The short answer is NO and there needs to be a big changes for that to happen.
I have actually written this blog post twice. The first incarnation was me getting my feelings off my chest but I decided not to post it as it would not be helpful to anyone. Instead I have decided to use this blog post as a learning experience for both patients and academics.
I hear so often when sitting at a table with academics who want to co-produce, co-design, co-author research that the patient or lay role is an equal part of the research team. The value of the patient is the same as that of the statistician or methodologist but it really is not.
As a patient you don’t know the real ways in which the academic world works until you experience it yourself. I always thought I was an equal part as I was listened to and my ideas would contribute to changes in the research question or the research design. Then once the research has been done it will be presented at various conferences or it will go forward to be published in a journal.
It was only recently that I realised that as a patient on the research team and as one of the key team members you have no power (you will also often hear about the power relationship in PPI) no matter how much work you put into the study the end of the day is that you have no standing.
I use myself and a recent experience as case study of where the patient has no standing or authority at all.
ELEVATE- Evaluating the Impact of Patient and Public Involvement in the Asthma UK Centre for Applied Research
- Late 2017 discussions started about how to measure the impact of PPI in the Asthma UK Centre for Applied Research
- I was a key member of the research team, helped determine the research question, study design, questionnaires, interviews.
- Helped write the first draft of the report
- Presented at several conferences about ELEVATE, presenting why we did the study, the results and what this means for PPI.
- On poster presentations and oral presentations I was 3rd author or first author if I was the one presenting
- 2 key members of the research team retired
- Publishing ELEVATE was one of the key discussions when we first set out with this project because evaluating PPI is essential and measuring the impact of PPI is very difficult so we felt publishing the study was essential because we used a unique method and the study was do-designed
- 2021 ELEVATE is still not published despite my best efforts but I am no longer part of AUKCAR
I didnt realise how little standing a patient has. If an academic moves to a different institution they still have the ability to publish work they have done. As a patient I have realised that because I have no affiliation with an academic institution I have no standing in getting this work published. Right now I feel like the project was a waste of everyones time and energy. The study was originally done because there is much pressure put on academics to show the value that PPI has to research to ensure that there is adequate funding for PPI. What is unique is that the original team worked very well together and we could dedicate the time to really making sure it was how we wanted it. My views were heard and obviously there were compromises made, as a patient or as a member of any team you will never get your way all the time unless you are a team of one.
It frustrates me that being a patient and working on a project I still have no standing or ability to try and get something published. Those with the powers to publish the paper keep pushing it down the agenda deciding to focus publishing work that they think is better or to placate other patients who have co-authored work. I am so frustrated that I did not make more of a fuss about getting it published. I recently contacted AUKCAR about getting it published but was told it was not on the agenda and not applicable to what they are doing. I suggested I look to publish this myself but it was met with silence. I have all the data and the first draft of a manuscript so have the ability to put something out there but I cant because legally one of the universities owns the research.
It is really frustrating because it highlights that no matter who says patients are an equal part of the research process we are not. One of the problems in life is that we never see the down falls until we experience the down fall. This situation has highlighted to me that there needs to be some security for patients who are co-designers, or co-authors of research.
I think what frustrates me the most is that as patients we can be swept aside so easily. I have no power to do anything with this piece of research. I am however conflicted because after having a very nasty experience and subsequently leaving AUKCAR I do not agree with the results of ELEVATE, but we cant give up on something just because we don’t agree with results, but on the other hand I really want to get the study published because of the methods we used and the various different stakeholders we addressed with our study. When presenting I had so much positive feedback and would get messages from people asking me questions about ELEVATE after I had presented it etc. It is because of this I really want it to be published and enhance the studies that have already been published surrounding evaluating PPI in research.
What changes can be made, is there a way to stop this happening in the future to ensure that patients who have an integral role in the piece of research get the end goals that were set at the start despite changes in the study team. I don’t think there is unless as a patient we can have temporary affiliation to an academic institution while we are heavily involved in a project. I doubt any institution would be onboard with this. But it highlights the inequalities that patients or lay people have when it comes to research.
Going forward I think I will make sure there is some sort of conditions on me being involved particularly as a co-author or co-designer of a study. I do not want to prevent academics from doing PPI or working in conjunction with patients but they need to be aware that no matter how much they say the patient group is a key member of the team and is an equal we will never be an equal and will never have the power, tools that they have. It is disappointing that this happens but it is a learning experience in which I hope will not happen again.
I still hope that ELEVATE will be published and published soon as it has been sitting for so long. I somehow doubt I will be involved in the writing and publication but as long as it can get out there so others can see the ways we decided to evaluate patient and public involvement.