Monday, September 15, 2014

#NHITWeek Patient Engagement for Outcomes Research @Pfizer is using BlueButton

Prashila Dullabh – HIT Program Director, National Opinion Research – University of Chicago

- Craig Lipset, Head of Clinical innovation – Pfizer @craiglipset
- Wendy Nilsen, Health Scientist Administrator, NIH @wnedynilsen
- Jean Slutsky, Chief Engagement and Dissemination Officer – PCORI
- Sharon Terry, CEO, Genetic Alliance @sharonfterry
- Keith Marsolo, Associate Professor, Cincinnati Children’s Hospital @improvecarenow

Q: Strategies for Patient Engagement
A: Improving Awareness and making information available
In Cancer – 85% of patients are unaware of how to participate in a clinical trial or whether there is a trial they could participate in.
Using iPads to communicate in the consent process.
80% of patients want to see the results of the trials they participate in. Pfizer now creates a lay version of their clinical trial reports..
Pfizer is working with BlueButton to download a patient’s clinical record from a trial.

Unintended Consequence: Open the door between Pharma and Life Sciences as a result of BlueButton – Kudos to @AdamDole

Developer resources at Pfizer to help devlopers tie in to Clinical trials.

Craig Lipset:

  • Interested in diverse data (EMR, Sensor Data, Genotyping data)
  • Interested in supporting the ecosystem as data holder and data generator

Excited to see patients aggregate and share their data for research

Wendy Nilsen:

  • How to turn data into knowledge
  • How do we implement user centered design
  • How to share and crowd-source data
  • interested in mobile and EHRs.

Really engaging the User Design community.
Involving the users from the beginning is critical

Data is not knowledge. We need to work on translating data in to knowledge

Jean Slutsky:

  • Patient Centered Outcomes Research Institute. Patient-Centricity is key!
  • Drive transparency

4 people perform merit reviews of research proposals. This includes 2 stakeholders.

Healthcare is not user friendly. We are on a track to change this.

Sharon Terry:

  • Genetic Alliance is a network of 10,000 advocacy organizations.

How do we develop real engagement and not just a transaction.
Consent is part of the Transaction. Healthcare is not (or should not be) transactional.

How do we keep the urgency and stay aware of the people that suffer.

Keith Marsolo:

  • Working on Quality Improvement initiatives. Developing learning networks.

It is hard to bridge cultures and deal with regulatory frameworks.

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Mark Scrimshire
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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Disclosure: I began as a Patient Engagement Advisor and am now CTO to Personiform, Inc. and their platform. 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: The Power Grid for your Health.

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