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Scientific and lay authors writing together

Lynne Maddocks, NDPCHS and NIHR CLAHRC PPI Co-ordinator, interviews Dr Richard Stevens, Associate Professor of Medical Statistics and lead author of a recently published scientific paper co-authored with public contributor Elizabeth Holloway. The paper, published in CMAJ, argues for a re-think in how doctors talk to their patients about kidney health, suggesting it should be about ‘kidney age’ not ‘kidney disease.’

This article originally appeared in PPI Pulse - the patient and public involvement newsletter from the Nuffield Department of Primary Care Health Sciences and the NIHR CLAHRC Oxford.

Dr Richard Stevens, Associate Professor of Medical Statistics, University of Oxford

Richard Stevens

Who were your lay co-authors?

They were Elizabeth Holloway and Marion Judd.

Why did you have lay co-authors?

Without them, this project would not have happened. We were funded by the National Institutes of Health Research to study the way chronic diseases, including chronic kidney disease, should be monitored in UK primary care. Early challenges in the research suggested there was a communication problem between doctors and patients with declining kidney function.

Our PPI representatives encouraged us to recognise this problem and inspired us to propose a possible change of terminology – hence the title of the article. Two of our PPI representatives remained active throughout the development of the article, and so these two are credited for their role as co-authors. In common with all medical research projects in the UK these days, we had also included patient and public involvement in the governance of our programme of research.

What do you feel were the advantages of having lay coauthors on this paper?

Put simply, the project would not have happened without their encouragement and insight!

Would you do it again?

Of course! We will continue to listen to lay voices when designing research, and after the success of this project we will always be open to the possibility that this will lead to lay co-authorship.

It's not the letters after your name that count in science, it's the contributions you make." - Dr Richard Stevens

What did your lay co-authors say about it? Would you have named one of your PPI Contributors if the other one had not wanted to be named? What issues might this raise for the team?

Both lay co-authors (who are part of a bigger stakeholder group) met the established, internationally accepted criteria for authorship of a scientific article: so of course, we listed them as co-authors. I suppose either or both could have declined to be named if they had wished, but they both deserved credit as co-authors so I’m pleased they accepted it.

You published in the Canadian Medical Association Journal - would it have been different if the journal had been based in the UK? Would it have been different if the article was open access?

The rules of scientific authorship are international, so the same would have happened in the UK, and whether the journal is open access or not. The journal has given permission for us to make the paper is freely available through the Oxford Research Archive (ora.ox.ac.uk).

Both of your lay co-authors have PhDs. Would you have asked them if they had not?

I don’t think I knew this until very late in the day – when getting names and contact details ready for the journal. They did not contribute to the paper as scientists or whatever their PhDs were in; they contributed as patients, and that was invaluable and inspirational. It’s not the letters after your name that count in science, it’s the contributions you make.

What does “conceived the analysis paper” mean?

The paper is not a single study, but a reasoned argument based on analysis of the current state of knowledge. We looked across papers in statistics, medicine, social science and even philosophy to construct our argument. Very few journals have room for a paper of this type and we were glad CMAJ agreed with us about the importance of the argument.

As a result of working with lay co-authors from the very outset on this project, did your thoughts about the research question change, and if so, how?

We were (and still are) working on different, but related, research questions, when early findings and challenges suggested this line of research. The lay co-authors encouraged us to take the issues seriously and gave us confidence in pursuing it through to a manuscript that proposes a possible solution.

Given your experience of publishing with lay coauthors, what recommendations would you make to researchers who are considering this in the future?

When circulating early drafts of your manuscript with your co-investigators, consider circulating them to your PPI representatives too, to see if they have valuable contributions to make to the writing process.

The NIHR has recently launched a new set of national standards for public involvement in research. Based on your own experiences, how can institutions embed a culture of practice where including lay co-authors is the norm, rather than the exception? 

We already have a culture where lay involvement in research design and conduct is the norm in clinical research, so co-authorship seems like a sensible next step.

However, the International Committee of Medical Journal Editors recommend that authorship is merited when – in addition to substantial contributions to the research – additional criteria are met, including accountability as well as contributions to the writing. I wouldn’t want to impose on PPI representatives a “norm” that they take on this additional burden, but I am grateful to my lay co-authors for taking it on in this particular case.

Your paper reflected the patient’s perspective on this issue, but your recommendations more specifically impact on how GPs and other health professionals communicate with patients who have kidney disease. Other than co-authoring with academic GPs, how did you consider the perspective of GPs at the coal-face?

We set up a stakeholder group that included two GPs, a nurse and pharmacist as well as patient representatives. There were some concerns that the patient voice would be diluted by this, so we expanded the number of patient representatives so that they dominated the group.

