The Experts by Experience Blog

This is an important topic which requires a serious debate, not something I can do justice to in a short blog! However, I feel there are some issues I think are worth highlighting. We all recognise now that patient and public involvement (PPI) is important in all levels of healthcare services, research and education. However, exploring the higher level impact of PPI within strategic decision making within higher healthcare education is clearly a useful exercise that may tell us much about the effect that patients may be having on the way academics view patient involvement on the education of healthcare students. How to do this? Clearly experimental research designs such as randomised control trials (RCT’s) will not  be suitable as we are dealing with often complex cultural factors between academics who are highly academically qualified interacting with individuals who may not be ‘qualified’ in the same way but have empowered themselves with their own expert knowledge base of their own lived experience and have been able to network with other equally articulate expert patients to develop into what is now being acknowledged as a ‘patient leader’. People such as Michael Seres (http://www.michaelseres.com/) Anya DeIong (thepatientpatient2011.blogspot.co.uk) and Alison Cameron (http://www.kingsfund.org.uk/about-us/whos-who/alison-cameron) are inspirational examples of what patients can achieve when health services, research and higher education take patient involvement seriously. Combine their contributions with innovative use of technology (eg ‘Skyping’ a patient into a lecture room when distance or other reasons prevent them from attending in person) and social media (Eg using Twitter to facilitate student  exposure to patient tweets/tweet chats) can only help to break down barriers that may remain regarding patients making a firm contribution to healthcare student learning in particular. How do we judge however the contribution, if any, that patient leaders such as those mentioned are actually having of the education of our students? Does involvement such as I describe above and  also planning of new programs, student recruitment and programme validation change the way some academics view the contribution of patients to ‘their’ students education? What effect would this have on the academics future thinking re PPI?

I suggest that using an ethnographic approach  would be one way of observing and describing this impact on academic culture. This method would enable a long-term ‘view’ of this ‘culture clash’ (probably NOT the correct phrase!) and enable this to be put into some kind of context and  perhaps a map out a future direction of research travel in terms of PPI impact and how we ‘measure’ this within healthcare education. Future blogs will explore this subject in further detail

Any views/opinions on the above most welcome.

Trevor

It’s high time for reflection and review. I have been leading the Experts by Experience group for a year now (with some brilliant colleagues!) and it’s high time I took a look at what the group has and hasn’t achieved over the last year and what it perhaps could achieve over the next year.

So, firstly, why a group in the first place?  I think the biggest reason is that previously the Faculty had a policy of running the good old one-off ‘focus group’ event when consulting with patients/service users. Whilst its very easy to claim ‘consultation’ with patients, it becomes very difficult to audit exactly what you did as a consequence of the consultation. Its almost as if changes were made because of ‘osmosis’!  You can keep repeating the focus groups but it is difficult to achieve continuity and usually no attempt is made to consult people between focus groups. These events quickly therefore become ‘snapshots’ of views and lack flexibility and insight created by ongoing relationships.  Impact on academics that were involved however appeared very positive. Thats why I thought of developing a more dynamic model by using a reference group that meets regularly with contact between meetings. The ‘Experts by Experience’ group was thus born. In order to avoid the potential problem of the same members appearing, the group consists of individuals who are prominent in the patient movement and organisations that represent patient groups. This ensures the membership remains dynamic.

So, what has the group achieved? I believe it has begun to achieve an identity of its own. Certainly more people are aware of the group now, even to the top of the organisation, which can only be a good thing. creating a unique identity. recent successes include members being invited to join Faculty module and even programme scrutiny panels. Early signs are that members are being made very welcome by academics and, importantly, feel they are playing an important part in the panels deliberations.  These are early days but the vibes are looking good. I am curious as to the long term impact of such involvement on the patients and the faculty staff, and of course the students. Watch this space!

Recently I attended the latest meeting of the Higher Education Academy (HEA) Lived Experience Network. This is a vibrant grouping of academics, patients/service users and carers that meet three times a year to share good practice within healthcare PPI in education in different educational institutions around the country. The host institute will usually ‘showcase’ their activities to encourage patient & public involvement within their organisation and ask for comments, observations, etc. Last weeks meeting was hosted by Bradford university and featured their service user and carer involvement group. They effectively told ‘their journey’ to date which has been underway for the last ten years or so.Some highlights include the development of an open online resource, the virtual fictional town of ‘Bradton’ which is based on real people and real groups (http://bradton.pbworks.com/w/page/51823092/Home%20Page). This is an amazing resource that any institution or group can utilise for educational purposes. Clearly a great deal of work has gone into preparing the material and could be considered a brilliant example of collaborative work between the academics of Bradford uni and their patient/carer partners.

Another example of what true collaboration can achieve, and is the result of the many years of evolving this relationship, is the university of Bradford school of health studies service user and carer involvement strategy publication. This document sets out in detail their commitment to service user involvement at each stage of the student journey, from student recruitment and induction, student learning and teaching, curriculum development, course approval, evaluation, governance and research and finance for PPI activities.

