Organising your own “health management system”

Personal View published in BMJ ( “Patients organise and train doctors to provide better care” by Sara Riggare and Kenton Unruh.

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!


  1. Thanks for a great post! Very inspiring! What would your most important advice to clinicans and health care orgsnisations be?

    1. Thank you Olof, very glad you like it! I think that the most important thing clinicians and healthcare organisations can do is to have the courage to truly engage with patients in new ways. Both healthcare and patients needs to change our attitudes and to be able to do that takes courage and education.

  2. Sara
    It’s great to be talking about this ?. Your piece brings up lots of issues and thoughts such as you mention in your reply to Olaf…..

    What I’m thinking about now is how to achieve this in varying contexts.
    As well as clinicians being responsive and both parties being open to engage all this takes a certain amount of knowledge, courage and confidence by the PwP.. Plus we need a health care system that has the resource people as a part of it to assemble a health care team.
    Of course some people will have the personal resources to do it alone but I’m thinking most will want/need some kind of support structure if they are advocating for themselves within the institutional structures.

    If only we already had multi disciplinary teams as the expected norm for PD treatment and oversight.

    1. Thank you Dilys, great points! It is indeed a problem that healthcare systems are not organised according to the evidence supporting the team based care approach for many chronic diseases. And we cannot wait until they are, right? My hope and belief is that the ones of us that have the capacity, interest and ability to organise “our” care in the way we think best, will be able to influence the design of care as well as the speed with which change is driven forward.

  3. Yes but I’d like at least one of those professionals co-ordinated the rest. With me my GP has retired, my consultant moved away, transferred to new one who went promptly onto maternity leave and is coming back form my next appointment. Oh ye her maternity cover was her old colleague back for two days a month. The only bright side are her research interests but probably would not work with a patient for ‘ethical’ reasons. I feel that my care would be better if someone cared about my care. Oh and my DBS is being undertaken by the specialist hospital 60kms away (and a whole other team). At least that hospital is the hospital that ‘cured’ MS yesterday.

    Anyway, I’ve got two support workers from two different charities trying for help so I can get some care so I can concentrate on my work.

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