PPI for Health Services Research
PPI for health services research:What would real partnership working look like?
Patient and Public Involvement and Engagement means “getting actively involved in the research process itself rather than being the participants or subjects of the research”. Similarly NHS England “believes that by listening to people who use and care about services, it can understand their diverse health needs better, and focus on and respond to what matters to them.”
Health research provides the evidence base for decisions about our health care and services and few disagree with the desire to have active PPI in this research. Sadly PPI is often be relegated to being “just another thing on the form” for a research bid. Sometimes these sections can read and seem like an afterthought, and I confess that often I find they are the bits I leave to the last minute.
It is not meant to be like this. We need patients and the public to be actively involved from the start of our projects. They should have a voice in generating research questions. We want them to feed into the research design and conduct of research. And they will be vital to our dissemination and spread of our findings. Unfortunately the timescales for preparing research bids are increasingly compressed so that often a research proposal has progressed considerably before patients and public are invited to be involved, and without funding many researchers cannot reimburse people for their input.
When patients or the public contribute to research this can sometimes feel like tokenism – a single patient gets asked to represent everyone with a condition or using a service. We call on reps allied with lobby groups and charities, who may have strong views and a desire to voice concerns, but we need to remember that activists and formal groups may not always represent the views of the ‘silent majority’.
So, what does genuine patient, user, family and public involvement in services and research look like?
NHS England Patient and public participation policy provides guidance about best practice. While this available on the web it is a 16 page document and – dare I say it – it looks a little off putting. (The first 3 pages are disclaimers and official material). If you read as far as page 7 there are 10 recommendations for PPI. For a recent conference, I decided to see if I could simplify this list for PPI in Health Services Research (HSR).
1. Ask. Often researchers seem reticent about asking the public to help with research. We need to get out and about and have conversations – in health and social care settings, but maybe in cafes, or libraries or bus stops as well to find people who can help us. A business card with a contact number and a request “Can you help with my project about urgent care?” can be a useful prompt.
2. Find difference. I’m White and over 50. There’s a danger that I will ask lots of other White fifty-somethings to help. We need diversity and that means thinking harder about including people of different ages, races and genders. We also need to avoid only selecting the well and the rich. I have been working with a fantastic PPI group at Solent NHS Trust some of whom have aphasia (an impairment of language often after a brain injury /stroke or dementia). They have taught me a lot about how I can work with them, support them, and importantly that we can laugh together about the problems caused by forgetting words.
3. Have good conversations. Don’t tell everyone but there are some boring bits in research. Long management or steering group meetings where only the researchers talk are not ideal. We need spaces where researchers talk less and listen more. We also need to be honest – and sometimes that means being prepared to challenge views – our own and those of everyone on the team if need be.
4. JTA (Junk the Acronyms). We need to be careful not to use jargon and words that lock people out of our conversations. At the very least we need to give our PPI (a three letter acronym of its own) permission to ask what we mean. (The Mental Elf introduced me to the green card scheme whereby participants in meetings hold up a card when they need an explanation. This can work really well in some settings.)
5. Time is precious. We need to use PPI time well and reimburse them appropriately.
6. Develop skills. PPI representatives may need to learn about HSR methods. They might want to chair a research meeting. Or develop some dissemination materials. We can support this, and in turn we can learn from patients and families.
7. Last but not least, we need to make space to laugh and have fun. PPI representatives are volunteers (even if we pay their expenses) and they are unlikely to stay long if we don't build positive teams and enjoy the work.
If you are a patient or member of the public who wants to get more involved in research your Clinical Research Network can put you in touch with researchers looking for your input. And if you are a health services researcher wanting to improve how you do PPI ask your CRN how they can help.
An earlier version of this blog was presented as a keynote at the Solent Research and Improvement conference 2018. I am grateful to the Side By Side patient and public representative group and the participants at the conference for helping me think about how to improve PPI in my research.
