NIHR CLAHRC Oxford not only recognises the importance of public involvement to research but also the importance of supporting our public contributors to maximise their confidence and ability to contribute to our work and that of others.
Taking your first steps into the world of research can be a daunting experience at first, having to rapidly understand new language, terminology and processes. Even when researchers are able speak about complex topics in ways that everyone can understand, it can still be hard to orient oneself amid the various regulations, ethical considerations and other areas of medical research that can come up in discussions.
For this reason, and in partnership with NIHR Oxford Biomedical Research Centre, the CLAHRC developed a series of PPI training workshops for our contributors.
The approach was piloted and evaluated in 2016 and repeated again in 2017, between September and December.
The topics of the workshops in 2017 were:
- What is being involved and what is its impact?
- Research terminology and the research cycle.
- Management of trials.
- Medical statistics.
- Evidence-based methodology.
Feedback from attendees was overwhelmingly positive with many requesting more workshops in the future. However, we also wanted to know if attendees felt that the workshops had any longer-term benefits for them.
So, we got back in touch with attendees four to six months later and asked if attending the workshops had resulted in any noticeable effect difference in their ability to contribute to research.
We are developing a more complete report on this work, however, we can share some anecdotal quotes from participants relating to the impact this training has had on them. We have anonymised the names of attendees.
In general, attendees had a worthwhile experience and reported feeling valued:
Attendee 1: “Thanks for arranging these sessions, it made us feel you valued our input enough to train us, rather than use us just as 'token' patients because these are now required.”
Attendee 2: “Overall, I value the sessions because increased knowledge helps to build my confidence. I also value the opportunity to meet and listen to/ discuss with people who I would not otherwise meet. I think this is essential for anyone in a 'Public Voice' position.”
Regarding specific examples of how the workshops have helped, one attendee said the confidence gained through the session was beneficial to them in other roles:
“I am involved in patient experience work beyond the scope of your department. My increased confidence helped my successful application to [another related role] and my induction for a Public Voice role was this week. The introduction to ethics gave me the idea to tackle an inequality in health provision.”
One person who attended both the 2016 and 2017 sessions said, “In both instances the workshops provided me with information which means I am not constantly interrupting a [PPI] session to ask what something means, and therefore, slowing down proceedings.”
Another attendee spoke of becoming "became more keenly aware of the issues” after going home and delving deeper into ethics after their initial training session by downloading textbooks on the subject and using the additional knowledge to formulate questions at panel meetings
“Since the workshops I have assessed a batch of applications for research grants as a member of a charity’s lay assessor panel,” said another attendee. “I felt more confident about my judgements […] and some of the “jargon” was not confusing.”
She added, more specifically, that she felt now felt “comfortable in explaining my recommendations to the rest of the panel,” and went on to offer a couple of examples of this. “One applicant emphasised the co-production aspect of their research but had overlooked the need to run and pay for DBS checks for peer researchers."
Overall, we felt the experience was positive and useful for all involved and are currently planning (alongside our contributors!) the third iteration of these workshops.
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20 July 2018
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