Today, meaningful public and patient involvement (PPI) in health research is a regulatory recommendation for many funders, and a key priority for us at the Academy. In the future, these recommendations may become a requirement, which we believe would benefit everyone. Prepare now, so you too can play a part in our vision of good health for all.
In October 2022, Lynn Laidlaw, a patient researcher and PPI contributor, and Dr Paul Wicks, Consultant on patient-centricity in clinical trials, spoke at an Academy event on the values and principles of public and patient involvement that they felt are non-negotiable.
With help from Lynn and Paul, we are sharing our top tips for Patient and Public Involvement (PPI):
- Take the time to build relationships and nurture them with open communication. Parachuting in and out after engaging with patients having extracted information from them is not a good look. Instead, consistently make time for conversation and collaboration to build a strong rapport. Though this may be challenging in the world of grant deadlines and busy academic and clinical lives, open and transparent relationships benefit research. Why? Because better decisions are made when patients and the public are involved from the start of projects, in all areas and at all levels of decision-making. For example, in clinical trials, better decisions can mean a significant return on investment. When done well, good relationships based on trust between researchers and patients can also improve recruitment and retention of participants in clinical trials.
The key to building strong relationships is clear and consistent communication. This cannot be said enough. Be honest and upfront about what involvement in your project will entail, including how participants will be renumerated. If you tuck away the renumeration details at the bottom of the information pack, you risk people choosing not to be involved for fear of out-of-pocket expenses. Give people feedback on their input and allow them the chance to feedback to you using user-friendly tools, keeping an open channel of communication throughout the process.
- Recognise that for people living with conditions, research is hope. Be attuned to the people you work with. Why are they invested in this project? What is important to them? It isn’t easy for someone living with ill-health to take out time for you, yet they do because it means something to them. Value their contribution, both their lived experiences as well as all the ideas they bring as whole individuals.
“For me, research is all about the feels and the emotions. I am involved because of my lived experience.” - Lynn Laidlaw, PPI contributor and patient researcher.
- Consider the emotional toll of PPI participation. The PPI process, while immensely rewarding, has the potential to cause harm to the people involved, especially when research projects are affected by setbacks or when relationships break down.
Co-production is an approach to working together in equal partnership and for equal benefit. It means that people with lived experience work alongside researchers, policymakers and healthcare professionals. When done well, they may even be involved in conceiving and co-designing the research study.
Patients and carers involved in research will be emotionally invested, and no one wants to see the research succeed more than them. It can be a difficult period for them when projects hit roadblocks, need to be stopped, or when the outcomes are different to what they had hoped for. At these times, sensitive and empathetic communication is vital. The same is true for research participants, who also require clear and direct communication.
Many research participants and public contributors hear the results of their projects, which can be unsuccessful, in the news – this is not how they should find out. Instead, processes should be designed to support those involved and to keep them updated in a way that is timely and comes directly from the research team.
Another important consideration is to involve public contributors in sign-off processes to ensure all decision-making includes them. They should also be made aware of what the next steps will be after their involvement has come to an end.
“Software designers would never make a piece of software without doing tons of “user testing” and yet for some reason, we fail to do that in making medicines all the time.” – Dr Paul Wicks, Consultant on patient-centricity in clinical trials
- Prioritise asking about and understanding the needs of the public contributors you involve. Be proactive in communicating the accommodations that can be made. Doing so will only improve their experience of working in research and with researchers.
Respect the public contributors’ time. Asking people to drive to an urban location and syncing calendars with several family members may make it impossible for them to be involved or indeed participate in research. Can you arrange home visits or telephone calls? Can you offer a taxi? Don’t forget to provide snacks and refreshments if you do ask them to travel. What may feel like small details can go a long way toward showing respect and appreciation.
Consider giving access to the research details and updates to make it easier for them to follow your progress. One way to do this is to publish on Preprint or OpenAccess platforms.
Try sharing your findings in ways that may be more accessible than academic papers, including as videos, infographics and patient-facing summaries.
Ask people how they would like to be referred to. There are many ways to describe PPI participants, including patients, experts by experience, or public contributors, and many people have strong views on which term is most appropriate for them.
Think about how patients would like to experience research. Why not design conferences that have patients at the heart? Invite patients and patient researchers to deliver talks. With permission, record them and make them available to the public.
- Recruit consciously. There is an acknowledged lack of diversity in patient and public involvement, and this has to change. Research cannot benefit all of society if the people involved are not truly representative of it. As researchers, we must be conscious of who does and does not typically become involved. We must seek to understand the barriers faced by people whose voices are not adequately heard in research. For example, it is simply not financially feasible for many patients to give their time without appropriate renumeration. We must take active steps to ensure that patients, from all backgrounds and communities are placed at the heart of research.
We are working towards a future where more people have a say in health and research. As part of this, we have expanded our commitment to meaningful patient and public involvement (PPI) and have made it central to our 10-year strategy.
Find out more about how we engage patients, the public and professionals.