Oct 05

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:Ā ‘ Involvement only means wheeling inĀ 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 ofĀ  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 rareĀ 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 believeĀ Patient/carer involvement in all healthcare education is crucial for many reasons (too many for this blog entry!). However,Ā if we are to helpĀ avoid situations such as the midĀ 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!)


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  1. James Wilson

    I believe Patient/carer involvement in all healthcare education is crucial for many reasons (too many for this blog entry!)
    – could this possibly be your next entry?

    Really interesting reading.

    1. Trevor Kettle

      Thanks for your comments James. My next challenge is to bring a group of students to connect with a patient purely online using Google hangouts.

  2. Anya

    Trevor – a brilliant blog! Very useful and cuts straight to the point with the myths! I wonder if your next post could be about the myths from the perspective of the students or people with the lived experience… Could make a great series!
    Keep up the great blogs!

  3. Sandy Walker (@walkerbroad)

    That sort of bias is pretty healthy if you ask me!

    I wonder if the powers that be realised that meaningful patient/carer involvement is a much bigger subject than originally envisaged at the time of the creation of the ‘person centered’ phenomena (one which I wholeheartedly support) in policy, was the rhetoric really thought out in terms of implications for service delivery?

  4. mr k watson

    Health care is about people who have a “normal” life and because of illness or injury find they are in an “abnormal” life situation and care is about the gap between the two. How can we address that gap and take it back to “normal” as far as possible. To quote Dr Ed. Mitchell, we are not working towards avoiding an unpleasant death but to avoiding an unpleasant life.

    1. Trevor Kettle

      Thanks for your comment Mr. Watson. For me the challenge is how we address the care gap by taking the patients expert experience of care to help mould the next generation of healthcare professionals.

  5. James Kayle

    Being a part of Healthcare Education India I thoroughly enjoyed reading the entire blog along with the comments shared by various people. Trevor – you did a great job….! Hey I liked Mr. Watson’s statement “we are not working towards avoiding an unpleasant death but to avoiding an unpleasant life” and to it I would also like to add that “Once we start taking care about avoiding an unpleasant life this will automatically contribute (to quite some extent) to avoid an unpleasant death.

  6. Jason Brien

    According to me Health care education is very much needful amongst us and I think that this geneation is so much lucky to have several institutes for the same. If we do have best tv journalism institute delhi then we also have numerous institutes and colleges where one can have best health care education or training to successful career and also to motivate others.

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