In my blog I have spoken a lot about PPI or Patient and Public Involvement but what does it mean?
When hearing the term PPI (apologies for the big assumption) most people will automatically think “payment protection insurance”. I must admit I first thought this when I first heard the term PPI. You hear and read about PPI everywhere and commonly associated with the annoying phone calls you get from unknown numbers between 5:30 and 6:00pm at night.
If you were to google the term PPI you would need to scroll through 4 pages of sites all about payment protection insurance bar one suggestion which on the fourth page is for another sort of PPI- this one being a proton pump inhibitor to help with acid reflux. One the fifth page right at the top I finally found a result talking about another kind of PPI. The kind of PPI I do.
The PPI I do and am involved in is nothing to do with payments, money or insurance but is Patient and Public Involvement in research. It is a source of information which can give the opportunity to researchers to have their project stand out from the rest.
(I am not an academic so forgive me if I am generalising too much)
Researchers will often have a project in mind that they wish to do, or a question they want answered that can be achieved by conducting research, but if the research is to be really worthwhile, it needs to influence those they want it to – patients, families and health professionals. Having patients or public involved helps to ensure that the research question, and entire research process remains focused on what is important to people with asthma and therefore the results obtained can hopefully make an impact or health improvement in the person’s life.
It is important for researchers to remember that PPI is not about participant recruitment to a study.
If like me you can’t take part in clinical trials or you just don’t want to be a guinea pig but want to do something worthwhile which could potentially make a difference to the life of someone with asthma then PPI could be for you.
Visit http://www.aukcar.ac.uk to see what the research priorities of the centre are and what sort of research is happening. On the page ‘How to get involved’ there is an email you can use to send in your interest and join the PPI group which is just about one of the largest PPI groups worldwide for asthma research (I think- but I may be wrong, it is certainly up there)
I get emailed every now and again by either the research fellow co-ordinating all the PPI volunteers or by the PPI lead for AUKCAR with various different requests for my advice. Some examples of the things you may get asked to do are:
Lay Summary Reviews: most research proposals need to have a lay summary – – a summary written in plain English rather than using more complex English and technical terms which are foreign to just about everyone other then those involved in research. Carrying out a lay summary review is to read it and comment where something may not be clear, or you are not sure of what something means, or abbreviations have been used with no explanation of what they are. They are often in word documents so using the comment tool is good to show bits you’re not sure of. All responses from PPI members are collated by staff at the Centre and fed back to the researcher.
Patient Advisory Group: where you will be involved in the research process right from the start. I am in a few of these and they commonly have perhaps 2 face to face meetings a year with the researchers in the study and then email correspondence or teleconference calls. Again you are asked to comment on lay summaries, patient information sheets, or are even asked about any ethical issues you perhaps might think there may be. I have only got this far in any Patient Advisory Groups I am in just now but as the research progresses I will give my opinion on the results and other bits I am not quite sure of yet!!
PhD Review Panel: in AUKCAR there are a number of PhD students and PhD projects that are put forward to try and win a grant and get funded. You can sit on a review panel and read the various PhD proposals and again comment on bits you think make sense but most importantly if they have a good plan for using PPI throughout the piece of research. You make comments by email first, then a face to face meeting or teleconference with others on the panel takes place to discuss what you all thought and then this is fed back by the PPI Lead for the centre.
Patient Information Sheets: information in these is so important – they explain a research study to people who have to decide whether to take part in the research. Having a lay person (non medical or academic) review the information sheets to ensure they are understandable to those recruited and make sense explaining every part of the research and how the participant is going to be affected and what is expected from them. I have done a few of these and have found the researchers are so grateful for any comments that make them easier to understand.
Help design a piece of research: Opportunities arise where you may be able to help in designing the study right from the start and what the aim is and the best way of sourcing the information the researcher wants. I am involved in something like this just now where I am helping to work out different ways of getting the information we want and the various methods we can use for it.
Publish an article yourself: I have recently written a short article for the British Medical Journal for a patient series called ‘What is you patient thinking?’ which is meant to be a learning tool for Drs to make their practice better. Naturally I have written mine about attending Accident and Emergency having an acute asthma attack. I have written it highlighting ways which it could perhaps be made easier and a more pleasant experience.
There is a very wide range of things you can be involved in and in a variety of different ways. You can do as much or as little as you want. Emails come out with requests but you don’t need to do all of them unless you want to.
The team in AUKCAR are fantastic and really supportive. If you’re not sure about something they are always there to give you answers to any queries you have. My first ever thing I did as a PPI volunteer I was really nervous about what was expected and what happens if what I write is wrong- but nothing you write is wrong. It is all helpful suggestions. My comments have varied from comments all over the pages and I felt I had gone over the top but then others where I didn’t have any comments. The researchers don’t find out who has said what unless you respond to them directly then they see from your email but they never discuss what you have written or question you about it.
You may probably guess I really enjoy being part of AUKCAR and being a PPI Volunteer so I would definitely urge anyone who might be interested to get in touch and give it a go. If you decide it’s not something you want to do after trying it then that’s ok – it’s not for everyone.
Big thank you to PPI Lead reading this for me first!
(I do want to say this post is just my own and am not being asked to write it and not gaining anything from it if people do decide to join the PPI Group at AUKCAR.)