Let’s start from the beginning, what do we mean by engagement and involvement?
I’ll start off by saying that whilst they are each different in their approach, it’s really important that we incorporate both into our work as they independently add a lot of value, just in different ways. Engagement will help develop the public’s understanding and has the potential to create ambassadors for our work. Involvement will take it a step further and ensure the insights, needs and experiences of patients, carers and the public are embedded into our work.
For me, it’s all about building true partnerships and working together with all of the different people who have a vested interest and that includes patients and the public.
Why do you think it’s so important?
Public trust and transparency! The world of health data is complex and given how its use can make such a difference to healthcare and research, it’s so important that the right teams are able to use it in the right way. However, the nature of the topic does make it a sensitive issue (and understandably so!) and so we have a role to play to acknowledge concerns, help build understanding and involve patients and the public in how we are enabling responsible access to health data for research.
Are there any real-life examples of how it’s made an impact?
Of course! A few examples come to mind, but I think a key one is how HDR UK has involved patients and public in the design of the programme to build a UK-wide infrastructure for health data research. This has had huge benefits in guiding the criteria for the newly-formed Health Data Research Hubs in involving patients and the public in making decisions about how data should be used. Another example is how we’re working with patients, the public and other key stakeholders in the drafting of our new PPIE strategy. As well as developing the first draft with our Public Advisory Board, we held a workshop with around 50 attendees – including patients, carers and colleagues – who shared their thoughts on what should be included. I think what’s most exciting about this was that it really was a collaborative effort and it is informing our approach – we plan to publish our strategy soon.
So, what are the exciting plans for PPIE at HDR UK?
I’ve come in at a key time where PPIE is developing across the organisation and as the PPIE strategy gets ready to launch there are plenty of things coming up over the next year that I’m excited to get working on.
For example, we’ll be working with patients, public and other key stakeholders to create a:
- PPIE community within HDR UK to share learnings and insights and offer training, resources and support as needed
- Public facing section of the website and develop it in a way where you can ask questions, share feedback and get involved
- Set of focused priority areas and use innovative patient and public involvement techniques to help us move forward with areas of work that are, at the moment, complex and unclear for the heath data sector
How do I find out more information and get involved?
If you’re a patient, carer or member of the public, you may want to get involved with our Public Advisory Board – we’re currently recruiting and would be great to have you on board.
If you’re a researcher or healthcare professional working in health data and are interested in involving patients and the public in your work, get in touch. We’d be really interested in finding out more about your project and what we can do to support you with your PPIE plans.
This is very much an open and ongoing conversation so if you have any insights or thoughts you’d like to share, please do get in touch as we’d love to hear from you! I really do believe that to achieve our goals at HDR UK, and the wider health data sector, we need to work as one unit and will be stronger together.
Author: Sinduja Manohar, Public Engagement and Involvement Officer, HDR UK
Our Public Advisory Board
Health Data Research UK's Public Advisory Board provides advice on the delivery of our mission, principles and future strategy, with particular emphasis on ensuring that health data is used...
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New public dialogue finds people want more proactive transparency about how their data is used in research
5 May 2022
DARE UK (Data and Analytics Research Environments UK) has published the findings of a UK-wide public dialogue exploring attitudes towards how sensitive data is handled and used in research.