What actually IS patient/carer involvement in healthcare education: ‘exploding the myths’.

I am still asked frquently by my academic colleagues to define exactly what is patient/service user/carer involvement in the education of our healthcare professionals. To answer this question i feel I need to turn it around and actually talk about what it isnt. So here is my myth-busting list of what involvement isn’t!

1. Myth 1: ‘ Involvement only means wheeling in an ‘expert by experience’ in front of a bunch of students’. Whilst face to face sessions can obviously be valuable in exposing students to the lived experience of  dealing with a condition on a daily basis, there are serious pitfalls that you can fall into with only using this approach as an academic. One is the accusation of tokenism. The ‘ladder of involvement’ (http://www.mhhe.heacademy.ac.uk/silo/files/learning-from-experience-whole-guide.pdf) puts this on the lowest rung but one if its the only involvement activity an institution supports. Face to face sessions, albeit having a place in exposing the lived experience to students, is very close to when patients were traditionally used by doctors to be ‘talking illnesses’ to be prodded (mostly metaphorically!) by an audience of medics to enhance understanding of specific, often rare illnesses. Clearly there are many successful ways of exposing healthcare students to the lived experience as well as face to face sessions. These include: podcast interviews (audio & video), Skype sessions, online forums and written testimonies, apart from more strategic involvement, including recruitment, assessment and even employing service user academics.
2. Myth 2: ‘One-off focus group events can tick the involvement box’. I’ve tried one-off focus group events in the past. Essentially, you invite a group of patients/service users/carers from a multitude of backgrounds to a meeting and ask them to discuss specific questions/subjects on opinions that you want to elicit from them. There is nothing wrong in principle with this activity, indeed rich information can be gleaned from such gatherings. However, IMHO, successful involvement is about the institution being able to nurture relationships with a group of individuals and indeed organisations that represent differing groups, over a period of time. This can develop trust and engender a real partnership between all stakeholders that can achieve real change.
3. Myth 3: ‘Involvement learning events can be slotted in where we can find a space, its not that important’. Ok, this is where I will admit to some bias. I believe Patient/carer involvement in all healthcare education is crucial for many reasons (too many for this blog entry!). However, if we are to help avoid situations such as the mid Staffs disaster not to reoccur, any module in a healthcare education curriculum should contain some student exposure to the lived experience (as argued previously, its not just about face to face sessions!) unless you can specifically justify why not to include it.

This has only really been a snapshot view of exploring the myths of involvement. I believe this is a movement that will only increase in importance regarding the education of healthcare professionals. Remember, the patient should be at the centre or ALL we do in healthcare (and healthcare education!)