The whole group was supportive of this project, but it happened to be two patient representatives who stayed with us to the end of the writing process.

Elizabeth Holloway, Patient and Public Contributor

Elizabeth HollowayDo you feel there were any advantages to you in being a lay co-author? If yes what were they? Would you recommend it to other PPI Contributors? If not, why not?

Certainly, there were a number of important advantages for me.

For the past few years I have been unable to continue with my own post doctoral research because of caring for my husband. I miss being in a research environment, being involved with the medical research process and interacting with various members of departments. Being aware of research areas and projects being undertaken is fascinating. Being a PPI contributor enabled me, at least to a minor degree, to feel involved and hopefully make some useful contributions from both a patient’s and carer’s perspective and as a former researcher and clinical physiotherapist.

For the past few years I have been unable to continue with my own post doctoral research because of caring for my husband. I miss being in a research environment, being involved with the medical research process and interacting with various members of departments. Being aware of research areas and projects being undertaken is fascinating. Being a PPI contributor enabled me, at least to a minor degree, to feel involved and hopefully make some useful contributions from both a patient’s and carer’s perspective and as a former researcher and clinical physiotherapist.

Furthermore, the team in Oxford made us feel valued; everyone was most hospitable, and we were encouraged to develop our ideas from our different perspectives. I was made to feel that I did have some perspectives and ideas to share from my own experiences and I believe other PPI contributors found their experiences valued.

I would certainly recommend anyone with some spare time and an interest in medical research and their fellow being’s health and welfare to become involved with PPI and contribute to the research process.

I would certainly recommend anyone with some spare time and an interest in medical research and their fellow being’s health and welfare to become involved with PPI and contribute to the research process.
- Elizabeth Holloway, Patient and Public Contributor

Have you been a lay co-author on any other papers and if yes was that experience any different? 

I have not been a lay co-author before. However, I have been a co-author on papers where I had more clinical and research knowledge, responsibility and input.

Being a PPI co-author in the Oxford CMAJ paper was a much more pleasant experience – without the worry! We contributed ideas and read and commented on the various iterations of the paper as it developed but we did not have all the hard work of writing up and attending many meetings making decisions - which are an inevitable part of the research process and also undertaking the publication process.

It says you “revised the manuscript critically for important intellectual content, gave final approval of the version to be published and agreed to be accountable for all aspects of the work.” How much time did it take, and did you enjoy it?

It is only possible to revise a manuscript critically from one’s own perspective, knowledge and ability. Yes, I enjoyed seeing the paper evolve and reading and critiquing the various iterations.

It’s difficult to assess how much time it took as it was an intermittent exercise over a period of time. Some weeks it would be difficult to fit in even an hour or two and other weeks I could spend more time reading, referring to Healthtalk.org and other sites and thinking about the work and its impact.

As a result of this piece of research, what do you hope to see change in how doctors talk to patients about kidney disease?

This research should help to guide and reassure doctors when communicating with those patients who do not have any apparent disease process or pathology related to their kidneys but whose kidney tests reveal that they are not fully functional because of advancing age.

It is assumed that rigorous tests will have excluded any disease process and regular checkups will take place. This paper should then reinforce and encourage practicing doctors to use the term ‘kidney age’ rather than ‘disease’ when informing patients about their blood tests and kidney function status. The Table accompanying the paper illustrates this well and I hope it will be enlarged and utilised to demonstrate to patients and enhance their understanding – when appropriate.

Personally, I find the Table most helpful. Healthtalk UK highlights kidney patients’ reactions where the word ‘disease’ can engender fear, anxiety and worry (and often apprehension in the doctor). These measures should help to reassure patients who will then leave the surgery with increased understanding and confidence.

However, they will have been informed that they should return if they have specific concerns which the doctor will have detailed and the usual regular checkups should still take place. It may all take a little longer than the usual consultation time of ten minutes.

I understand that you will now have seen some of the publicity around the paper. How do you feel about being part of that?

I’m very appreciative that I’ve been able to see this work come to fruition and was given the opportunity to be part of it and to share in the research and planning at regular intervals. It is great that I have seen the final published version and been publicly acknowledged - which is a boost to morale especially when being a carer.

Thank you to a great team!

 

Read the full research article here: "kidney age, not kidney disease".  Richard J. StevensJulie EvansJason OkeBenjamin SmartF.D. Richard HobbsElizabeth HollowayJeremy HorwoodMarion JuddLouise LocockJulie McLellan and Rafael Perera. CMAJ. DOI: https://doi.org/10.1503/cmaj.170674

Opinions expressed are those of the authors and not of Oxford University. Readers' comments will be moderated - see our guidelines for further information.

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