The who, what, why, when, where and how of PPI in Meded

I recently had the pleasure of giving the plenary session at the BeSST (Behavioural and Social Scientists Teaching in Medicine) one day conference and AGM. With a brief to explore how patients, carers and members of the public can contribute to medical education, I went down the who, what, why, when, where, how route. As promised, here is a blog to summarise the key points of my plenary session.


WHO?
Surely the term PPI indicates who medical schools should be engaging. Patients, carers and members of the public. But I want to explore those all-encompassing terms a bit more...

Patients and carers are people with an awful lot of experience from the 'University of Life', with often powerful stories to tell about their illnesses or experiences. But these are also people who have exceptional skills - skills developed before illness, like any professional does in any kind of job, and skills honed through illness that contribute to self-management. You are engaging people, not just patients and carers, and these are people who have potentially enormous skills that they could contribute to medical education. (See previous blog on the nature of knowledge)

A concern I have heard once or twice about who to work with in this field, is "we can't find the right patients". Round peg, square hole. In my opinion, it isn't really that you can't find the right patients, but that you have the wrong opportunity for them to be involved! The round peg isn't going to change, so you need to think about changing that square hole... into a range of different holes, that facilitate the involvement of many different kinds of people.

WHAT?
Going back to basics, medical education is about creating the doctors that we want looking after us tomorrow - doctors with the right skill set and values. The groups of people who know what that means are patients and carers. Saying what you want in a healthcare professional is one thing. Having the opportunity to contribute directly to the development of healthcare professionals through their training seems to be the next logical step - both in the direct teaching, and in every other element of a medical school.

To clarify, this sort of patient involvement is distinctly different from patient contact on placements. The latter is essential, but not what I am addressing here.

WHY?
There are the usual reports from the usual suspects about why we should be doing this... The Health Foundation Can patients be teachers? report in October 2011 states that "there is strong evidence that PPI has short term benefits for all involved, across a wide range of domains". These are listed by Wykurz and Kelly (2002). The real answer to the why? is lost in the lack of longer term evaluation. Perhaps this lack of evidence is the reason behind the fact that "generally PPI in health professional education is low on the agenda of influential leaders in health professional education" (Health Foundation report). I suspect there are plenty of other reasons behind it, but at least developing the evidence base in something WE can do something about! The research world is already doing great research in partnership with patients, carers and members of the public. Why not collaborate and co-produce the evidence that patient involvement works in meded with patients themselves!? That has to start with working out how to measure it...

The omnipresent stick in this situation is the GMC, who produced Patient and public involvement in undergraduate medical education as part of the 2009 Tomorrow's Doctors series. As a document it helps challenge medical schools about this agenda, saying:

"Schools should consider whether there is scope for involving patients and the public in selection of medical students... ...Patients can contribute unique and invaluable expertise to teaching, feedback and assessment of medical students......Patient and public involvement in development of curricula and assessments, governance and quality management and control is not yet as common but there is great potential for development..."

I suspect that none of the above is news to many of you. So why do I think PPI in medical education can make an impact?
Firstly, it is about medical schools embodying the values that they want their graduates to embody - working in partnership with patients. The same principles underpin the collaborative relationship between a patient and healthcare professional in the clinical consulting room as with the collaborative relationship with medical schools and patient involved with them or patient leaders. What better way to learn those principles than to see them in action?
Secondly, I see PPI in medical education as an opportunity to introduce the full potential of patients to future healthcare professionals. As a medical student, I only ever saw patients as ill people needing medical care. What if we could open students eyes to the potential of patients to be their colleagues in service design, quality improvement, policy, research, education or whatever other field they go into? Thinking optimistically, this could mean greater embrace of the role of patients in both their personal healthcare and the healthcare system itself.

WHEN?
The simple answer is everywhere! From the beginning to the end of the student's journey through your establishment.
Delving a little deeper into curriculum, it isn't just the clinical topics that warrant PPI. Although the link may be clearer for cardiology modules, less patient-facing modules such as those about research and policy are prime opportunities to show case the potential of patient involvement and leadership, with plenty of examples from INVOLVE covering research, and Centre for Patient Leadership covering policy.

HOW?
From my experience as a student and since as a patient involved with medical education, the bread and butter of this field is patients sharing their stories. Stories are great, as this quote from Philip Pullman summarises so eloquently:

“True stories are nutritious and sustaining. They feed the mind with information and the heart with hope and strength.”

