Recently I’ve been following the progress of a new project called Doc Ready. The aim of the project is to develop ‘digital tools’ (eg. a mobile app) to support young people to talk to their GP about mental health issues (1). As well as sounding like a pretty neat idea in itself, the bit that’s really caught my eye is the focus on collaborative design of the Doc Ready tool. The developers are including young people, and GPs, at the early stages, to use their input to develop the tool itself. There’s a good summary of the ways they’re doing this here, for example through ‘persona work’ , which involves creating fictional characters with mental health problems and then imagining the challenges they face, to think about what issues need to be considered and keep these in mind when designing the final product. Workshops such as these make sure that the needs of the end user, in this case the patient, are focused on right from the beginning.
One of the things that interests me most about these kind of projects isn’t the end result though, but the way we try to get there. In technology and the design sciences, these kind of user development and early testing stages are very common, and viewed as essential for creating products or services that people will actually use.
Health researchers are also now cottoning on to the idea that if you want someone to use something, it’s a good idea to find out from them first hand what works and what doesn’t. In a standard trial, we might collect data during or at the end of the study period about peoples’ experiences of using a new intervention (for example, interviews with the clinicians about applying a new risk assessment, or a satisfaction survey after the trial to see how much patients liked using a new self help book). However, it’s less often the case that we will involve those patients or clinicians in actually designing the intervention beforehand, and very rare that this would happen formally. It’s not hard to imagine that this can create problems, particularly given the move toward to more ‘self managed’ interventions (broadly meaning treatments that require the patient themselves to perform behaviours, such as exercise, or monitor their condition, for example their weight or heart rate.) If it’s almost entirely down to the patient to ‘perform’ an intervention, then it’s especially important that the intervention is something that patients are willing and able to use.
Increasingly, health research is starting to include patients right at the beginning, to involve them in developing the intervention itself, rather than just asking them later on what they think about it. This can be as part of PPI (patient & public involvement in research), where for example a research team might ask a group of patients to critique their ideas and involve them in developing a new treatment. There are also innovative methods for capturing and using patient experiences to modify services, such as Experience Based Co-Design. (2)
In health research, we’ve adopted the term ‘health technology’ to describe almost any intervention that we employ to try to make a difference to health. It makes sense, then, to borrow from the fields of technology design to improve the treatments that we develop. I think one of the key lessons from those disciplines is the need to see the patient as an active user, who will use – or stop using – a treatment based on their experience of it. Recognising that experience, and collaborating with the user to engineer better experiences, can then help us to develop treatments that patients actually use outside of the trial or the GP consultation room. Those interventions best suited to the user’s need are most likely to be used in practice, and so stand the best chance of helping make a difference in the patient’s day to day life.
(We’ve been working on our own user-designed mental health technology project at Manchester, the AESOP project, funded by the NIHR School for Primary Care Research. You can find more details here and see a poster we made for project here.)
(1) The website states: “Our mission is to make something awesome that supports young people to feel more confident about their GP appointments by helping them to: know what to expect from a GP visit, get ready for it and make a note of what happened at the end.” I think more research projects should embrace ‘making something awesome’ as a goal!
(2) There can be debate about the point at which PPI and participatory or collaborative research methods merge into the same thing. I tend to be conservative and consider PPI to be explicitly a case of patient’s being involved as collaborators and not as participants, while something like EBCD would be a research method rather than example of PPI, as the patients are still treated as ‘participants’ and their views analysed as ‘data’. I can see why people get annoyed that they’re carved up separately when in practice it may not be black and white, but I think it’s important that researchers learn to think of PPI as explicitly a case of collaboration, with patients as equal partners, rather than just as a more collaborative or patient-led type of qualitative research. The PRIMER site has more info about PPI and how it’s done.