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!


  1. Ok I’m sold, going to spend all my #pddigital15 money on medx and if there’s any left come to Sweden. If the brilliant Mike Seres is there all the better!

  2. I think I do more on my own than what I am advised by our healthcare team! I track everything about him, especially when he is well, giving us new insights into what might be contributing to illnesses. We have monitoring devices – Bluetooth scales, home spirometer, culture swabs – all that allow us to measure and monitor his health between visits and then have a meaningful conversation with the doc during visits. I attend healthcare meetings related to my sons disease, I blog and share what I’m doing and learning with the hope that it could also help someone else, something that my team has not embraced and has even cautioned against. I research and survey my peers to better understand how what they’ve learned might be applicable to us. I also worry and wonder and hope in ways that only the mother of a young kid with a progressive and fatal genetic disease can. You’re rarely told to hold onto that hope, rather to follow their plan as best you can. I can’t wait for this discussion!!

  3. I realize that the effectiveness of my drugs is in direct correlation to when I eat, given that in order to get to the brain they have to be absorbed by the intestines into the blood stream and carried to the brain…As they are are noticeably more effective when taken on an empty stomach,. I am much more careful about the timing of my meds in relation to the timing of my meals than I used to be. I think this more significant than how protein affects sinemet. Interference depends on the heaviness and quantity of the protein; meat is a problem, eggs are not, for example.

  4. I am Halfway through a course called Patient and Community Engagement Research (PaCER) offered by the University of Calgary. We work in teams and learn to do research ourselves, as patients.

    Our research proposal just received approval from the Ethics Review Board. We do a form of modified qualitative research where the participants in the project are also peers. This is a good way to get deeper insights. It also brings an authentic patient presence to research planning, projects and knowledge uptake. Lately the patient voice seems to be at least ‘once removed’ from the field of active decision making

    The PACER program also works to create the partnerships & infrastructure needed to transform the role of patients and families in health & health culture experience.

  5. Hope to see you all when you visit later this month! Stellar lineup for a great panel!

    I’m still busy tracking my diet, exercise, stress, and sleep, and doing my best to optimize my routines to control symptoms, and hopefully slow (and eventually halt) progression of PD. I talked about some of my recent discoveries after doing some stool tests, finding my gut is not absorbing all those Omega 3 fatty acids that are supposed to protect our nervous system. Also, uBiome test confirmed my diversity is low and lacking probiotics. I’m having more luck with my new naturopathic doctor who is helping me look at all those other systems that connect to the nervous system… My latest Quantified Self presentation is here: http://www.slideshare.net/kevinkrejci/fighting-mr-parkinson-with-data-round-three

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