transparent ways of working with patients and the public is helping to develop trust in data for research, remove barriers to public engagement, and make balanced commercial decisions.
HDR UK’s aim is for the Hubs to become leading centres of excellence for researchers to discover and utilise health data, with the trust and confidence of patients, public and practitioners. To achieve this, research and innovation in health and care needs to be rooted in the needs and experiences of patients, families, carers and the public. The best articulation of these needs and experiences comes from working in partnership with patients and the public and requires high quality and innovative approaches to engagement and involvement.
Public and patient involvement and engagement (PPIE) is at the heart of the Hubs, with people from diverse backgrounds and knowledge of health research making contributions to decisions on how data is accessed, processed and utilised.
From representation on executive and scientific committees, to citizen deliberation on access requests, and involvement in the shaping of research projects, PPIE is changing the culture of health data research by making it more accessible and transparent, and helping to ensure that patients and the public can have trust in how their data is being used and protected.
Impact and Outcomes
Involvement of patients and the public, particularly minority voices such as people with disabilities and from the BAME and LGBTQI+ communities, has positively impacted on many of the Hubs’ processes.
Public oversight and development of policies has led to significant changes in the requesting and access of data, how data research is communicated with the public, and how data is used. Having a key role at a project level ensures the Hubs are meeting public expectations, with the PPIE representatives having the confidence to ask the important questions. For example, the Hub for respiratory health, BREATHE, engaged in a project exploring the use of Artificial Intelligence to enable public opinion to shape the COVID-19 pandemic response in Scotland, using social media to follow how people are feeling in real time. Their PPIE Lay Leads asked probing data security questions, including the steps taken to protect individuals’ privacy, and reflected on limitations of the work, such as the likely gap of input from seldom-heard communities. Their feedback delivered real impact, with the team developing a better understanding of public concerns and leading to further research in development to include seldom-heard communities.
The Hubs have each set up their own public committees, such as INSIGHT’s Data Trust Advisory Board, who developed a set of robust criteria for researchers wanting to access datasets, which achieves appropriate scrutiny whilst being feasible, efficient and scalable. PIONEER’s Data Trust Committee co-created a PPIE best practice document to be shared with requestors, highlighting the benefits of meaningful PPIE to the data requestor, and signposting mechanisms to interact. DATA-CAN’s PPIE group ensures the HDR UK Involvement and Engagement Guiding Principles are embedded across the work of the Hub. From being included in design and sign-off for communications materials, to being directly involved in the Hub’s Steering Board and Management Group, the patient and public voice is integrated into the Hub’s decision-making processes.
The PPIE teams have been instrumental in identifying and bringing together public voices. Discover-NOW supported one of the most progressive large-scale public deliberations in the UK about the use of health and care data, and used the recommendations formed their own Citizen Advisory Group as part of their commitment to engaging patients and the public in a meaningful and authentic way. Their nationally endorsed approach brought together 40 citizens – reflective of the North West London population – to deliberate how they expect their data to be accessed as part of health research. This has culminated in a set of clear recommendations that are now informing Hub policy, including strong support for an independent data access group to review all research requests against a robust set of control criteria.
Many of the Hubs’ PPIE teams have helped lay people to understand health data research and how it works, particularly by ensuring scientific summaries are now written in lay language. For example, Gut Reaction will only consider data access after their PPIE representatives have reviewed and understood the summary. This helps to bring health research into the mainstream, to build understanding, eliminate misconceptions and increase confidence in the process. This has also led to courses and workshops for PPIE teams to understand the use of health data. INSIGHT‘s Sense About Science public workshops explained their work with industry partners and openly explored concerns and addressed them.
NHS DigiTrials’ PPIE co-development panel supported the design and delivery of public engagement events, including events to listen to seldom heard communities’ and made practical recommendations for the Identification and Communications services. They have also made invaluable contributions to the development of commercial models, such as NHS DigiTrials’ PPIE co-development panel providing key insights on the developing pricing model, including views on the fairness of differential pricing for researchers from different sectors.
PPIE is crucial if health data research is to have the trust and confidence of patients and the public, and each Hub has seen the positive impacts of meaningfully involving patients and the public in their work.
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