The two key aspects of the medical profession are highlighted above: the mind for clinical excellence; and the heart for compassionate care. Stories are invaluable, in any format, be it in person, a video from Healthtalk Online, an audio pod-cast or written blog. But the contributions that patients can make to medical education doesn't stop there. This isn't really that new. Osler mentions it 110 years ago in 1904:

"For the junior student in medicine and surgery, it is a safe rule to have no teaching without a patient for a text, and the best teaching is that taught by the patient himself.” 

If you just ask people to share their stories, you are missing out on greater potential. Whilst acknowledging that stories are great, and if that is how people want to contribute to medical education, that is great, it is important to think about other holes that us round pegged patients can fit in. But like any co-productive partnership, this is about finding something that benefits both parties. 

With Active Patient Involvement in the Education of Health Professionals (2010), Towle et al developed a taxonomy for these different levels of engagement. Beginning with patients as the subject of a case study through six stages to "patient(s) involved at the institutional level in addition to sustained involvement as patient-teacher(s) in education, evaluation and curriculum development for students"

One of the practical issues that falls under how? is around making the principles of value and equality meaningful. This encompasses protocols for involvement that I know some universities are developing, which can be really useful guidelines around support (processes, accessibility, briefing, feedback, practical arrangements etc.) for anyone to incorporate PPI into their work. But I can't not mention the financial practicalities, not least because I know it is something that affects both us as patients and yourselves as professionals. I've been really lucky to have the opportunity to work with people within meded who understand why financial reimbursement for some activities is essential. But they are often in environments or institutions that don't see that. PPI in research seems to have well established within the same institutions. In my opinion, considering the skills that people are contributing builds a role description that makes it easier to see the value. And for some people, financial reimbursement isn't helpful because of benefit situations, so other forms of support or training opportunities can be valuable. For example, I have recently received access to a journal in return for my involvement - a very helpful thing for me! 

Overall, the how is about doing this in a way that stays true to the principles that underpin patient involvement: transparency, not making assumptions, valuing different contributions, reciprocity, equality, parity of esteem and open honest dialogues.

The Higher Education Academy Lived Experience Network (HEA LEN) is a great national network giving professionals and patients alike the opportunity to share best practice and learning. Having attended one meeting, I was impressed by the atmosphere within the group, where the equality of patients and professionals was very clear. 

WHERE?

The obvious answer is in a medical school, but I want to challenge you to consider ways that this involvement can still take place within your institution, without being within the bricks and mortar of your institution. 

The public assumption that people are either healthy and working full time or ill and not working at all couldn't be further from the truth. Whether working full time, part-time, or however, being a patient is time-consuming in itself. This means that patients time is tactually quite valuable, and not something that be frittered away. Mobility, travel arrangements and geography considered, face to face sessions can be a challenge. Luckily, technology is facilitating more and more holes that suit more different pegged-shaped patients. 

Twitter is a great melting pot of professionals, students and patients, providing opportunities for people who'd never normally get the chance to chat to discuss in an open forum. Now most professional bodies have guidance on social media, the inevitable risks are much more management for universities. Dr Simon Eaton (@drsimoneaton) has used a hashtag (#cidr14) for a recent module he ran.  He also compiled views from Twitter to support his teaching, collected into a Storify which is a great resource. James Wilson (@JamesJWilson) used a hastag, #apphs14, for one of his modules too. The key here is getting patients to use these hashtags - promoting them among the many Twitter communities such as #PatientLeaders, #Spoonie, or #OurD. Perhaps a #meded Twitter chat might focus on this subject soon?! 

Blogs are another great resource, and something I would love to see an integral part of med school reading lists (as already discussed!). Blogs can cover general experiences and insights, but many have close ties to the curriculum, as does my post on the biopsychosocial model of disease. Many patients have great ones, but so do a growing number of professionals involved with medical education, such as Trevor Kettle. This presents a great opportunity to learn from others. 

Skype presents opportunities for face-to-face in a way... Little extra technology is needed for a patient to Skype into a teaching session, be it a small seminar or large lecture theatre. I've been lucky enough to do both, and had very positive experiences of both. Here is a blog with the perspective of a university professional on the experience. For teaching sessions, meetings or committee sessions, Skype can be a great enabler. 

Without the real-time constraints of Skype, video can offer similar opportunities. I have delivered a lecture and seminar via pre-recorded video, with just the basic built in video camera of a modern laptop. 

I appreciate that there are challenges in everything I have suggested above, but I hope that as patient leaders, we can work with you to develop the confidence for us all to use our skills to their full potential to support medical education.