“We’re all patients”: Brief reflections on the Patient Hack Day

Last Wednesday we ran the first Patient Hack Day here in Manchester. The idea behind the day was to borrow (steal) the NHS Hack Day format, which brings together tech geeks and clinicians to ‘hack’ solutions health problems, and apply it to Patient and Public Involvement (PPI), which also aims to bring together two types of expert – experts-by-experience and researchers. Simply put, the aim was to get researchers and PPI partners working together to hack into health research. Six amazing PPI partners pitched their ideas for a research project, and then we formed people into mixed teams to collaborate on turning an idea into a research proposal.

Immortalised in ink at last...from the visual minutes by More Than Minutes (@visualminutes)

Immortalised in ink at last…from the visual minutes by More Than Minutes

There will be a full evaluation of the day, and we’ll also be putting up pictures and comments on the PRIMER website, but I just wanted to reflect on one particular aspect that came up. We noticed quite early on that people were sharing a lot of personal experiences when they were working on the research proposals – and this included some of the researchers, who talked about their own experiences in services or the experiences of loved ones.  Talking to one of my research colleagues at the end of the day, he observed that there was “a lovely moment” in his team when the researchers and PPI partners realised they were actually on the same side of things – that everybody there was a patient in some sense and wanted to make care better.

I hadn’t been expecting this particularly – I’d been more interested in the idea of recognising patients & service users as potential experts in research, rather than recognising researchers as patients – but I’m very happy about it, as it seems it can help achieve the same goal, of encouraging genuine and meaningful collaboration. I wonder if it was something to do with taking the process out of the University and into a setting where we tried very hard from the start to set up researchers and PPI members as equals, so even the researchers felt more able to step out of their professional role and react more personally. Or it might have been inspired by the pitchers, who spoke so elqouently about the need for research into their topic area but were also candid and personal about what it meant to them.

In the afternoon we talked about issues in PPI itself – specifically, how to encourage diversity in PPI and get beyond ‘the usual suspects‘, how to support people who get involved and and be aware of the impact on them (with one PPI partner memorably describing PPI as “giving a piece of yourself”, and reminding us that we are asking these ‘experts by experience’ to share experiences that may well be painful or frightening.) Again, personally I felt there was a real sense of realising we’re on the same page – that the issues that aggravated the PPI partners were the same as those that troubled the researchers and vice versa.

The Hack Day format was about drawing a parallel between PPI and the NHS Hack Days where tech specialists meet clinicial specialists, and so was about bringing together two different ‘specialist’ groups to get the best out of their different skills and experiences. I think some of this was definitely in evidence, but there was an unexpected bonus of also discovering that we’re maybe not so different after all.

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