Dec 03

How do you measure patient/carer involvement in HEI’s and what is success?

Personally, this blog post for me is part of an on going challenge as I try and embed a culture of involvement within a Healthcare education Faculty. How will I measure success and achievement? Do I use quantitative (numbers) or qualitative (words) measures? Using a hierarchy measurement such as the ladder of involvement is one way of measuring involvement success. This ladder, clearly heavily influenced by Arnsteins citizen participation ladder, was developed by Tew to enable a closer examination of how institutions were allowing true service user/carer involvement within mental health professionals education. Therefore higher-order involvement activities that go beyond the so-called ‘face to face’ patient/student session that may include recruitment, programme and module design and student assessment amongst others will be reflected in the higher steps of the ladder. A condensed version of the ladder is as follows:

Step 1:       No involvement

Step 2:       Limited involvement (“tell their story” sessions, etc)

Step 3:       Growing involvement (at least two of: Module/curriculum planning, stud selection, student assess, etc)

Step 4:       Collaboration(Full team members re step three, payment for teaching at full visiting lecture rates, etc

Step 5:       Partnership (All key decisions made jointly, PPI funding strategy, statement of values, etc).

See page 54 of this document for a beeter explanation of the ladder of involvement: http://www.mhhe.heacademy.ac.uk/silo/files/learning-from-experience-whole-guide.pdf

It would appear at first glance this ladder would be useful in allowing an institution to reflect on its growing involvement work. However, looks can be deceiving. For example, an institute could have a policy of including patients/carers within their recruitment activities for students and ‘claim’ they do this from the perspective of measuring themselves against the ladder of involvement (see steps 2 and 3). However, having a policy is one thing, frequency of achievement is another. I would argue that unless patients/carers were present on the majority of recruitment events it could not be claimed that this has been achieved from a ‘registering on the ladder’ perspective. This observation is valid in my view for all hierarchical measurement structures. Anyway, should we be solely using a quantitative (numbers) system of measuring involvement success? This blog is called the experts by experience blog and perhaps therein lies a possible solution. Why not use a qualitative (words) measurement approach to supplement use of the ladder and ask some ‘experts by experience’ who are involved within educational institutions if they truly feel involved?   Do they feel overawed and outnumbered by academics at meetings?  Do they feel listened to?  Do they feel they make a difference? These issues are crucial as institutions start to grapple with the issue of patient and public engagement and how we can measure their effectiveness to our student learning.  Ultimately, success is about ensuring that our students become better people centred practitioners who are prepared to listen to expert patients and facilitate empowering, collaborative relationships which encourages shared decision making and effective self management skills that will ultimately benefit everyone.  I will explore my thoughts as to how we measure the student experience of patient/carer involvement in education in a later blog.



  1. Bill Penson

    this is an interesting post and I think what is striking is how the Tew version is different to Arnstein’s in that the latter leads, at its pinnacle, to a fairly liberated self-governing position, which the Tew version cannot get to. In this respect the domains and hierarchy have already been set and so the possibility of being ‘user led’ or ‘user governed’, are unachieveable.
    If the goal is involvement then it works, but it shifts swiftly away from Arnstein. Would an alternative model be one of a shareholder? What it be worth measuring impact rather than involvement (although how that would be measured would need to be someone else’s contribution)?

  2. Bart Debyser


    With great interest l ‘ ve read the blog of Trevor and especially the last part of the blog: ‘success is about ensuring that our students become better people centred practitioners who are prepared to listen to expert patients and facilitate empowering, collaborative relationships which encourages shared decision making and effective self management skills that will ultimately benefit everyone’. That ‘s where it is all about and it ‘s great if we could measure the progress that has been made on this pathway.

    As researcher in Belgium (Flanders) and as MH nurse, l would like to measure the impact of user and carer involvement before and after a specific one week training program delivered to first year nursing students about ‘well being & mental health well being’. Half of this program is now delivered by patient experts. lt would be great to see what the impact of the contribution of the involved expert patients is on students perceptions of ‘patiënt as experts’. Being exposed to different patient narratives, does this help e.g. first year nursing students to work more in a collaborative and human manner with patients, clients? l also would like to know if there are sustainable (long lasting) effects on the (eventually) changed perspectives, etc. and if practical training for example reinforces (or maybe distort) the gained perspectives.

    l don’t know if anybody is familiar with validated questionnaires that match or fit with this research questions?

    Please let me know if you could help me further. l would be very grateful. l believe that by setting up this type of research we can put user and carer involvement in higher education more on the agenda in Belgium and user and carer involvment can make a further move and step forward on the ladder of involvement.

    Thanks so much,


  3. Sandy Walker (@walkerbroad)

    Furiously taking notes for the IPLU audit 🙂

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