Sally Okun discusses how Patientslikeme partners with patients to increase engagement and improve health outcomes. The platform allows patients to share their health profiles, find support from others, learn from aggregated reports on treatments and symptoms, and take their health data to doctor appointments. Patient stories and experiences are transformed into aggregated data that provides insights when matched with external sources. Over 7,500 symptoms, 13,500 treatments, and 86,500 treatment evaluations have been contributed by patients on the platform. Patientslikeme is also pioneering new ways of conducting research by aggregating real-world experiences reported by patients online.
4. Patients Share, Find, Learn, Take Control
Step 1:
Create/update and
share your health
profile
Step 5:
Play an integral
part in your own
health care
Step 2:
Find support from
others like you and
compare experiences
Step 3:
Learn from aggregated
community Treatment
and Symptom Reports
Step 4:
Take profile to your doctor to have an
improved treatment conversation
5. Persona-based design…one size does not fit all
• Chroniccondition
• Lifechanging/ Life threatening condition
• Conditionnotwellunderstood by the science of medicine
• Not completely happywith the care they receive today
• Engaged in their own care
• Need or desire to track their condition over time
• Comfortablesharingpersonal health information
• Wantto tell their story
6. Understanding the journey…
Experiencing a change
Having
symptoms
Seeking
diagnosis
Getting
diagnosis
(that you believe)
Making
sense of it
Finding a
plan
Optimizing
& adjusting
Living
with it
• Any stage might be minutes…or years
• People can be in different stages with different diagnoses
• First two stages don’t always happen
• Planning / sense-making may overlap or be reversed
11. Patient Voice: Capturing Real World Experiences
7,500
13,500
86,500
Patients have told us about more
than seven thousand symptoms
Patients have added more than
thirteen thousand treatments
Patients have done over eighty-six
thousand treatment evaluations
15. Patient-reported online data collection is an alternative method for
studies of efficacy for off-label drugs which are unlikely to be funded
commercially
ALS patients are using amitriptyline to dry excess saliva; using a side
effect as a primary purpose
Rated more effective for its side effects than its indication!
Winner of the inaugural “Medicine 2.0” prize
Out team undertakes a very intentional approach to condition development that includes ethnographic interviewing with members and non-members; connect with caregivers, clinicians and researchers
This slide shows the range of tools available to monitor and keep track important information including labs, the Multiple Sclerosis Rating Scale, history about treatments and symptoms. Laura’s comments:“Every patient should keep good records, and hard copies of everything…MRIs, blood tests, doctors’ notes. Most don’t believe they have the right to see them, much less ask for a copy. But its important so you can watch for trends and ask your doctor about them.Looking at my labs I can watch to see what’s changing, is that change good or should I discuss it with my doctor on my next visit. Or if I’m really concerned about it I can send an email and see what he says.”
Published in “Epilepsy & Behavior”
In 2008 a small study in 16 experimentally treated patients and 28 controls was published that suggested that the drug lithium carbonate, normally used as a mood stabilizer, could slow the progress of ALS, a terminal illness with an average survival time of 2-5 years. The blue line shows the treated patients stabilizing over 15 months and none of them died during this time. The red line shows the placebo group, and a third of them died during the same period.
What you can see here is the blue error bars show the progression of patients taking lithium off-label, the red error bars show the progression of patients who very similar but were not taking lithium - there's no significant difference. What the original study showed, probably because it was too small and underpowered, were these blue boxes here for the lithium and the purple boxes for controls. The sad thing is that even though we announced our findings very quickly. the scientific establishment went ahead with five randomized double blind placebo controlled trials; two in the US and two in Europe, and all of them were halted for futility. It took them about 3 years and some $30m to confirm what our patients had told us in such a short space of time. We published the study in Nature Biotechnology, uploaded our entire dataset, and described our matching technique in detail in case anybody wanted to check our figures.