A public conversation via social media created a shared space for talking about research, helping people connect and share knowledge and ideas.
By Derek Stewart, Public Partner at Vocal
When I had throat cancer in 1995, very few people took part in research studies. After having successful treatment, I became part of a patient community at the National Cancer Research Institute and chaired its first patient group. I was interested in how patients and researchers could work better together. I wasn’t there with complaints about my care as seemed to be expected.
Involving public voices
It was while working for researchers on Creutzfeldt-Jakob disease, with Independent Patient and Public Involvement (PPI) consultant Bec Hanley, that I used social media as a means of reaching out. I wanted to find out what else was going on in the landscape of non-clinical research and PPI.
These researchers had an excellent relationship with the carers and the family members of those affected by the disease but saw PPI as something different. I began to wonder if that might be similar for others doing lab-based science.
Activities we ran
We realised that we didn’t have many good examples of PPI working in non-clinical research. So, in 2018 I went on Twitter, now known as ‘X’. Using my own account @DerekCStewart I asked:
Who’s doing any involvement? What are you doing and how is it going?
People came forward and were generous with telling us what they were doing.
Over 25 people joined in the chat: researchers, patients, public partners and people doing PPI. There was clearly interest and a community of people who wanted to share ideas and talk together about what they were doing to engage and actively involve the public in the landscape before clinical research.
Bringing people with different lived experiences together helps shape research that can benefit all.
Credit: Jill Jennings for Vocal
In March 2022 I ran another public discussion on Twitter, or ‘Tweetchat’. I did this whilst working with Vocal, an independent organisation commissioned by the Medical Research Council to undertake a review of public involvement in research, with a specific focus on non-clinical health and biomedical research.
Eighty-five contributors took part in the chat, with almost 400 tweets in total and around 35 people active in chat and adding comments. Participants were mainly from the UK, Ireland and Canada. Many were patient advocates and some were public involvement leads from health services and research, including people working in industry. There was a mix of people who often comment on the subject of public involvement on Twitter, as well as some new people.
The three questions asked were:
Why, what, and how do we actively involve patients and the public in the research landscape before, beside and beyond the clinical experience?
We ran the event for an hour and I posted the questions as a card on my Twitter page. We asked people to use the hashtag, to tell us which question they were answering, to be polite and to include links so we could gather examples of people’s work.
At the end we thanked everyone, and I wrote up a summary of the Tweetchat in a blog post. Tweetchat comments from the ‘why’ question (see ‘Appendix 3: tweetchat #Involvement_Preclinical’) are included in the public involvement review. All comments and content related to the Tweetchat remain on Twitter, search for #Involvement_Preclinical.
It was interesting to note that some scientific researchers mentioned that they themselves had experience of the condition they were studying and that it formed a driver for their research.
The impact of public involvement
Too often patient and public involvement is seen as a one-way transaction, for example commenting on a proposal or reviewing a leaflet. Having a two-way dialogue via a public conversation can lead to mutual learning and mutual benefit.
It’s not just how does the research benefit, but how do I benefit as the ‘patient’ and how does a researcher benefit? Because if it’s just driven by how to make the research protocol better, then it could stop there. What you want is for the researcher and their work to benefit from having that conversation, as ultimately this can improve the impact of the study on someone’s health.
The discussions reinforced to me the need for a cooperative approach and that this is about cultural change. Because fundamentally, it’s about changing researchers’ perceptions and encouraging them to have conversations with people about their work.
Lessons learned
First listen and learn
There are communities you can join before running your own public discussion. There are groups like #WhyWeDoResearch, who are regularly holding discussions, and there are patient communities. First listen and learn, before asking a question that you’d like answered.
The importance of a shared space
The Tweetchat created a shared space for conversation, external to the clinical and laboratory work. We need a shared space with some rules of engagement, otherwise the power imbalance is huge.
Get advice on explaining your research
It’s in your interest to get advice on explaining what you do, because the better you can explain it, the more likely you are to have a good discussion. It could even increase your chance of getting funding, as the funding reviewers won’t necessarily be experts in, for example, the detailed molecular aspects of your work.
Be clear what you want to learn about
Researchers should help patients and members of the public understand how their life experience can help. You should be clear what it is you want to have the conversation about. Do you want people’s opinion on the work you’re doing? Are you looking for insights of what the patient experience is like? Are you looking for advice on a patient information leaflet? It may be one or all, but they are different questions.
Don’t try and control the chat
The chat host should allow the chat to happen organically and not try and control it. Find a search engine that allows you to capture all the tweets so you can go through them afterwards.
Work with a team
Get others to help you and run the discussion as a team. One person could host the chat with the support of two or three others who post the questions, monitor the responses and make the links and connections. I also like to do a blog that runs parallel to the Tweetchat with sources and links which can help answer people’s questions.
Feedback to the community
Remember that you’ve created a community and that going back to them is important, because you’ve set up a relationship with people. In methodological and non-clinical research sometimes that takes longer than you imagine, but you shouldn’t forget those people.
Last updated: 12 April 2024