Co-developing an open-access course with a patient partner
By Lisa Jones (patient partner), Liz Dalgarno (MPH) and Cath Wasiuk (i3HS)
In a previous post, we examined the creation of an open-access course from an academic perspective. In this post, we look at how we have embedded the patient voice into the design and development of some of the Hub’s most recent open-access courses.
The article Patient Engagement in Medical Education lists many benefits for both learners and patients. The benefits for learners include:
- a better understanding of the patients’ experiences and perspectives,
- opportunity for feedback from patients,
- reduction in anxiety in working with patients’ populations, and
- improvement in attitudes towards patients and increase in respect for the patients.
The benefits for patients include:
- an opportunity to share their experiences in a positive context to make a difference in the attitudes and perceptions of health professionals,
- a sense of validation of personal experience, and
- an increase in knowledge and personal skills.
We look at the experiences of how a patient partner (Lisa), an academic (Liz) and a learning technologist (Cath) have worked together to develop open-access courses and concludes with some practical recommendations on how to embed the patient voice in your course development. Lisa, Liz and Cath have worked together on 2 open access courses — Women’s health: Work, rights and risks and Living and Working with Pain. Lisa has also peer-reviewed 2 other open-access courses for the Hub.
How did you get involved in the project?
I got involved with the project as I was doing some patients experience for Manchester University on antibiotics and infections and I got asked to review an open-access course on antibiotics. That led on to Cath to get in touch to see if I would like to review another course. I really enjoyed reviewing the course and I was very shocked but so happy to be asked by Liz if I would like to help develop an open-access course and now I’ve been asked to help develop a second open access course too.
What has your involvement been?
Firstly my involvement was reviewing courses before they go live but now I’m also helping to develop courses by sharing my experiences as a patient with my different medical conditions. I also look at things in a different way as I also have other volunteering roles for the NHS so I bring that knowledge and experience too.
What are the benefits of being involved in the project(s)?
The benefits are massive for me. It’s given me so much confidence and enjoyment and it’s such an honour to be asked to be involved. I absolutely love working with the i3HS Hub, especially Cath and Liz. Actually being asked for my opinion and knowledge as a patient and listening to my experiences and others like me means the future of learning especially with open access courses is changing. Working together means such better outcomes and understanding for everyone.
I’m learning so much too and keeps my mind active and helps me so much with my mental health, knowing I can help when I feel well enough and being fully supported makes all the difference. It’s one of the best things that’s ever happened to me.
Are there any negatives?
Absolutely no negatives at all.
Including the patient voice has been hugely beneficial to the development of our open access courses. As a researcher / professional, you become entrenched in the language and systems that dominate the topic areas you are producing courses about. This can at times create a viewpoint that is highly focused and narrow. Although being a qualitative researcher, where the person’s voice being centre and reflexivity is something second nature to me and encourages me to reflect on these issues, at times I may still become entrenched in certain ways of thinking.
Having the patient voice (in this case the voice of Lisa) means I am continuously brought back to the patient perspective. In disability studies and activism, the phrase ‘nothing about us without us’ encapsulates how policy-makers were urged to empower and put at the centre of their politics the people who the policies were about. This is also crucial within the development of open-access courses and indeed any courses. Teaching and learning is a dynamic web of interchangeable thoughts and ideas, where the boundaries of teacher and student are blurred, even diminished completely, where the aim is to be creative together and to produce something that is as honest as it can be, for the benefit of others who wish to explore something new to them.
That is what the patient voice, Lisa’s voice, brings to our open access courses; honesty and integrity. Lisa constantly teaches me something new every single time we speak and yet she is relentlessly humble. There are many examples in teaching and learning of tokenistic and box-ticking exercises to convey the inclusion of the patient voice, without actually respecting and including honestly that person’s experiences and ideas. At Manchester, we strive at every point to make the learning experience learner-led and on our health courses, both patient and learner-led. There are simply no negatives in producing open access courses in this way from my perspective, only endless and bountiful positives.
Lisa’s involvement with the Living and Working with Pain open-access course has been invaluable. Her lived experience of living and working with pain brings a deeper understanding of the topic and makes it relatable to others. For example, the videos she created on the physical, social and emotional impact of pain are engaging, sincere and brutally honest.
As well as creating content for this course, Lisa has been able to provide rapid feedback on the course content, which has helped to shape the course development. The i3HS Hub teamwork in an agile way where possible to develop teaching materials, and Lisa and Liz have embraced this way of working where we have created a team environment that is open, honest and respectful. We have developed the course remotely during the pandemic and have used technology to communicate, create and collaborate.
Recommendations for working with a patient partner
- Be mindful of your patient partner’s personal circumstances in order to establish how, what and when they can contribute to your project
- Don’t assume that patients are aware of teaching and learning terminology and institutional acronyms — always ensure that you make your language transparent
- Make use of technology to involve the patient voice, for example, commenting on drafts (Word docs or Rise), attending virtual meetings and creating resources (such as video)