As you might know, I am a member of the Society for Participatory Medicine (S4PM). They publish a blog called e-patients.net where empowered patients share their stories and exchange ideas on how to take control of their own healthcare.
Last week, I came across this awesome story of how these parents had to learn about DNA, gene mutation and medicine to understand what was going in their son’s body. It is quite technical and extremely interesting. If you have not read it yet, please do read it.
I shared this link with the members only listserv of the S4PM. This listserv is available for everyone to read here. E-patient Dave saw this post and published a blogpost on e-patients.net under the section – found on the net. Today, he shared that a mother contacted him to share that they saw this post and are contacting the doctor mentioned in the post. I really hope this helps their child. This is the reason for sharing such information on blogs. Even if it helps one person, it is completely worth it! Special thank you to Dave for posting this into the e-patients.net blog.
If you are not a member of S4PM, you should become a member to participate in the awesome discussion with the members of S4PM. It takes only $30/year to become a member.
I know that my first post about QS2011 was back in November and I had promised a second one. Here is that post after mulling over it for more than three months.
At the QS2011 conference, there were so many devices to track activity – Fitbit, Basis band, pedometers etc. Many of the participants (including yours truly) had tried these tools or were planning to. I realized that I had started using Fitbit and stopped and here is why I stopped.
Fitbit is a versatile device which can work as a pedometer during the day and sleep monitor at night. You just keep wearing it and it will automatically upload the stats online so that you can compare and evaluate them on your computer.
I also tried the tool for 2-3 weeks. I stopped after I noticed that consistently I was walking 4-5 kms of distance everyday. This would never happen when I was living in the US. So this is what convinced me that tools like fitbit cannot really help in an active lifestyle.
I realized that I had bought Fitbit to make sure that I was getting the required amount of walking/running everyday. But in the USA where I used to jump into a car to go anywhere, I needed an external measure to tell me that I have not been very active that day.
Fast forward to life in France and things have changed. I hardly use the car. All the places that I go to daily (grocery stores, school etc) are all within 1-2 km distance. And more importantly, driving a car is a real nuisance due to bad traffic and hard to get parking. This means that everytime, I need to go anywhere in the vicinity of 1-2 km one way, I almost always choose to walk.
This got me thinking. The real key to getting a healthy lifestyle is NOT these gadgets but a lifestyle where you walk and are on your feet most of the time as our bodies were expected to. No point in slapping on a gadget to see how many steps we have walked after spending 3-4 hours driving in a car!
Now there is new research which suggests that if one spends a very active one hour in the gym and then sits in front of a desk all day, it is just as bad as having a sedentary lifestyle. Considering this, the only way to stay healthy is to be active all day. What better way to be active than to include physical activity to go with your daily activities like going to work, shopping etc? No gadget can do that for us! Only we can choose to.
I was at the Quantified Self Europe conference this past weekend at Amsterdam. Quantified self is a community of hackers who track and monitor their activities to improve (mostly) their health. I came to know of them when I attended the Healthcamp in Bay area in October 2009. Since then, the movement has spread to all parts of the world with the help of Alexandra Carmichael and Gary Wolf.
The conference was held in an unconference format which means that the attendees chose to present their work and the conference is organized around these presentations. There were many parallel sessions and it was very hard to choose one session over another. So depending on which sessions were chosen, the experience of the participant would vary. There were many who did not present but talked about their work when we spoke during the breaks. I have included them also in here.
Theme #1: Quantified Self is preventive health (in other forums, this would be called participatory medicine since the patient takes charge of their own health). There were many variations of this theme. John Amschler (@jxa) conducted a session on hacking the Zeo clock, fitbit device to understand your health better. He is trying to get the data off these devices, put them together and then understand what his “health baseline” is. He feels that we should be able to understand our health baseline by tracking them often. After we know our baseline, we can then measure your baseline once a year and take action if you are trending away from your baseline. I felt that this is an awesome idea. In factories, we create trend charts for quality of products produced which gives us an understanding of the health of the production process. Why not use the same theory to understand our health better?
Sara Riggare presented how she controls her Parkinson’s disease. Parkinson’s disease is a degenerative disease of the central nervous system. She has been able to manage the disease due to her keen interest in controlling it. She uses a smartphone app (tonic) to keep track of her meds and understand how they affect her. She uses a Nintendo Wii for adjusting and fine tuning her balance. She is now doing a phd starting in summer 2012 to do research on Parkinson’s! She is a true inspiration. She is moving from being a patient to someone who is actively trying to find a cure! You can read an interview with her here.
Robin Barooah presented his learning from his effort to lose weight. He had gained about 45 lbs after his move to the USA. He designed an interesting process to lose weight. He just tracked his mood 2-3 hours after lunch. He did not even go back and analyze what made him happy and what did not. Just by tracking his mood, he was able to lose about 45 lbs in 18 months. Just by looking at how he felt after lunch, his brain was able to get a feel for what is healthy and what is not. His conclusion was that our body and brain is wired to do the right thing for being healthy.
The same theme was echoed in another talk about how the presenter lost weight by following a paleo diet. He felt that the act of tracking was making the difference and that it was not the data and the fancy graphs that made the difference.
I also met Martin Suba who was able to reverse his type 2 diabetes by using a combination of exercise (tracked with fitibit), diet control and weight control (tracked with Withings). He is in the process of writing up his experience. I look forward to sharing it.
There were so many other themes and many more talks. I hope to write about them and share them here.
The PCORI (Patient Centered Outcomes Research Institute) is looking for input on their definition of Patient Centered Outcomes Research.
If you are wondering what it might be, the current working definition is this (copied from their site):
Patient-Centered Outcomes Research (Working Definition)
Patient-Centered Outcomes Research (PCOR) helps people make informed health care decisions and allows their voice to be heard in assessing the value of health care options. This research answers patient-focused questions:
“Given my personal characteristics, conditions and preferences, what should I expect will happen to me?”
“What are my options and what are the benefits and harms of those options?”
“What can I do to improve the outcomes that are most important to me?”
“How can the health care system improve my chances of achieving the outcomes I prefer?”
To answer these questions, PCOR:
Assesses the benefits and harms of preventive, diagnostic, therapeutic, or health delivery system interventions to inform decision making, highlighting comparisons and outcomes that matter to people;
Is inclusive of an individual’s preferences, autonomy and needs, focusing on outcomes that people notice and care about such as survival, function, symptoms, and health-related quality of life;
Incorporates a wide variety of settings and diversity of participants to address individual differences and barriers to implementation and dissemination; and
Investigates (or may investigate) optimizing outcomes while addressing burden to individuals, resources, and other stakeholder perspectives.
As you can see from the definition, medical research done withe emphasis on patient’s quality of life and impact on their life and family is Patient Centered Outcomes Research. If you want to weigh in on the definition, head over to the “call for inputs” page on PCORI’s website.