The 2008 Diabetes Research Network Patient Involvement Conference
How can patient involvement move diabetes research forward?
The DRN’s First Patient & Public Involvement Conference was held on 4th December 2008 at the National Council for Voluntary Organisation’s Conference Suite, in London. The event sought to bring together many of the patient advocates who have been working closely with the DRN coordinating centre and DRN local research network centres, to share some of the good work that has been going on across the network and discuss ways forward.
The day was planned to be a mixture of presentations, interviews with patient advocates who had experience of active involvement, and a series of workshops. To see the day’s programme and the profiles of the speakers, please visit the links below:
The day was a success, with 35 patient advocates attending from across England, ranging from those who have been working with the DRN coordinating centre or local research network centre, to those newly engaged and about to become actively involved. Staff from the DRN coordinating centre and local research network centres also attended, as did representatives from the NIHR Clinical Research Network (NIHR CRN), INVOLVE and Diabetes UK.
Martin Lodemore, the DRN’s Patient & Public Liaison Officer, welcomed everyone to the event and handed over to Janice Turner, a patient advocate with the DRN Advocacy Group, to chair the morning session.
The day began with the DRN’s Director, Professor Des Johnston, outlining the reasons why the Clinical Research Networks were formed, why diabetes was selected as one of the target topics, and what the DRN had achieved in its first three years. A link to this presentation is available in the right–hand column under ‘Presentations’.
Dr Eleanor Kennedy, the DRN’s Project Manager, delivered a well–received talk covering the history of diabetes research, where we are today, and some of the possibilities for research in the near future. A link to this presentation is available in the right–hand column under ‘Presentations’.
Martin Lodemore gave a short presentation about what PPI means to the DRN and listed the various patient involvement activities, both current and planned, within the coordinating centre and local research network centres. A link to this presentation is available in the right–hand column under ‘Presentations’.
A discussion forum then took place, with four experienced patient advocates taking the stage to be interviewed by Roger Steel, the NIHR Clinical Research Network's PPI Manager. Janice Turner, Ralph Ormerod, Dianna Oxley and Ann Middleton all kindly agreed to participate, and each talked about how they became involved in the variety of activities they are involved in, both inside and outside the DRN. It quickly became clear that each patient advocate was passionate about being involved, and they shared their knowledge and experiences with the delegates.
Following a brief lunch, Martin Lodemore chaired the afternoon session, which began with the World Café Event – three workshops which looked at:
- Starter: "What can we do to make research more accessible?"
- Main Course: "What would you like to see diabetes research deliver in the next 20 years?"
- Dessert: "What support would you like to help your involvement in research?"
Delegates moved from table to table for each course, continually mixing with new people to keep the discussions fresh. Thanks go to all those who shared their views and opinions, and especially to the six table facilitators who noted the discussions and fed back after a short tea break. See Amalgamated feedback from the workshops. 
In hindsight, the discussions would have benefitted from more time, but the feedback generated by the discussions was wide–ranging and has raised a number of challenges for the DRN in the future.
To complete the day, Derek Stewart OBE gave a rousing presentation about what people can bring to discussions in healthcare, what they can achieve when they become involved in healthcare research, and he described his experiences while being a ‘Catalyst for Change’.
The day closed with a big thanks to all those who attended and participated so fully in the event. The complete list of attendees can be seen on the right-hand column of this page.
We look forward to seeing you at the next DRN patient involvement conference.
To see some of the feedback received following the event, please click on the link below: