Going from researching patients to patients researchers

MedX15In 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!

Lena increased her daily “feel-well-time” from three to ten hours

For the last year or so I’ve been working in a project funded by the Swedish government’s national strategy to treat and prevent chronic diseases. We call the project “Dagens patient” (“Patient daily” in English) and you can read about it here. “Dagens patient” is based on my work around self-monitoring my Parkinson’s and we currently work with people with Parkinson’s and MS, exploring different aspects of self-monitoring together. One member of our Parkinson’s group has done some really interesting things and she talks about it in the video below. It is in Swedish but has English subtitles. Let me know what you think about it!

Tomorrow, 2nd June 2015, is my #Parkinsons1day!

#Parkinsons1dayTomorrow on 2nd of June, I will be sharing my experiences with Parkinson’s with Gilles Frydman of Smart Patients and on Twitter so you can follow me if you like. I described this project in a post yesterday and I will start at 6 am my time, which is Central European Time, when I take my first dose of medications for the day. Throughout the day, I will share my experiences, feelings, thoughts etc relating to Parkinson’s as much as I have time for or my fingers allow. I have no idea where this will take me, but I am sure I will learn a lot!

If you want to know how it goes, follow #Parkinsons1day on Twitter tomorrow on 2nd June 2015!

Not patient but im-patient