I recently asked on my twitter if anyone had any questions about patient and public involvement (PPI) and I got a few messages and emails with questions. I am going to divide my answers into two different posts. One post answering questions asked from a patient perspective and what PPI is like and then another post focused on how people can do PPI as I had a mix of questions from people wanting to get involved in PPI but don’t know who or what it entails and then questions about doing PPI from a researchers point of view. Before I start I do need to say that this is only my perspective and my experience. Everyone may have a different experience which is polar opposite to mine.
How do you get involved in PPI?
There are various different ways to get involved. I got involved quite by chance through meeting someone. Within some disease networks there are PPI groups such as the Asthma UK Centre for Applied Research has its own PPI group but there is also more generic groups such as one based at the Wellcome Trust in Edinburgh and also an NHS one in Glasgow. There are more groups around the UK which I am not familiar with but a google search does bring up a few different options. Visiting the INVOLVE website is a useful tool which has a list of PPI groups around the UK.
Do you have to spend a lot of time or fixed amount of time doing PPI?
With PPI there is no set time you need to spend. For me I spend a lot of time dedicated to PPI but that is because I want to and I go looking for things to do. When I am busy with other things I don’t take on so many tasks so less time is spent dedicated to PPI. It is very flexible and variable. In essence you can do as much or as little as you want and spend as much or as little time you want on each task.
What actually is PPI and what do you do?
PPI is very difficult to actually define and narrow to a precise thing. PPI is about working with patients to ensure the research being done is actually in the best interests of those with the condition and ensure it is applicable and not research being done for research sake. PPI is a collaboration between patients and researchers to achieve the best possible outcomes. This can be done several different ways:
- Co-applicant on grant applications
- Co-author on research studies
- Lay summary review to ensure the language used is easily understood by a lay person
- Reviewing patient information sheets, making sure they make sense and explain properly what the research is about and what is being asked of the participant
- Attend focus groups to discuss research ideas
- Sit on a steering group or advisory group
This is a short list of some of the things you can do but it is in no way a complete list. If you do not want to do any face to face PPI then that is ok as there is ample tasks which can be completed via email or virtually.
When I was doing my first bits of PPI I didnt know if I was doing it write or wrong. I was asked to review a lay summary which at first I was excited to do but once I opened up the document I suddenly thought I didnt know what I was doing and was worried I would do something wrong. I was concerned that a researcher had spent ages putting together the lay summary and I was going to comment on it. I felt I didnt have the right to do this as they were an early career researcher and I was just a patient. I was put at ease by another PPI member who explained that the language researchers use is totally different to lay language and they often don’t see how they should write to make it easy to understand because their language they feel is easy to understand. Over time as I have more experience I find it easier to make constructive comments and make improvements. Researchers who buy in to PPI are grateful for the input and help you give them.
Do you need to have a medical or research background?
No. I happen to have a nursing background but this is not required to be able to do PPI. Equally there is no qualifications required to allow you to do PPI. All you need is enthusiasm and motivation. Generally people get involved in doing PPI because they have a condition or are affected by a condition for which they way to make a difference and help. It helps to have experience of the condition you do PPI for although not essential. I find my experience of having asthma means I understand the needs of those with asthma and where research is needed and what is applicable to those with asthma.
Why is PPI done?
PPI is done for several different reasons. It means research is being done for or with patients rather than to or about patients. It keeps research real. It can influence what research is done and how it is planned. It can also help improve the experience of the future participants in that research because you have been able to identify where needs have not been met or where there may be a flaw in the study design which may limit the number of participants recruited.
What are the good bits about doing PPI?
It is difficult to note down all the good bits as there are so many but for me there is personal gain to doing PPI and also the gain to the researcher. PPI fills a gap for me. Going part time at work meant I was left with a lot of dead time where I would sit thinking I should be working but wasn’t able to. Instead PPI slots in nicely and gives me a focus to my down time and something productive to do.
One of the other really positive parts of PPI which I really enjoy are seeing the change in researchers. I have had experience a few times where researchers don’t buy in to PPI and therefore do the minimum amount of PPI that they can get away with. However spending time with the researchers who don’t embrace PPI and help them to understand how PPI works, the benefits of PPI to their research and seeing their attitude towards it change is so rewarding. Its just about recognising that not everyone knows what PPI is, understands it or knows how to implement it.
Have you had a negative experiences?
I have been lucky in that I have not had many negative experiences being involved in PPI. There has been the odd occasion where I have felt that PPI was being done because it had to be. It makes it a uncomfortable experience, much like when you are in the company of someone who doesn’t want to be there. I have learnt over time now and experience to challenge those when I am put in that situation and ask why they don’t embrace PPI and if there is anything I can do to help change their opinions or make it easier for them.
What happens if you don’t agree with what is being done?
I have never been in a position to not agree with what research is being done but if I was I would probably just not volunteer to do any PPI on that piece of research.
Do you get paid for what you do?
Not really. You may receive a gift voucher for what you have done as a token of appreciation from the researcher but this is mainly when you are required to attend face to face tasks rather than virtual tasks sent via email. If you need to travel to attend things you are able to claim back travel expenses but it is generally voluntary. I wouldn’t want to be paid for what I do as I really enjoy it and I feel that PPI has given me so much that I wouldn’t have had and it has really helped me.
There are more questions which I am sure people may have and if you do please comment on this post and I shall answer them. This is just my opinions and answers to the questions asked, others may have different answers.
As you may be able to tell I love doing/ being involved in patient and public involvement. I would really recommend to anyone thinking about it to jump in and get involved. If you try it and find you don’t like it then there is no obligation to keep doing more but if you do like it you can do as much as you want.
I will do another post with the questions which are more geared to researchers in a week or so.