Academia

Lessons learnt in the quest for meaningful and effective patient and public involvement

By Donna Littlewood 

Today I am giving a talk on Patient and Public involvement at the Suicide and Self-Harm Early and Mid-Career Researchers’ Forum (#EMCRF19) in Glasgow. This blog is the virtual version of that talk – but with links to relevant resources and a few added extras that I could not include in the director’s cut version of the presentation.

Involving patients, service-users, people with experiential knowledge has become increasingly common in health research. In the UK, the phrase Patient and Public involvement (PPI) is often used to refer to the involvement of people with relevant experiential knowledge in research. So when you see PPI in this blog- please read Patient and Public involvement and not Payment Protection Insurance.

First I want to start with this disclaimer – I do not profess to be an expert in PPI, nor do I claim to have all of the answers. What I can share are the things I have learnt through including people with experiential knowledge in my research in the past five years. This includes a little of the standard things you will find in any of the generic guidance and the things that no one really talks about in any great detail.So here goes, the 10 top things I have learnt about PPI:

#1. If in doubt ask people. I cannot stress this enough. More often than not, there is no strong evidence based guidance about the best ways to practically involve people with experiential knowledge in suicide and self-harm focused research. Here’s an example of the types of scenarios I am talking about –
You have budget for three people to review a lay summary of your research proposal – you contact the group to describe the task, the time-period it is expected to take, the payment rate and the deadline for the work. Ten people offer to review your proposal – How do you decide which three should review the task?
In one of our first group meetings we discussed the ways that people wanted to work as a group, and this was one of the topics we covered in that discussion. In this instance, the group decided we should draw names from a hat and leave it up to chance. Other groups have come up with different solutions, such as keeping a record of completed tasks and rotating the opportunities evenly across members wherever possible, or distributing tasks based on experience and skill-set. Other examples of group-led decisions are around supporting member’s well-being (#2) and providing feedback – both of which are covered separately in this list. Wherever possible, I would be flexible, and let the group lead decisions surround practices for involving the group.

#2. Supporting members’ well-being. Fellow ECR Isabela Troya has spoken about the importance of considering wellbeing during involvement – “Protection of well‐being for both PPI members and researchers, must come first when involving PPI in research, and thoughtful consideration, support, training and experience must be provided to ensure members’ well‐being.
However, general PPI guidance fails to outline how researchers can practically address this issue. At best, guidance acknowledges you should provide support, but fails to mention what that support should look like. This is something I have sought advice from other colleagues working in our field and mental health more broadly. Approaches range from having a clinically trained researcher or third sector support worker in attendance, taking contact details of healthcare providers and support networks, and developing individual safety plans, to establishing a group WhatsApp chat to offer peer-to-peer support. We discussed this with our group, and asked for their ideas and thoughts about the different approaches. They preferred the idea of developing a safety plan because this allowed us to take a more individualized approach to support. Some of the ideas which have worked well in other groups were dismissed as unsuitable by our group. For me, this is an important lesson, that when involving people in research we should try and include and empower them to make the decisions about the group processes. They have to fit the needs of that group.

#3.  Be truly open and honest. Sometimes I will get things wrong/ won’t know how to approach something/ may be unable to make changes to meet the groups preferences. Explain, apologise and own it.  For me, we will always be learning through our PPI work.

#4. Review group practices regularly. Some of the ways the group works together at the start of the project may not always work for the duration of their involvement.

#5. Two-way feedback. One of the most common methods of PPI is reviewing research proposals and documents. Members then provide you with feedback. The researcher reviews the feedback and most likely amend the document to incorporate most but not all of their suggestions. Then the researcher carriers on with their day and goes about their next task. Meanwhile, the PPI members are left wondering what happened. Providing feedback when you have changed things is relatively straightforward. But if you are somewhat of a ‘people pleaser’ like me, it can be harder to provide feedback at times when you don’t amend the study protocol or proposal. However, I recently came across some useful, research informed guidance on how to give feedback. As part of a training workshop on reviewing with our PPI group members, we followed this guidance by asking our members whether they wanted to receive feedback in instances where their comments were not used. The group decided they would like to receive this feedback, together with the reasons as to why their comments were not implemented, as it would help them develop their own reviewing skills and develop a better understanding of the research process.

#6. Training. PPI members are part of your research team, so think about supporting and nurturing their skills as you would any other researcher you were supervising. Although group members will have different skills and levels of experience, I would still advocate that you offer training to the whole group to cover the organisation of your research centre, current research projects and pictures of the research leads, an overview of the research process and examples of how they can be involved at each stage, and how to review research proposals and documents. We’re fortunate that our university also provides general courses for PPI members, but also look out for courses provided by local charity organisations that you can refer people too. In England, many NHS trusts run recovery colleges which can also be a useful source to signpost members to.

