I attended a fantastic event in Bradford last week where people were keen to develop and improve the connection between patient experience, care, treatment, research and commissioning. Superb resources to engage and involve the public in research and campaigning are highlighted below.
Who was there?
Over 80 people from all walks of life, different backgrounds and cultures attended. They were interested in diabetes care and wanted to make a difference. The vast majority had little or no prior engagement or active involvement with research or commissioning. They were mainly patients and carers from the local population who wanted to find out more.
This was very different from the run of the mill active involvement in research which seems to mainly attract a certain type of individual of a certain background and age.
How did people hear about the meeting?
Some had heard a radio advert, others read about it in the local media. Some had seen a poster advertising the event or had been invited to attend by health professionals and the charity.
This approach to communication, focussing on making improvements in just one medical area made it far more inclusive and open. The expectation upon the attendees was to share experiences within set questions.
What was the meeting about?
The meeting was titled Improving Local Services Together (ILST). This is an interesting and exciting initiative run by Diabetes UK that simply does what it says on the tin.
It was so good to see patients, carers, clinicians, health professionals, researchers all working together in the same room with the same aim. There was no apparent 'them and us’. Research was not a separate and distant relation - It was a part and parcel for good care, better patient experience and improved outcomes.
What was I doing there?
I was fortunate enough to be invited to speak and help with a workshop at the event about how patients and carers might participate and get involved in research.
I speak, all too often, at conferences, events and meetings that are all about research. I know how to speak ‘research’ and have experience of the culture and behaviours inside the research world.
The fact that this event was about people and their experiences made me realise just how far research has to travel to be really meaningful to the population as a whole.
Who hosted the event?
It hosted by Bradford Teaching Hospitals NHS Foundation Trust in conjunction with the local Clinical Commissioning Group with the local DiabetesUK Support Group
This combined approach is helpful for the public and clearly demonstrates that health professionals want to help improve patient care by understanding the patient experience.
Where and when was the meeting held?
The meeting was held at Kala Sangam Centre a vibrant community arts organisation in the heart of Bradford. Great facilities with great atmosphere and food.
Registration began at 4.30 and the meeting started at 5.30pm
It was good to kick start this initiative in a central and accessible venue at a time when most people can attend. I am now following @Kala_Sangam on Twitter.
How was it organised?
Improving Local Services Together (ILST) was ably facilitated by Isla Dowds, who ensured that the main focus of the event was about the providers of health services listening and learning from patients. Isla is the Patient & Public Engagement Facilitator - Patient Experience, Bradford Teaching Hospitals and used to work for the NIHR Clinical Research Network.
A marketplace with different displays and stands to provide support, advice, and more importantly sharing of experience, ideas and how to improve patients lives through prevention, treatment and research.
The formal welcome was from Dr Donald Whitelaw, a senior clinician and active researcher
Alex Deveraux, Project Manager, Diabetes UK spoke briefly about the ILST project. I spoke about research and Dr Kulpana Patel and Vicky Wallace from the Clinical Commissioning Group explained why it was important for them.
All of these very brief talks set the scene for a dialogue in smaller group settings.
It was great to see the majority of the time being spent listening to people instead of the usual 'telling the public'.
Useful Resources
Diabetes UK have a number of very helpful leaflets and guides about how to get your voice heard, how you help shape and influence the decisions they make as a charity. Care, Connect, Campaign
RAISE YOUR VOICE - inviting people to sign up to Diabetes Voices to have a meaningful and relevant say in influencing diabetes care.
INVOLVEMENT IN RESEARCH - a simple folded A3 sheet with information about being an active voice in shaping research, examples of current and recent studies that are taking place along with advice on how to donate to the work of DiabetesUK.
BRIDGING THE GAP - Another folded A3 leaflet extracted from a magazine explained about Grants Advisory Panel and how people affected by diabetes help the charity make good decisions about what research to fund.
REGISTRATION FORM - for people to keep in touch with developments in diabetes care and research. The form offers choices as to what people might be interested in doing to help make a difference.
The Workshops
In the two workshops we ran we spent a little bit of time talking about the three elements of taking part in research studies, getting actively involved and being engaged in what is happening.
The notes and questions included…
- How do we stop research being scary?
- Need to involve local GPs and hold events in the communities to make research more available
- Encourage students to volunteer to help DiabetesUK
- Build up a list of Ambassadors for research and Diabetes - using people who have been on studies to demystify and explain what taking part means
- Have information about research in all clinics
- Why was Ramadan chosen for this meeting?
- Use dieticians and other health professionals to get the message about research across
The last part of our discussions looked at how the experience of being a patient or carer might be of value to researchers to know what patients need, to help design better research and how to get the results applied to improve people’s lives.
Anne, a researcher and diabetic even came along seeking help and advice about a piece of research with which she is involved.
Thank you!
Many thanks to all the people who came along and to Christine Kelly, Trust Research Nurse who helped facilitate the two workshops.
Well done to the people of Bradford who attended the event. It was a real pleasure to meet you and I wish you all the best in the future. Well done to Bradford Teaching Hospitals and the Bradford CCG for hosting the event. Well done Diabetes UK. Well done, Isla!
Improving Local Services Together (ILST) is a brilliant concept that can make research meaningful and relevant to improving people's lives. The model works because it is a true partnership between the communities, research and health professionals.
And finally
It would be good to see...
- More Hospitals and CCGs taking up this initiative
- This model being applied across many different clinical pathways and showing the relevance of research at all stages of patient experience
- The approach being cascaded in local communities and groups using local Diabetes Voices volunteers to role out the current model and providing feedback to Commissioners, Providers and Researchers
- More researchers in attendance looking at Diabetes experience as a driver for research
- A closer relationship between local communities and research
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