Wednesday, 20 December 2017

A revolution: participatory medicine

‘‘Before the Internet, when first diagnosed, I depended on my neurologist. His opinion was the final say about everything from use of steroids to physical therapy to which disease-modifying medicine I would use. The Internet empowered me as a patient to become informed about my condition, to consider my options and the opinions of others, and to take charge of managing my disease in the best possible way for me.’’

How important are the internet and social media to you in managing your MS? 

I started this blog about 8 years ago to address an unmet need in my clinical practice. In response to spending most of my patient's valuable face-to-face clinic time interpreting MS-related internet content, debunking anti-science movements and putting MS research into context I decided to do it online and for everyone. 

The aim was to post once on a topic and then to refer all my patients to the site and they could then ask questions and I could answer them. Since then the blog has become more than that. We now get many different MS stakeholders coming to the site for our interpretation of things MS. As a result of this we have tried to be too many things to too many different people. At its heart, 'this blog is for people with MS and their families'. In response to recent feedback, we are trying to refocus our attention on this core mission. We want to keep in simple, to keep it varied and to try and not overload you with content! 

The following opinion piece on participatory medicine is very timely and address several of the issues I have alluded to above and in the past. I know Jeremy Bright very well and he is an A* writer; one of the best in the field. I have worked with him on many articles in the past and he is an uber professional. He takes the definition of participatory medicine to the next level. 

We are living in an era where knowledge is been rapidly democratized and most people have access to the same information as everyone else. This means people with MS can rapidly become experts in their own disease and use their expertise to challenge their HCPs positions and biases. I would recommend reading this article and starting a conversation with your HCP. 

We would also like you to help make this blog more participatory. If you are interested in a particular topic or hearing from a particular HCP or scientist please contact them and ask them to write a guest blog post on this site. We have created a platform that has a large readership and we want to open this to new voices. Our email is

In fact, I am going to ask Jeremy Bright to write a post for us. Do you agree?

Kantor et al. Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and Participatory Medicine. Neurol Ther. 2017 Dec 8. doi: 10.1007/s40120-017-0088-2.

When faced with a diagnosis of multiple sclerosis (MS), patients often turn to the Internet and social media to find support groups, read about the experiences of other people affected by MS and seek their advice, and research their condition and treatment options to discuss with their healthcare professionals (HCPs). Here, we examine the use of social media and the Internet among patients with MS, considering its impact on patient empowerment and patient participation in treatment decision-making and MS research. These themes are exemplified with first-hand experiences of the patient author. We also explore the impact of the Internet and social media on the management of patients from the perspective of HCPs, including new opportunities for HCPs to engage in participatory medicine and to improve communication with and among patients. We consider both the benefits afforded to and the potential pitfalls faced by HCPs when interacting with their patients via these routes and discuss potential concerns around privacy and confidentiality in the use of the Internet and social media in the clinical context. Communication online is driving the evolution of the patient-HCP relationship, and is empowering patients to participate more actively in the decision-making process relating to the provision of their health care. 



  1. You have mental health issues as you are addicted to the net on many sites .Please get help soon.

    1. Who are you referring to?

    2. Oops this should have gone to spam. This is where most of these types of posts, generally from our mate in Leicester.

      Other posts from this week

      "Splifheads like you speak utter rubbish and suffer with paranoid attacks get yourself help soon because the truths are going to come out about you soon".

      "MASS murderers is what you are all known as"

      "MS in UK is all dysfunctional the ones who are supposed to be working hard helping MS many need to be sacked all of you at Barts need sacking this will happen one day and truths will come out about you all"

      Happy Christmas to you too:-)

    3. And a very merry Christmas from me as well ;-)

  2. Thanks to the internet I learned that medical science is not a solid body that comes out from the doctor's mouth. It's much more complicated and usually there is more than one solution to a problem. It would be impossible to have this access to the variety of the existing solutions without the internet. I am thankful for your presence here, you enrich our knowledge and neuroscience too!

    Next stop: Biohacking!! (kidding)

  3. Having a post from Jeremy sounds excellent. I've had to assess the online info with care since being diagnosed in 2000. Yet, the internet has been of great benefit at times once I found sites like yours out there.

    1. The internet is just a publishing platform with new ways to spread information. What is needed are better filters and aggregation sites to help navigate it.

  4. Re "The Internet empowered me as a patient to become informed about my condition, to consider my options and the opinions of others, and to take charge of managing my disease in the best possible way for me."

    I could not agree more and have previously posted on the archaic attitudes of some clinicians who can't cope with informed patients who want or expect to have a two-way discourse on prognosis, treatment etc etc (maybe they feel threatened).

    If it were not for being able to find out 'stuff" on the internet (including this blog), I probably wouldn't be here to post any comment - the depression and other side effects from IFN-Beta 1A I suspect may well have driven me down the ultimate self-destruction path. Access to the internet enabled me to make an informed decision to stop taking what for me was definitely a nasty poison.

  5. Read real life experiences of HSCT. Read people's experiences, long and short it and make up your own mind.

    Internet and real world experience is the biggest nemesis of neurology and scientists.


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