Health Data Palooza 2015 – Transparency Panel
Niall Brennan, Chief Data Officer, Centers for Medicare and Medicaid Services;
Bernard Lo, MD, President, Greenwall Foundation;
Nick Sinai, Venture Partner, Insight Venture Partners
Data is getting out there. People are using it.
Nick Sinai: The patient experience is still paper-based. People don’t know the financial cost of a transaction until it has been completed.
People have a thirst for their own information – If it is usable and actionable.
30M people have down this with their tax information.
150M americans have #BlueButton access today.
HHS is doing fantastic work.But we should prompt them to go faster.
FDA is a great model of how to develop a community.
Incentives matter. Consumers now have more financial exposure. Transparency is powerful.
Healthcare is not a simple uniform good but Transparency can really work.
Niall Brennan: Fresh from the Pixies concert and hence a little hoarse (His and Bryan Sivak’s favorite band).
Thanks to Niall for the main stage shout out about #BlueButton on FHIR!
HIPAA is outmoded
The fundamental assumptions of HIPPA are no longer tenable. There’s no such thing as a de-identified data set.
Let’s collect data on how we are doing with Transparency. Let’s share the knowledge that we gain.
Niall Brennan: Driving a culture change. Incremental release to calm people about the end of the world not occurring as a result.
Nick Sinai: HHS appointing Data Officers is all about bending the cost curve.
We have to fight the urge to make it perfect.
Bernard Lo: We have to look at the good and the bad. We don’t want doctors and hospitals to avoid the sickest patients.
Data is the foundation of many businesses. The more data you share earlier in the process the more you help competitors. So how do we incentivize people to share.
Niall Brennan: When information doesn’t flow freely markets are inefficient. We need the flow for people to innovate.
As CMS and others move to Value-based payments then Providers become incentivized.
Is it a mistake that the USA doesn’t have a National Health Network.
Nick Sinai: We are turning the corner on interoperability. Vertically integrated players are encouraged to drive interoperability because they have ended up with multiple EHRS.
The Healthcare system is not a learning system. We need to change that.
Bernard Lo: 30% of clinical trials don’t get published within 4 years. We need to change the way we do clinical trials.
We need to make sure that de-identified data is shared if a trial is abandoned.
Niall Brennan: Hope in 5 years that transparency is baked in to help people make decisions.
Bernard Lo: Patient Entered data will feel comfortable to share wearables etc. We need to push granular privacy and consent.
Realtime notes from HealthData Palooza 2015 (#HDPalooza) in Washington DC.
[category News, Health]
[tag health cloud, blue button, hdpalooza]
I am available for challenging assignments at the intersection of Health and Technology using Big Data, Mobile and Cloud Technologies. I am currently on secondment to the US Department of Health and Human Services where I am the Entrepreneur-in-Residence at the Center for Medicare and Medicaid Services. I am leading the project to deliver BlueButton Plus as a Data Service for Medicare and Medicaid beneficiaries.
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