Monday, March 21, 2011

#Patients20 @health2con - Looking back and plan ahead

Realt time notes from the @Health2con spring fling

The conclusion of the San Francisco meeting was the development of seven guidelines we must follow if we wish to dramatically change the health system:

1. Engage emotionally AND analytically

2. Let patients control their own data (and add to it)

3. Include the patient’s voice in decision-making (care, development, policy)

4. Engage people and provide services wherever they are

5. Recognize all stakeholders – patients, caregivers, and providers –
as equal partners with different roles

6. Network everyone, including those who aren’t online

7. Here’s the real ROI: Recognize Our Impact.

David Rosenman asked the question about Disruptive Innovation. 

Ash Damle - Disruptive Innovation is powerful but can be disturbing to people - " Are you changing everything on me"

What are the big Ideas:

- Access to Personal Information
- What do Patients need
- Case Studies - How do we demonstrate how we do something useful with our data.
- Challenges of Data standards for patient facing data (computable bits)
- Role of Patient narrative
- How much interpretation can be built on top of the data. 
- Learn from other industries
- Accurate risk communication  and perception
- Who has used 23&Me - what can we learn
- Health stream, data as "continuous reality" not record.
- Moving from Extrinsic to Intrinsic adoption and motivation
- Who owns the data (narrative and beliefs system - a Facebook paradigm)
- Qualitative Point of View
- Sickness is Private - Wellness is Social (my actual original quote was "Health may be private, Wellness is Social")
- of Patients 2.0 movement
- Rainbow Button Initiative: Learn from the Blue Button

Here comes some of the comments from the stream of conversation that yielded the above ideas list.

@Krash63 bringing some sense to an esoteric discussion.

We need to go from 0-55mph before we can accelerate  from 55-90mph. Let's get the data out there and then work on enriching and analyzing.
Portable health data will create new market opportunities. Example is Financial Consultants in the Finance Industry.

Ash Damle: We need the data before we can interpret it.

Quoting Kevin Riley of BlueCross BlueShield of Florida (again) - "No such thing as Behavior Change - we just have to offer better choices"
Yet another reference to Micro Choices.

Let's get a group of Patients to HealthCampDC on June 8th, 2011. It will feed the community health data initiative at HHS. I am sure Kaiser Permanente, our lead sponsor will support that idea.

Branding will be important

Patient Primer - help understanding. "Patient 2.0 for dummies"

Rainbow Button Initiative: Blue, Green and White Buttons
- The Blue Button: Get my personal data. The great government initiative
- The Green Button: Share my data anonymously
- The White Button: Share my data identifiably with a member of my medical team (e.g. build on direct connect initiative)

Million Voices in Washington DC. Bring the voice of the patient to Washington.

Next step. Follow up calls and working groups.

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