#7. Be aware of the tea break – it’s where the magic happens. During these causal conversations is when people often make seemingly throw-away comments that become some of the most important ideas and suggestions.

#8. Payment. I know funding is always a challenge (welcome to academia). However, personally I do not think it ethical to involve people on a purely voluntary basis. On the whole, we have the opportunity to be paid for our contribution to research, so why shouldn’t PPI members? Asking people to contribute on a voluntary basis because you have no funding to pay people may seem a practical and well-intended solution to ensure PPI in your research. In reality, it can devalue the contribution of people with experiential knowledge and make it harder to get funding. I have similar feelings about payment with vouchers- I have been challenged by HR colleagues on this, who did not understand why I needed to pay people when researcher Smith gives people vouchers. Strangely they didn’t seem as keen on vouchers when I suggested they be paid in them?!

#9. Evaluation of impact. The need to evaluate the impact of PPI has been debated. My personal view is that evaluation is important, because it can help us to understand how to involve people meaningfully, effectively and appropriately. Our research group is currently undertaking a mixed-methods longitudinal evaluation of the impact of PPI on the research, the researcher and the group members. The protocol for this study is currently under review and I will update with a link once it has been published.

#10. And finally, lots of quick fire, general logistic pointers which may seem obvious but are important. Deep breath here goes…Hold meetings at times and places based on members’ preference. Don’t try and cram too much in to a meeting – you will never get through it all. Send clear directions, including maps, photos of researchers and contact numbers. If the meeting room/building is a bit tricky to find, meet people somewhere easier close-by to then show them to the meeting room. Send out agendas ahead of time. Make processes for payment and reimbursement of travel expenses clear prior to the meeting. Send reminders for meetings. Give people as much notice as possible. Give people an idea of who will be in attendance (i.e., any external researchers) and how many people will be attending. The more information you can give people about what to expect, the less anxiety-provoking the meeting will be. Everyone loves an ice-breaker – NOT! Think carefully about whether people in the group are likely to respond well to an icebreaker. Give people name badges- trying to remember peoples name is an unnecessary distraction. Provide post-its/ notepads so that people can contribute in writing if they don’t feel comfortable speaking as part of a group. Provide a break-out/quiet space for people to use should they need time out from the session. Commit to providing regular updates – even if its ‘we’re still working through the ethics process for study a.’ Don’t forget to acknowledge and thank people for their contribution and always celebrate the groups successes.

Our members said…

Following my own #1 pointer, I invited our PPI group members to share their thoughts about how they want researchers to involve them in their work. Here you can find their responses.

Resources

Here are some resources I have found useful – this is by no means exhaustive:

  • INVOLVE are funded by the National Institute for Health Research to support active public involvement in NHS, public health and social care research. https://www.invo.org.uk/
  • Blog by Kristina Staley (analyst, writer and researcher) focused on all things patient and public involvement  https://kristinastaley.com/

Guidance documents

Journal papers

  • Practical advice on how to involve PPI members in qualitative analysis.  Jennings, H., Slade, M., Bates, P., Munday, E., & Toney, R. (2018). Best practice framework for Patient and Public Involvement (PPI) in collaborative data analysis of qualitative mental health research: methodology development and refinement. BMC psychiatry18(1), 213. Retrieved from https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-018-1794-8
  • Critical reflection on PPI as part of self-harm focused PhD project. Troya, M. (2019). Patient and Public Involvement and Engagement in a doctoral research project exploring self-harm in older adults. Health Expectations. Retrieved from https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.12917
  • Example of PPI in systematic review of self-harm in older adults. Troya, M. I., Babatunde, O., Polidano, K., Bartlam, B., McCloskey, E., Dikomitis, L., & Chew-Graham, C. A. (2019). Self-harm in older adults: systematic review. The British Journal of Psychiatry214(4), 186-200. Retrieved from https://doi.org/10.1192/bjp.2019.11
  •  Survey examining ECRs experiences and perceptions of PPI in mental health, self-harm and suicide research.  Wadman, R., Williams, A. J., Brown, K., & Nielsen, E. (2019). Supported and valued? A survey of early career researchers’ experiences and perceptions of youth and adult involvement in mental health, self-harm and suicide research. Research Involvement and Engagement5(1), 16. Retrieved from https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-019-0149-z

One last thing…

Lastly but most importantly, I just want to say a huge thank you to everyone who is using their personal experiences to benefit future research. Learning from your involvement enables me to be a more effective researcher. Thank you.


Photo DLDonna Littlewood (@donnalittlewood) has a PhD in psychology and is a Research Associate at the NIHR Greater Manchester Patient Safety Translational Research Centre, University of Manchester (donna.littlewood@manchester.ac.uk).

 

 

 

Featuring Photo by Antenna on UnsplashAntenna

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