Its very clear on the school web home page that they prominently display their commitment to service user and carer involvement. To quote: “All our courses have been approved on the basis that there is substantial involvement from Service Users and Carers. As such students should expect Service Users and Carers to have an impact on their learning whether that is through face to face contact, in teaching sessions or assessments, through the production of re-useable learning materials, such as digital stories, audio or video and the evaluation and management of their courses”.

So, why am I extolling the virtues of the PPI agenda of Bradford university? Actually, other institutions also have well developed successful approaches that have been showcased at previous meetings, including Leeds medical school and Liverpool School of health sciences. Everyone has evolved their own way of doing this, although we can all share good practice and reduce the need to reinvent the wheel. However, I would like to speculate what those that are more successful at developing their PPI agenda have in common.

I would suggest that common factors amongst those institutions that have appear to have developed a genuine commitment to patient and public involvement have a sense of their own individual ‘identity’ for PPI, a shared set of ‘values’ between academics and patients and have therefore demonstrated a ‘culture of collaboration’ in which to achieve high levels of involvement. They have a ‘can do’ approach to involvement that can overcome the many barriers  I have discussed in a previous blog entry. What evidence do I have for these observations? Here are some brief reflections:

• The service user group have developed their own logo, leaflets, web presence, mugs, etc. They have their own distinct ‘identity’ within the school.
• The pride demonstrated by a patient when she talked about being involved with students and staff in ways in which she could see the contribution she was making.
• The words spoken by the Dean of the school within the strategy guide foreward when she talks about he school “being serious in its commitment to want to (her italics)  place service users centrally and to move beyond mandatory requirements.
• The ‘buy in’ from the school (academics to finance) that makes this work across the school (plus a very generous PPI budget!)
• A shared set of values is evident from taking account of all the above.

Clearly this is not evidence and is only my brief observations/reflections based on a document, website and a meeting. Its also not the only way to become successful at PPI and by their own admission Bradford is a work in progress. What is clear is than many other institutions are deciding to grasp the nettle of PPI seriously and overcome the barriers that are present within universities per se, and doing this in differing ways. It does appear that this ‘shared set of values’ could be considered common to those institutions that appear successful. This is only a personal observation however and would need further study to explore.  However, the challenge  increasingly will need to move beyond developing a successful PPI culture to determining whether such a culture, or any other PPI approach, actually makes students into better practitioners, which could then mean improved patient outcomes for all. In other words, what impact does PPI in healthcare education have and how can we measure/observe/explore and record any impact it may have had.

Comment is always welcome about any of my blogs.

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.

My last blog argued that the good old ‘face to face’ session in which a patient talks about their lived experience to students is an example of tokenism if its the only involvement approach used. Too often in the past these sessions have only been used by academics as a way of allowing students to hear ‘from the horses mouth’ what its like to experience health conditions of all kinds. What’s wrong with this, you may well ask? Well, nothing, if you do it properly, do not overuse this method and its not the only type of involvement method you use. ‘Doing it properly’ in my view requires academics to really get to know your expert patient and be kind to them. For example, sorting out transport issues such as taxis or car parking slots beforehand if required. Spend time before the session and after it to ensure the person is ok. Brief the students before the session. One of the most important aspects that enables a face to face session to work is for the teacher to stay in the room with the person and before any one shouts ‘power and control issues’, I see my role as the intermediate to clarify issues between students and expert patient, not to control the session to my preconceived ends!  Whilst its true that all teaching sessions need to have learning objectives, a session that exposes students to the lived experience of a person is by its very nature a unique learning opportunity for all, including myself as an academic, and the expert patient themselves. It is useful however for all these good practices to be included as a protocol for staff who are inexperienced with such a session and would otherwise lack the confidence to do them (this lack of confidence is then a barrier if it prevents some academics from utilising lived experience sessions).

Sometimes however the retelling of a strong, emotionally resonant story can be very difficult for a person, particularly if they are regularly asked to tell it to differing audiences. In this case I have utilised recording the story (for example, using an mp3 recorder) and making it available to students to listen to as an audio podcast. Any face to face session could then be utilised as a question and answer session if appropriate. Alternatively, why not utilise online resources?  Q and A online forums, blogs and wikis are examples of how technology can be utilised to enable students to be exposed to the lived experience if the person themselves fely comfortable with such technology.  Recently with a colleague  l was involved in a meeting with a group of expert patients on the planning of a Q & A panel for students. One person was unable to attend the meeting in person so we utilised Skype to enable that person to be equally involved in the discussions. Using technology such as this can enable even the most disabled of patients to participate in involvement activities. A colleague once said to me they didn’t ask patients to attend face to face sessions as most of them would be too disabled! Using technology as in the previous example can help overcome such barriers.

As technology becomes ever more important within the education of students, there is no reason why we cannot also utilise it more to be creative and allow our students to be exposed to the lived experiences in more accessible ways. These can help overcome access and ’emotional fatigue’ problems that can often arise when a person addresses students in person. However,  if that method is used as I have argued, please be kind in the way it is conducted and always adhere to the needs of the person involved.