CONSUMER: Speeding Up the Pace of Medical Research Using Patient-Provided Data
Empowered by digital media, patients for the first time in history are connecting with each other across space and time, igniting a movement that is changing the face of research. Patients, no longer passive participants as they are studied, are suggesting areas for research and are contributing data from medical records and from their own experience to speed up the trajectory of progress and discovery. Will this in fact work faster and better — overall or in some cases, as in rare disease — or just differently?
- Casey Quinlan, Mighty Casey Media (Moderator)
- Amy P. Abernathy, Flatiron Health
- Kathy Hudson, National Institutes of Health
- Jennifer C. King, SHARE For Cures, Inc.
- Vanessa Rangel Miller, Genetic Services, PatientCrossroads.com
Patient-Generated Data: “The data that is over there…” i.e. untrusted extra noise.
We need to invert the view. The Patient story is central and medical data supports the story.
- Populations are amalgamations of patient stories.
- Work together
- Patient generated data in context
- Work together to report and understand the data
Getting Doctors to say: “I looked at your report and…”
Bray Patrick Lake – Why PGD matters.
On the Advisory Committee for Precision Medicine Initiative.
Patients need a real longitudinal record.
Jennifer King @JenniferCKing Share for Cures
Using real world data to solve problems in cancer research.
Make it easy for people to connect their records for research.
Most consumers don’t understand the market for health data and how their data is used behind the scenes.
Put the patient at the center!
Patients have the best view of their condition. They manage their condition 24×7.
Online registries for 300 diseases.
illness is not a personal problem. Disease has no boundaries.
Use what is available – including the patient’s social networks.
Promote open access. Let patients share while protecting identity with research ready information.
President Obama – My genome should be mine
Universities are data hoarders. They need a mindset change.
Lots of motivations to keep data private. But one way is to engage the patient. inSouth America the patients are rallying to deal with fragmentation.
Amy A: “Alignment of incentives”
Oncology has the Oncology Care model.
When the rules came out without PGD it saw work stop.
We need to synthesize PGD to make it useable.
Data for research needs to be reliable.
Patients Own the data
The importance of patient data will grow over time. – A Gropper
Transparency of use is different from consent. Patients must be able to make INFORMED Consent.
Savvy patients are leading discussions about companies profiting off patient data – Cut the patient in on the use of their data.
Editor Notes: Feeling a disconnect…
Research need to switch from Farmer to Forester mode. There is a vast amount of information available if researchers want it. They need to work on filtering from vast datasets. Rather than cultivating a few research subjects.
I’m not sure I am buying the “Set the A1C data point” argument. If you take Blood Pressure. We know how to measure it but the medical community doesn’t trust patient measured readings.
Incentives for care will enable more data for research because Docs will be incentivized to use Patient Generated Data for their care, rathe rthan requiring them to come to the Doc’s Office to have basic readings taken.
[category News, Health]
[tag health, cloud, ONC, opendata, hdpalooza, bluebutton]
Health & Cloud Technology Consultant
Mark is available for challenging assignments at the intersection of Health and Technology using Big Data, Mobile and Cloud Technologies. If you need help to move, or create, your health applications in the cloud let’s talk.
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I am currently HHS Entrepreneur-in-Residence and CMS BlueButton Innovator working on an assignment to update BlueButton for Medicare Beneficiaries.
The views expressed on this blog are my own.
I am also a Patient Engagement Advisor, CTO and Co-Founder to Medyear.com. Medyear is a powerful free tool that helps you collect, organize and securely share health information, however you want. Manage your own health records today.
Medyear: Less Hassle, Better Care.
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