The Health Foundation will launch a programme supporting collaboration between health care professionals, patients and the public in 2020. In advance of the launch, we are hosting a series of workshops to design an approach that reflects the needs and experiences of these stakeholders. We recently teamed up with DigiBete – a social enterprise that co-produces video resources on diabetes with patients, families and clinicians – to explore collaborative approaches to improving care for people with long-term conditions.
Joining with the Health Foundation to co-design and deliver the first in their new series of workshops tapped into the sweet spot of my organisation, DigiBete. The focus on helping patients, families and health care professionals to collaborate is the concept which drives our work.
In 2015, my 20-month-old son was diagnosed with type one diabetes. Motivated by this devastating diagnosis, my partner and I set up DigiBete and partnered with Leeds Children’s Hospital to assist us in achieving our mission of helping families and communities understand the principles of good diabetes care. Capturing diverse patient and family voices has given us a rich – and sometimes raw – insight into the complexities and challenges faced by patients and families living with a long-term condition.
Our insight into these complexities and challenges were the focus of the workshop, at which we welcomed an eclectic mix of families and young people living with long term conditions, digital developers and health care professionals. Such a mix made for a day of discussion that disrupted the perceived and real divisions between professionals, patients and families.
Activities throughout the day were designed to challenge different skill sets and stimulate meaningful conversations about what good collaborations look like. Happily, this was achieved, as one young attendee, who is living with a long-term condition, commented: 'There was a health care professional on our table who was really surprised by my experience as a patient. It was interesting that he was actually quite shocked when hearing my experiences in the community.' This participant also reflected that, in his experience, some professionals didn't always have an open mind about what people living with the conditions might really feel.
This experience is not unique, and one which the Health Foundation is incorporating in the design of its new programme. As a parent participating in the workshop shared: 'I felt very valued and felt that they wanted to know my thoughts and experiences.' The same individual also noted: '[I] liked how they listened to the young people that were there and respected their opinions.'
In one activity, participants deliberated on why using the right language matters to them. Some patients and families wanted to own their expertise, whilst others winced at the very thought of being called 'an expert by experience'. Such contention over terminology was echoed in discussions about the way new programmes should be described. This dialogue brought to light the challenge of collaborating with and reaching audiences who have unique and varied interpretations of language. This was a thought-provoking outcome from the day, and something that will be integral to ensuring the reception and success of the programme.
It was clear over the course of the day that all participants agreed better models of care would best be achieved through working with a wide community of people. As a health care professional from Leeds stated: 'I thought the day was a great way to focus on the power of working collaboratively. Getting the opinions of professionals from different disciplines and people living with long term conditions, in different formats, enabled lots of discussion and talk about possible solutions as well as the challenges of collaboration' However, there is important work still to be done in these initial stages; the young patient (mentioned previously) reflected that there were missed opportunities to shift the dialogue to focus more on patient perspectives. Similarly, others in the group felt some activities could have been more inclusive for young people.
Such feedback demonstrates this kind of collaboration will never be straightforward. Building personal relationships and having the right mindset are key to achieving better models of care. But judging by the conversations at the workshop, the will and desire to make it happen is certainly out there.
The next workshop is on collaborating to improve local health and care services, focusing on how health care professionals can work with the wider community to improve care. If you’re interested in finding out more, email firstname.lastname@example.org
Maddie Julian (@MaddieJulian) is Co-Founder and Director of DigiBete.
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