As 2012 starts up, I have a feeling that patient engagement’s time is here. The movement is credible and has become tangibly real. Consider these 2011 tidbits:
- In January Time had its first article about a googling patient who helped a doc nail the right diagnosis.
- In April, TEDx Maastricht was the first TED event to be heavily patient-centered, with many presentations by e-patients and empowering physicians
- July’s e-patient tour of Spain, resulting in the Spanish translation of the e-patient white paper
- In the government section, the US Department of Health & Human Services had a four-city road show about consumer engagement – “Putting the ‘I’ in Health IT”
- In August the “SCAD sisters” were featured in the Wall Street Journal and have since become internationally famous
- The twenty-patient e-Patient Bill of Rights pre-meeting at e-Patient Connections
- The first e-Patient Boot Camp, presented as a Master Class in the Netherlands at UMC St. Radboud
- In October the Mayo Clinic held its first e-patient day – with five unknown e-patients (not just the usual cast of stars)
- December’s news of mega-blogger (and new cancer patient) @Xeni’s rude awakening to the poor state of health IT, and the need to take the reins ourselves: one of her scan CDs contained images that were rather obviously “some dude’s.” (On Twitter she referred to it as “the #ghostpenis.”) Then she had a horrid first MRI experience, which led quickly to the start of a “My First MRI” patient training initiative.
- In a matter of days she became a full-fledged engaged patient, thoroughly on top of her data – within a week she was helping docs read her scans on her Mac, because they couldn’t view them on their own machines
- She ditched the rude MRI shop and got her next one in a much nicer place.
There’s more, but suffice it to say, 2010 looked nothing like that. e-Patient is finally beginning (just beginning) to show up in the mainstream. And 2012 looks to be stronger.
The Media Lab’s hackathon
So it’s sweet that in mid-January, in a between-gigs week, I’ll get to drop in on the MIT Media Lab’s Health and Wellness Innovation hackathon:
Why: Healthcare is in crisis; every year we spend more and get less. At the core of this crisis is a lack of patient engagement. Patients are motivated to be involved, but they are consistently undervalued and marginalized. Current efforts in consumer health are fragmented and fail to leverage a common infrastructure to promote each other’s success through positive feedback.
What: … a two week hackathon that brings together students, health professionals, and innovators from industry to build technology that empowers patients to take control of their health. … $10,000 in prize money awarded by Spark capital …
The first day I’ll be part of the mob, orienting the teams and spurring things in as much of a patient/consumer-driven direction as I can. (And, heh, hopefully picking up some hot and exciting ideas…)
As I say, this is sweet. Usually events like this are in DC or San Francisco – so glad to have one where I can just drop in. Can’t wait.
Here’s to 2012!
Good to remind the key events Dave! but I will add a few points you have left out! Would also urge readers from other parts of the world to let us know of any significant developments that would complete the list.
1. TEDxMaastricht unless I am very wrong was the first event in Europe to give the floor to patientss to share their healthcare experience (that’s a big change…) and talk about a different healthcare where the patient sits not at the center but together with all the other healthcare stakeholders.
2. Your pres. at TEDxMaastricht went viral, wow! now at 302.000+ views, not because you are a pop star, but because what you said touched the hearts and the minds of people across the globe, as its translations in 25 languages testify!
3. The interest raised by the Health series seminars at Salzburg Global seminar that covered very hot issues such as variations in practice, shared decision making, medicalisation, risk communication and assessment, innovating for value in healthcare, gamification as a powerful tool in healthcare improvement etc. that resulted in The Salzburg Statement of Dec. 2010 http://www.salzburgglobal.org/current/news.cfm?IDMedia=59422
4. The inclusion of patients/patient seminars in the scientific program of large medical congresses like the European Multidisciplinary Cancer Congress by ECCO-ESMO (where I was a speaker last September in Stockholm on how health professionals and patients use the internet and social media (video) – and surprise!!! you are mentioned at minute 4.10 just after Regina Holliday!!) and SABCS the global San Antonio Breast Cancer Symposium where patient advocates not only participate, but also are assigned to write a report with the patient perspective on the research presented! Said reports are then distributed to SABCS participants.
So even though in particular countries there might be not big change as patients are viewed by HCP and policy makers, there is a new fresher wind blowing that might reach them…
e-Patient Dave says
Thanks, Kathi – you are a great messenger for this cause. I hope SPM will agree to have you be an official ambassador.
btw, I love that webcast software! Gotta investigate it. I love the ability to scroll through the slides and pick a spot, with the video sync’d to the slide.