What kind of an expert are you? Patients as Hackers in Health Research

Hacker (n)

  1. Someone who makes innovative customisations or modifications to standard equipment or tools.
  2. Someone who combines playfulness and exploration in performed activities.
  3. Someone who circumvents the established systems of protected organisations.1

We were delighted to hear last week that our idea for a Patient Hack day has been funded by the Faculty of Medical and Human Sciences at Manchester (as part of the ‘Fostering and encouraging transformative research’ ESRC fund). The idea is simply to borrow the concept of the Health Hack days that have been run across the country (such as the North West Health hack or the BMJ Health Hack) but instead of health professionals working with programmers to ‘hack’ solutions to problems in health care, we’re giving it a PPI twist: framing it as researchers working with patients to hack solutions to health research problems. The Health Hack days seemed to promote a real melting pot atmosphere, and a mutual appreciation of the different areas of the knowledge the participants bring, as well as being a rapid and perhaps more creative way of tackling problems. The idea of trying to create this for a PPI activity was too good to resist.

Another motivation for the Patient Hack was hearing from PPI partners about how often traditional PPI activities want to frame them as ‘just’ a patient. Researchers can seem to want them only to bring experiential knowledge of their illness or treatment, but not to have any opinions or comments on anything else. Considering PPI is meant to be an empowering experience, this seems contradictory. A patient is obviously more than a patient – they might have a job, a hobby, a background, a passion which is very relevant, but researchers want them to turn those bits off because really they just want someone to nod and say “well as someone with Disease X yes I think your study of Disease X sounds delightful.” (Mark Brown, editor of One in Four, has termed this “being beneficiaried”, although looking at this from the angle of a professional who then ‘comes out’ as a service user – I think the same forces are at work though). The patient is there to be a patient, and receive the help of the professionals (in PPI, we’re ‘helping’ them to ‘contribute to research’. Again, you might struggle to see the empowering bit here…) so when they bring up their own professional or personal expertise, it can get relegated away.

The idea with the Hack Day is that the method will encourage and perhaps even depend on patients bringing their full set of skills and interests to play. The researchers will present the problems, but the patients will be asked to draw not only on their personal experience but also their personal expertise to come up with solutions. In my own PPI collaborations, I’ve worked with patients who were also (in no particular order) a social worker, a head teacher, a website designer, an event organiser, a community support worker and a semi-professional comedian. The idea is to bring all these capabilities into the melting pot to see what novel solutions to research problems might appear.

What kind of expert are you anyway?

The Health Hack days I mentioned above are about bringing contextual experts together with technical experts. This means bringing health professionals, with knowledge of the everyday problems of the reality of health care, together with the technical specialists, the hackers, who suggest novel technological solutions. When we were putting the grant together, I realised that in most PPI work the patients are framed as the contextual experts and the researchers are framed as the technical experts. The patients have the everyday experience of living with Disease X, while the researchers are the specialists who know what methodologies are available that might  solve those everyday problems. The Hack Day turns this around -and  I think it’s quite interesting to look at PPI this way.

Firstly, I’ll admit that the Hack Day is more appealing to me as a researcher. Traditional PPI, with the researchers as technical experts, frames us as methodological toolboxes, with no broader understanding of the important issues in health care. There’s an implicit, sometimes explicit, narrative in PPI that says that researchers are devoid of any compassion or insight, and would just be off researching what colour laces your GP should have in their shoes if it weren’t for PPI telling them about the really important problems.  I’ll admit I find this kind of insulting. It seems to ignore all the work and effort researchers put it in to understand the problems in health care today. By contrast, the Hack Day framing does acknowledge this, because we researchers become the contextual experts. In our case, we understand the broader context of health care, the policy drivers, the local and national core problems, using our knowledge of the existing evidence base to identify areas of need. This narrative I can get on board with 🙂

More importantly, I think it works better for patients to frame them as the specialists. I think on face value, it seems like researchers should be the specialists, because they have the formal expertise, but I think this focuses too much on the specific skills of research rather than on the types of knowledge and perspective that are brought – and personally I think PPI is more concerned with the latter. So in this Hack Day model, researchers bring their broader contextual perspective, but patients bring their own specialist perspective. This rings true to me, that each patient who becomes involved in PPI brings their own specific and special insight and interests, and that they’re seeking to modify and customise the broader research agenda to better fit them.

I also realised this way of framing PPI gets around some of the commonly reported problems, such as the idea that patients should be representative of a population if they’re to take part. In the Hack Day frame, this would be nonsense, as each patient inevitably is a specialist, with a specific interest (similarly, this way of framing gets around the often reported fear of the “single issue” PPI partner). Framing patients as the non-specialists in health research seems to have brought with it a raft of assumptions about how they must be ‘naïve’ to the processes of research, or they no longer represent the views of ‘real’ patients. This has always seemed fishy to me, and I like that the Hack Day framework gives me a way of showing why – the Hack Day doesn’t require patients to represent anyone, and it doesn’t depend on their knowledge being generic or naïve – quite the opposite. By contrast, researchers in this framework are expected to be able to represent their group…

It also doesn’t struggle with the so-called ‘expert PPI’ partner. In this framework, this just means a patient who now shares some of the contextual knowledge that researchers have. This makes them very very valuable, rather than making this into a problem because we have the notion that they must be research naïve if they’re going to contribute.

