I owe a lot to research. Thanks to an immense number of dedicated researchers, I have access to reasonably effective treatments for my Parkinson with (so far) manageable side effects. And of course we need more research, in all diseases and on all levels of health and healthcare.

But, is the current process for how research is being undertaken ideal to achieve the best results? I think improvements are urgently needed and here’s why:

I don’t doubt for a second that researchers are dedicating all that time for all the right reasons: they want to help people and improve health and healthcare. But what does the system look like? Well, if you’re a researcher, or even just a doctoral student like me, you know very well that your work is rated to a large extent based on publications. And of course, that would be all good and well, assuming that scientific journals make sure that they assess that submitted articles address research important to patients. To my knowledge, to date, only the British Medical Journal actively asks researchers to what extent patient input has influenced the research reported in the submitted article (as described in this article about their strategy for patient partnership).

I was very happy to read about the Australian government’s proposed changes to the process of research funding earlier this year (link here), where they suggest more emphasis on “engagement” and “impact” over publications. As far as I know, the details of the proposed changes are not clear yet, but I am carefully optimistic.

Most research being done to date, is primarily done for the sake of research, secondarily for the sake of healthcare, and thirdly, if at all, for the sake of individual patients. This is a result of the very complex weave that makes up the current research process. And I am not saying that good or even great research cannot come from the current research process. I am however convinced that we would all benefit from a complementary research paradigm, taking the individual patient as its starting point.

Research being done for the sake of research may be good, but it’s not enough!

During the last few years, I have been thinking a lot about healthcare, which could be seen as strange, since I actually don’t use a lot of healthcare. If you’ve ever seen me present at a conference or watched a video of me, you have probably seen my “picture-with-all-the-dots”, so you know that I see my neurologist only one hour per year. And I am actually quite a healthy person, apart from the fact that I have an incurable progressive neurological disease, so I don’t go to other physicians a lot either. All in all, on an average year, I probably spend 2-3 hours in a doctor’s or nurse’s office for my own health.

So why am I spending so much time thinking about healthcare, what the current problems are and how to make it better? Well, the main reason is probably that I want to improve the system for my own sake, so that when I need more help, the right help is available. But I am also doing what I do because I believe that I have a responsibility to contribute in the best way I can to making the world a better place and it seems that this is an area where my efforts seem to have a good effect.

My work these last few years has given me the pleasure of meeting a lot of fantastic people, people who, like me, are living with substantial health challenges. And I have realised that all of us have one thing in common: instead of adhering to “the system’s” idea of the best way to organise healthcare for our particular disease or condition, we have all taken things into our own hands and organise our own “health management  system”. This often include aspects that is not always considered part of the healthcare system.

The organisation of what you need to manage your health in the best way is also the theme of a recent Personal View that was published in the British Medical Journal, written by Kenton Unruh and myself. In the article we describe the work we both do to make sure we get the care we need for our Parkinson’s disease. The main points of the article are:

• Assemble the best team – we have both identified and assembled the clinical expertise we need to ensure access to the support we need in managing our complex needs.
• Manage information efficiently – we gather information prior to visits using a single page colour-coded summary of current medication regimen, clinical status and questions and/or a prototype of a smartphone app.
• Evidence or opinion? – to ensure optimal decision making, we ask our clinicians to indicate if the information they provide is based on scientific evidence or general clinical practise.
• Coordination between visits – we acknowledge that we have the biggest interest and the best possibility to be in possession of the full picture of our health and therefore take it upon ourselves to be the carrier of information between visits and clinicians.

We are aware that we are taking on tasks that could be considered to be the work of the healthcare system. However, we find that our approach enables us to optimise the outcomes of our healthcare interactions and also to use our own time more efficiently.

Let’s help ourselves by working together to improve healthcare systems: patients, clinicians and healthcare organisations!

In September I will be attending one of my favourite conferences for the third time: Stanford Medicine X! It is the most patient-inclusive conference I have ever come across and always full of people generously sharing their stories relating to medicine and health.

This year I will participate in a panel discussion titled “Going from researching patients to patients researchers” together with the wonderful Susannah Fox, the inspiring entrepreneur/patient Michael Seres and the amazing Eli Pollard. In the panel, we want to discuss how patients’ opinions, knowledge, and experiences can make the whole research process better; from formulating the research questions, to designing, recruiting, and implementing the research as well as disseminating the research results.

We also want to discuss how patients who manage our diseases every day are actually testing hypothesis more or less consciously. Can the knowledge arising from that be captured and disseminated in a structured way?

To start us off in preparing for the panel discussion this September, we want to hear from you! Could you tell us about your experiences?

What do you (or your loved one) do to manage your disease/condition/health challenge other than what you are told by healthcare to do?

Please comment below!