Dr Claire Schwartz, ARC OxTV Programme and PPI Manager, shares her thoughts on the future of patient and public involvement.
“The purpose of thinking about the future is not to predict it, but to raise people's hopes.”
Predictions abound about the future following the COVID-19 pandemic, from the seemingly improbable to the downright impossible! It takes a very positive mind-set to picture the better world that is yet to come, but in the world of patient and public involvement, I think there is much to be excited about.
Digital platforms have been an essential tool during the pandemic to continue involvement work. This has thrown up some interesting challenges and opportunities. For example, we have been able to reach out to patients and the public regardless of where they live, where previously we might have been limited to a local area. This has helped us widen the range of people we speak to in a geographical sense, but has also enabled us to broaden our reach, making links with patients and the public who would normally struggle to attend physical meetings, such as those with mobility issues.
It hasn’t all been plain sailing, however!
Virtual involvement has limitations and can cause exclusion too. I had a lovely email from a gentleman with a lot of expertise to offer, who struggled to attend virtual meetings because he was hard of hearing. A “one size fits all” approach will not be sufficient to support everyone who wants to help shape our research. It is not simply a case of replacing other forms of contact with digital interaction because it is more convenient for us. In the future, public collaborators and researchers will need to tailor contact approaches to reflect the needs of the public and the range of people we engage with, which will require a bespoke, blended approach of digital and human connection.
Public awareness of science and medical research has been particularly high during the pandemic, as has a greater recognition of health inequalities. There is an opportunity to capitalise on this and increase access to involvement for underrepresented and underserved communities. One way this is happening is through more creative involvement techniques, such as using online forums, connecting through private Facebook groups and WhatsApp, as well as exploring different ways for public collaborators to express their views and ideas through artwork, poetry and written pieces.
More options for involvement allows a greater range of people to be heard. Informal approaches, such as a small group discussion with a researcher, or being able to leave comments online, provide a useful introduction to doing PPI work and, for some, will feel like a manageable starting point.
Trying to encompass all these approaches has meant that the terms for involvement have started to vary. We still have PPI (patient and public involvement) but we now also have simply PI (public involvement), PPIE (Patient and Public Involvement and Engagement), PE (Public Engagement) which is the term often used across Europe, PIE (Patient and Public Involvement, Engagement and Participation) which is now used by the National Institute of Health Research and CI (Community Involvement).
For public contributors the important distinction to make is the difference between involvement and participation. Participation is taking part in a research study but involvement is having an active, equal role in developing the research idea, the delivery of the research and sharing the research findings. Effective participation in a study cannot happen without appropriate partnership between public collaborators and researchers to ensure that its design and results are trusted and effective.
In the future, communication and collaboration are likely to be re-shaped and I hope that public collaborators will take a lead on this. However the principals and purpose for researchers to build partnerships with patients and the public remain the same. To ensure that the research we produce is acceptable, appropriate and relevant for those it is intended to benefit, patients and the public.
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23 July 2020
We asked PPI contributor Mary Zacaroli to let us know how the COVID-19 lockdown had affected her and the third sector and PPI work she does in her own words.