The Diabetes Research Network (DRN) has people affected by diabetes involved in various groups or committees, such as a national committee organised by the DRN Coordinating Centre, and one connected to a DRN Local Research Network centre – they call these people Patient Advocates. The DRN has developed an approach for finding out about Patient Advocates’ training needs.
How were Patient Advocates asked about their training needs?
People affected by diabetes who had already been members of research groups for some time were asked what kind of training they would they have found helpful early on in their role. A questionnaire, based on these experiences, was developed. The questionnaire was piloted with local groups and further developed which took some time. It was sent to all active Patient Advocates. The questionnaire asked about three main areas:
People were asked which of these they thought were important for their current or future roles, what knowledge and experience they already had and where there were gaps and then what training they might need.
When was the training needs assessment carried out?
We aimed to assess training needs within six months of each group being established. Some groups raised this earlier, or even discussed training issues at their first meeting – but it was felt they needed to get a feel for their role before they could fully complete the questionnaire.
What has been done in response to the findings?
By using the questionnaire for each group, it has been possible to tailor the training content to match the particular interests of the members. So far this has gone down very well.
The results of the first batch of questionnaires showed that there was a need to develop training around the research process, to demystify some of the terminology and what actually happens during the planning and delivery of a research study. So, for example, if Patient Advocates were looking at a patient information sheet, they wanted to know more about where that fitted in to the whole research pathway, to know who had been involved in developing that information and what would happen afterwards. This was important to people so they could better understand how their input would make a difference.
A one-day workshop has been developed as an introduction to clinical research. It has a particular focus on the early stages of research – how to come up with a research question and develop a research protocol. See case study 12 for details of this training day. This workshop has now been delivered on numerous occasions, across the country, to a variety of groups.
It is tricky to try to cover everything with the limited resources available – so training days have been delivered by DRN staff members who are experts in their field. Where the required expertise is not available, external trainers have been sought, for example Sally Crowe was commissioned to run workshops on Critical Appraisal Skills (see case study 15 for an overview of this type of workshop).
Contact for more information:
Martin Lodemore, Patient and Public Liaison Officer at the Diabetes Research Network