“But Sara…”

“But Sara, why would patients want to do research on themselves anyway? Isn’t it better if you all just give your data to a proper researcher?”

I think that those who know me will agree that I am not often lost for words. However, when the question above was posed to me, I can definitely say that I didn’t know what to say for, what at least felt like, a really long time.

This happened almost a year ago. I had been a doctoral student at Karolinska Institutet (KI) since 2012 when, in September 2018, my plans to defend my doctoral thesis were suddenly interrupted by a decision by the Dissertation Committee at the university, see a previous post here. In the wake of the Dissertation Committee’s decision, I was involved in numerous discussions and meetings and one comment in particular has stayed with me. During one of these meetings, a professor at KI turned to me and asked me a question. I think he definitely did not intend to offend, he genuinely wanted to understand. He said:

”But Sara, why would patients want to do research on themselves anyway? Isn’t it better if you all just give your data to a proper researcher?”.

This professor works at the same department as me. He has seen me in the corridors and lunchroom at least these last 5-6 years and I have been a student in his courses. We have discussed my research on several occasions and I had the impression that he was interested in what I was working on. It took me a second or two to process his question. What did he really mean?… What is a ‘proper’ researcher anyway…?. What did he think I had been doing for the last few years…? Did he mean all patients or just other patients than me…? Maybe this was his way of testing my academic reasoning skills…?

In my reply, I think I ended up trying to explain how, in chronic disease, there is a lot of learning involved for us patients. Also how, since our diseases are with us 24/7, for the most part, we are our own main care provider. And that, when living with a complex chronic condition, we really have to become a bit of a researcher to be able to be vigilant of new symptoms, optimise our treatments and to communicate effectively with healthcare when needed.

I’m not sure he was able to follow my reasoning, which to be honest, probably wasn’t really at its peak, as I was struggling to make sense of his potentially well-meaning question. Now, almost a year later, I have decided that it is time to share what happened and my comments to it all more widely.

1. All research is not equal

Of course, I am fully aware that research is a very wide field. The figure below is an example of one way to categorise some of the different aspect of the so called “Translational Pipeline”, for more information, see link to the source website here.

The model above, or some variant of it, is commonly used to illustrate the path “from bench to bedside”. This refers to how new medical treatments go from discoveries in the lab, via experiments on cells, animals and human subjects, to being more generally available to physicians and patients. The figure above also contains policy and practice but there are more aspects of research that are not included in the figure.

In my opinion, patients can make contributions in all parts of the research process. For example by making sure that outcome measures or clinical endpoints in trials are chosen so that they are relevant to patients needs. If you want to know more on this topic, I recently wrote a blog post on what I believe are some key aspects of patient-centered research, see link here.

Patients researching themselves probably have less opportunities to contribute in basic research. However, there are some very interesting examples of patients who have taken things into their own hands, also in basic research. Some examples can be found in my recent post but I want to add David Fajgenbaum (follow him on Twitter). David is an MD who was diagnosed with a rare condition called Castlemans disease and he has been taking the lead in curing his own disease. See a video about him here.

2. But what do we mean by “research” and what is “a proper researcher”?

Research can mean many things but in this context, I will assume that his question implied scientific research. A scientific paper from 2016 (see reference below) states that scientific research is: “research conducted for the purpose of contributing towards science by the systematic collection, interpretation and evaluation of data […] in a planned manner”. The same paper also states that: “a researcher is the one who conducts this research”.

I would also add dissemination as an essential part of scientific research. In academic research, conventional dissemination of research results often means to publish the conducted study in a scientific journal, preferably with an impact factor that is as high as possible. Increasingly however, that model for communicating scientific results is being questioned and alternative routes are being explored in different ways.

By this definition, I would say that the work many patients are doing when we evaluate our own response to our treatments by systematically observing or tracking different health parameters, should be considered scientific research, at least if the results are somehow communicated so that the work done can also contribute to science beyond our own learning. It then follows that patients conducting research on themselves would count as “proper researchers”.

Reference: Çaparlar CÖ, Dönmez A. What is scientific research and how can it be done? Turkish J Anaesthesiol Reanim. 2016;44(4):212–8.  Pubmed link

3. Research needs to change – completely and fundamentally

There is a very hard glass ceiling in scientific research. Patients are not generally considered equal partners in healthcare or research. I would even go so far as to say that patients are not even considered a part of research, beyond our role as research participant, i.e. as a data source. It’s almost as if, as soon as a “proper physician” diagnoses you with any kind of health-related issue, you immediately loose all your previous knowledge and competences and you become completely unable to make any sort of objective analysis of your own body. In my opinion, this needs to change, completely and fundamentally, mainly for democratic reasons.

The Universal Declaration of Human Rights (UDHR) consists of 30 articles outlining individuals’ rights in different domains. The document was adopted by the United Nations General Assembly in 1948 and even though it is not legally binding, has been shaping a lot of the work in human rights since then.

Article 27 of the UDHR states:

1. Everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits.
2. Everyone has the right to the protection of the moral and material interests resulting from any scientific, literary or artistic production of which he is the author.

This article has traditionally been taken to mean that scientific progress should benefit all of humankind but a scientific article from 2015 by Effy Vayena and John Tasioulas (see reference below) takes the interpretation further. The authors argue that article 27 should be read to also include the right to be recognised as a citizen scientist, meaning that “citizens themselves take the lead in initiating, designing and conducting a project—a type of activity that has come to be known as participant-led research (PLR)”.

It should come as no surprise to regular readers that I can completely relate to the interpretation of article 27 by Vayena & Tasioulas. But unfortunately it seems as if I am a bit ahead of my time.

Reference: Vayena E, Tasioulas J. “We the Scientists”: a Human Right to Citizen Science. Philos Technol [Internet]. 2015;28(3):479–85. Available from: http://dx.doi.org/10.1007/s13347-015-0204-0

My conclusion

I am thankful to the professor who asked me this question. It has lead to me reflecting on some fundamental issues around research in general and my own attempts at contributing in particular. If what I have been doing for the last few years doesn’t even make sense to him, maybe it’s not surprising that the Dissertation Committee of KI said no to my application to defend my thesis.