Innovate or Integrate? Disruption Vs. Normalisation

This way of looking at patients and researchers in PPI also helps me understand the different goals they have. I’ve noticed in the Patient Leader commentaries online that there is a big focus on disruption, whereas in the research literature we tend to focus on integration, and there’s even a model we use that focuses on normalisation. These can seem to be at cross purposes – patients want to mess things up, researchers want to smooth things down. But in the Hack Day framing, again this makes sense – the patients are hackers! They’re there to disrupt and to innovate! By contrast, researchers are there to provide context, to look at the bigger picture, to integrate and synthesise. I think this make it clear why there could be conflict between researchers and patients at times, and I think making it more explicit why and how this happens would be helpful to both parties. It’s also clear though why both perspectives are necessary, and why combining the two could have the most powerful impact. The patient hackers create novelty and innovation, which the researchers can help translate and integrate into existing patterns of research or care. Again, this just feels more accurate to me, more like the actual conversations and projects in PPI that I’ve worked on.

Of course, the Hack Day is an experiment, and as I said recently, a lot of experiments in health research are about finding out things fail, so I’m well aware the idea might not be a success. The point though is to learn as much as we can while we’re doing it, so a big part of the Hack Day project will be about evaluating its impact, on both researchers and patients. I’m also really interested to present this different model of viewing PPI to existing PPI partners, to see if it rings true with them, or if they foresee problems in viewing patients this way, or disagree with my assessment of researchers as the contextual experts. As always I’d love to know what you think, so do please either comment below or catch me on twitter.

Notes:

  1. This definition of hacker is, I’ll admit, partly hacked, ie. Customised to meet my specific needs – but largely from here.
  2. Huge thanks to my collaborators Claire Planner, Ailsa Donnelly, John Baker and Bella Starling. Also thank you to ClaireOT for her advice on the idea via twitter!
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5 Responses to What kind of an expert are you? Patients as Hackers in Health Research

  1. Claire says:

    I’m so pleased you’ve taken this idea forward and got it funded so that we can see if it works!

    In my experience of running the Digital Health Conference and Hack (see digihealthcon.wordpress.com) the assets represented by patients, service users and carers were really valuable. Some of the best “hacks” that were produced relied heavily on their specialist insights and lived experiences, so I’m really excited to see if this applies equally well in terms of PPI in research as it does in “systems hacking”, as we tried to do.

    I love that you’ve picked up on the different paradigm and techniques that researchers and health professionals seem to share (evolution, building on the evidence base) versus the “patient leader” paradigm: directly challenging these assumptions with ideas around disruptive innovation.

    I’m not sure how much of the health and care sector have realised what fundamental shifts are represented by ideas like peer-to-peer knowledge transfer, the expert/empowered/e-patient and shared decision making, and also in the valuing of the different (but equal) skills that patients, service users and carers want to bring to health and care.

    Brava, Sarah! Now, where do I sign up? 😉

    • Thanks so much Claire!
      I’m definitely intrigued to see if this kind of model for PPI can be a way to make better use of the assets that different participants bring. I’m tentatively optimistic that the paradigm clash could have positive outputs as well!

  2. bikermondo says:

    It does sound very ambitious and an interesting approach. However being frank and honest as a patient I’m skeptical. Hacking does not generally result in scaleable solutions or even in particularly useful ones most of the time. It also has clear and measurable objectives and success criteria which are implicit in the day itself – evidence of success is often demonstrable at the event. I’m not sure where the patient fits in after the hack day – are they a participant in shaping the outcomes after that day or more of a catalyst? (i.e an agent that is necessary for the change to occur but not part of the main process taking place). There is also the question of transforming the transformation – how does any hackathon outcome move to being more widely adopted? There are also the obvious constraints of time and resources that needs to be factored in. Both as constraints on the outcomes within any day and any hack. Plus there are the issues of whether leadership and guidance fit in, whether parallel solutions can be operated and what failure rates are acceptable (and what does failure look like) – the prism through which successful hacks are viewed can be quite distorting.

    Please do not view this criticism as being just for the sake of it but simply there to provide input so that these hurdles can be seen and successfully planned for and cleared in what sounds like a very interesting project. Whilst I may be skeptical on one level I don’t believe any of my points are insurmountable and I do want your ideas to promote improvements. You are obviously very pationate about improving healthcare, clinical outcomes and investigating alternative research models. I hope your work does lead to discoveries and improvements and I wish you the very best success!

    • Hi,

      I think you’re absolutely right to be sceptical, and thank you for all the points you raise. At the moment, the Hack Day is really a pilot study to see if this way of bringing together patients and researchers is possible, and then to evaluate whether it can be fun and productive. The outcomes on the day would be broader ideas about possible projects which we hope will be taken forward, but I think your point about how/to what extent we support this afterwards, leadership etc are really vital issues and something we’ll need to start thinking about. It’s an excellent point about considering whether patients will continue to take part or act as catalysts on the day – at the moment, I suspect that will be up to the patients themselves, but clearly we need to plan in advance how to support them with those decisions and have plans of action for further involvement. I’d be absoutely delighted if people came away from the day wanting to do more PPI, and so making sure the routes for this are clear will be vital. I think it’s clear to me that getting a deeper understanding of these hackathons, and what works and what doesn’t, will be an important next step in our preparations.

      Thanks again for your comment – the criticisms raised are certainly valid and very, very helpful. . As they say, ‘truth springs from argument amongst friends’!

      Sarah

  3. Pingback: “We’re all patients”: Brief reflections on the Patient Hack Day | saraheknowles

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