Wouldn’t you want a say in the things which affect you?
Well, that’s what Patient and Public Involvement (PPI) is about – being an active, rather than passive, contributor to research. Helping to shape the design, delivery and dissemination of research.
But there can often be a barrier to getting involved in helping to design/guide research if you’ve no experience of it: knowledge.
This can be a problem because when you attend a meeting you don’t have the confidence to speak up, worried that everyone else understands something that you do not. It means that you waste time and energy trying to understand styles of research instead of being able to focus on the details of your project.
The delivery of the seminars by researchers put “a human face” to the work. The seminars were excellent, both content and delivery.
- Seminar attendee
I started as PPI coordinator for CLAHRC Oxford and the Nuffield Department of Primary Care Health Sciences, in Spring 2014. By autumn 2015 the number of PPI contributors we had on our books had grown by about 56 people.
So, with this growing number of PPI contributors on our books, many of whom had never been involved in PPI before, we decided to do what we could to help them be as ‘research ready’ as possible. Together with our PPI lead, Dr Sian Rees, and a number of our researchers we developed a series of training sessions.
Our aims for these sessions were threefold:
- to offer some connection with our research to those volunteers not yet linked to a study;
- to provide the sort of background information PPI Contributors have generally said that they would like; and
- to enable our PPI Contributors to feel more confident in their work on our studies.
We invited 84 PPI Contributors from our ‘pool’, based throughout the Thames Valley. 41 of these were new to PPI and had not yet been linked to any research project.
After a ‘working lunch’ with Rosamund Snow (Patient Editor on the British Medical Journal) and Jo Crocker (PPI researcher in Health Experience Research Group) to help develop my early ideas, I set the dates for five seminars to be held between January and May 2016 as a pilot project.
In the end, I opted for four topics and speakers, advertising that a fifth topic would be selected by the PPI Contributors themselves.
The titles were as follows:
- What is evidence? What is a randomised controlled trial? What is meant by the research cycle?
- What is the difference between quantitative & qualitative research?
- Understanding ethics and what is meant by informed consent.
- What is a systematic review?
- How can we work together to improve PPI? (based on attendee suggestions in Jan and Feb)
How it was received
There was a total of 83 bookings by 36 individuals. Overall, including those who couldn’t make it in the end, an average of 12-13 people attended each seminar.
As this was a pilot project, we knew we’d need to collect the feedback of attendees. This was to find out what we were doing right and what we may have been doing wrong.
Overwhelmingly, attendees reported that they were glad that they had come. They also strongly felt that the lecturer knew their subject well and imparted information clearly.
What some of the attendees said:
“Enjoyable and interactive – could have been very ‘dry’ but very interesting and informative.”
“A very interesting seminar – the time seemed to fly by and I could have stayed longer!”
“Perhaps some more information/examples about the concerns researchers and clinicians have would be useful. It would help us, as the patient/public, to learn what tensions/moral dilemmas they face.”
One person summarised their experience:
“Hopefully with improved learning and understanding my contribution to any research project would be similarly improved, i.e. through not wasting time going over “old hat”, and secondly a greater appreciation of how research needs to be conducted to secure funding, to achieve outcomes.
The delivery of the seminars by researchers put “a human face” to the work. The seminars were excellent, both content and delivery. When one has had a good experience one is more likely to disseminate the information with enthusiasm to others (improved recruitment opportunities), and to come back for more i.e. stay involved. It was a useful networking opportunity.”
All of the attendees were keen to attend more seminars, and they had lots of suggestions for possible future topics including:
- a researcher to talk about their research and how it is progressing;
- medical statistics;
- a lead researcher/investigator to discuss his/her views on the Patient & Public Involvement in clinical research – do they, in fact, welcome the contribution of PPI members?;
- management of multi-centre trials and the challenges that brings;
- follow up on ethics in PPI; and
- invite one of the lay representatives on the CLAHRC Management Board to see how they view PPI at that level and a Theme Lead to outline the CLAHRC research.
What about people that did not attend?
Some of the people who booked but did not come said the reason they had been interested was that “Research techniques and research language is very specific and sometimes impenetrable for the general public and as we know, fear of the unknown is a great divider.”
Some people did not book but said this was not because the topics were uninteresting, rather that they were too busy.
What did it cost?
Due to the willingness of our research staff to lead the lectures at no charge, the free venues, purchasing the refreshments at a supermarket and the fact that not all attendees chose to claim their travel expenses the cost for all five seminars was only £464.
So, what did we learn from this experience?
- Although two seminars were held in the early evening, to allow working people to attend, there was no evidence that these attracted more working age people.
- The seminars were arranged to last one hour, as academic seminars do, but this proved too short a time for the attendees and reflects the level of engagement they felt with the topics.
- 16 of those who booked were PPI Contributors who have not yet been linked to a project and it felt very positive during these months to be able to offer the seminars to new recruits.
- It would be good to offer this sort of opportunity to more organisations and PPI Contributors connected with other PPI roles in the Thames Valley.
- It would have been good to record how much time it took the PPI Coordinator to arrange the seminars, as it was significant.
- The venues, four locations on the Radcliffe Observatory Quarter, Oxford, all had some problems with them, such as temperature, access to toilets, or creating too much noise for research staff still working. The venues were chosen because they would be free, but we now feel this should be balanced against convenience for our PPI Contributors.
We also offer a free seasonal PPI newsletter, which you can find on the left of the page here.
To contact Lynne, please email firstname.lastname@example.org.