Patient Leadership: Both an OT’s and a patient’s perspective

Thinking about Patient & Public Involvement and Patient Leadership as an Occupation

Hello, my name is Anya de Iongh and I’m a first year OT MSc student at the University of East Anglia in Norfolk, UK. I became inspired to study OT after experiencing illness myself which led to getting involved in patient partnership and leadership.

I want to talk about patient leadership, patient and public involvement and the patient voice for two reasons. Firstly, because as OTs, we need to be partnering with these people in all of our work improving services and designing research as well as creating policy. But also for the people we support as clients, patients or service users, since getting involved in these activities can be seen as meaningful for them and supporting this idea is central to our role as OTs.

All healthcare professionals have a responsibility to champion and promote patient partnership, but I feel that for us (OT’s), it’s a special tool in our toolbox which helps us support people to gain meaning and purpose in their lives post illness. Our profession is very inclusive of activism, advocacy and campaigning and these activities can be meaningful occupations for both us as OTs, and for everyone else as well – including the people we support.

When you have a health condition (of any kind), many activities and roles feel unachievable, and the sense of doors closing all around you can be overwhelming. Other doors can open however, using the expertise and insight that you gain through using health and care services, as a patient. The challenge is that these doors aren’t always visible, or don’t always look open, so the value of an OT exploring these opportunities with people is extremely important.

My experience of illness in my early 20’s left me with a distinct lack of anything that gave me a sense of purpose or belonging, and finding both of these in such an exciting field as patient leadership was a massive turning point, both physically and mentally. As I now study occupation as an OT MSc student, and I begin to gain a deeper understanding in what the ingredients are for a meaningful occupation, I see a whole new value to being involved as a patient in these roles.

The range of different ways that people with ‘lived experience’ can get involved is infinite. The opportunities I enjoyed most centred around social connections – meeting other people with similar experiences and as well professional colleagues and feeling part of a team, but it didn’t end there. Reviewing papers as a patient reviewer for the BMJ, or research funding applications, gave me the opportunity to develop new skills (such as public speaking) and the sense of giving back and contributing to a wider movement. Others get involved in technology development, peer support, organisational development and a million other things from the smallest hospitals and primary care services to national and international organisations. Indeed, the international collaboration and networks for patient leadership and partnership reflect the values that SPOT champions around cross-cultural learning and sharing!

Occupation is much more than one’s employment, as we know, but the productive occupations still dominate the public discourse about occupations in the traditional sense. One of the questions I dreaded so much when first ill was the inevitable ‘so, what do you do?’ question. Once I had started on my journey as a patient leader, I felt pride in being able to reply with a range of the exciting programmes and projects I was involved in – I was occupied!

Using my experiences of illness to contribute to improvements for others was therapeutic in itself as well. In fact, many people talk about these kind of activism roles as helping make sense of their own often difficult experiences.

It is a way of genuinely recognising the strengths that a person already has, beyond the deficits of an illness or disability that they may feel have been since lost or overlooked. The transferability of these skills can be invaluable. Direct examples might include life-long teachers getting involved in medical education of student professionals, but all skills from working and other aspects of life can be assets even indirectly to patient leadership roles.

As with all occupations, it is personal and doesn’t suit everyone. Like other occupations – waiting for the right wind to go on the water, or dealing with equipment failures, patient leadership isn’t all plain sailing. There are set-backs and frustrations when working with systems with their own complex set of rules such as healthcare. But the achievement of navigating these and the skills you learn in mastering these contribute to the meaning and value of PPI as an occupation. For these experiences to be meaningful also requires the healthcare professionals and others to make them genuine, following best practice and avoiding tokenism – that is a responsibility we should all look to fulfil in our roles as OTs.  

One of the challenges is that people often aren’t aware of what is available within the world of patient leadership and involvement. Part of our role as OTs is to work with people to identify new occupations that could be of interest, as well as adapting and rethinking existing activities. OTs have a reputation for recommending crafts or gardening, but what if we added PPI opportunities to our toolbox as well? Knowing what PPI opportunities existed locally, or within our field, would be key to having a full range of options to explore.

There are some links below that provide further inspiration – stories demonstrating the transformative power of patient leadership as a deeply meaningful occupation, and organisations to go to, to find out more.

Interested to find out more?

David Gilbert’s book, The Patient Revolution (2019, Jessica Kingsley Publishers), provides ample inspiration for what opportunities exist for people to engage with using their lived experience.

For those in Europe, the European Patients Forum is a good starting point (and WegoHealth in the US).

Anya de Iongh is a first year MSc student at the University of East Anglia (UK). She has written about her experiences as a patient and patient leader on her now archived blog ( and currently tweets as @anyadei.

Bookmark the permalink.

Leave a Reply