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Digital Health Learning Collaborative for Consumers

About the Collaborative

AARP and the National Partnership for Women and Families (NPWF) created a Digital Health Learning Collaborative for interested patient/consumer organizations and advocates to exchange information, discuss ideas, and coordinate response on high-profile federal policy opportunities as they arise.

Background

Technology is transforming nearly every aspect of the consumer health care experience, and applications that generate, capture, and leverage consumer health data are proliferating. At the same time, federal policymakers are exploring how to facilitate the capture, sharing, and use of data across the health care ecosystem, including modifying and/or updating laws and regulations governing health privacy and information exchange. 

The voices, perspectives, and priorities of patients, caregivers and advocates are essential in this ever-evolving environment. Without this input, the resulting policies and practices may exacerbate harmful practices or discriminatory uses - especially for individuals with lower incomes, communities of color, immigrants, people with disabilities, and other groups with less social capital.

digital data

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Putting Consumers at the Heart of Digital Health

In 2019 the AARP hosted an Innovation Roundtable series in collaboration with the NPWF on the following topics:

  • Imagining the Future: How Technology Will Revolutionize Health

  • Navigating the Future: Promises and Pitfalls of Emerging Health Technologies

  • Shaping the Future: Putting Consumers at the Heart of Digital Health

The objectives of the series were to explore the impact of this ongoing digital health revolution on consumers, and to identify high-value opportunities for consumer advocates to shape the development of policy and practice in this issue area. Click here to learn more.

Digital Health Learning Collaborative Webinars

doctor talking to mother and her young daughter

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Up Next in Digital Health

November 18, 2020

Speaker:

  • Jodi Daniel, Partner, Crowell & Moring

Jodi provides updates on digital health regulatory efforts (e.g., the HIPAA NPRM, the information blocking rules) and offers “crystal ball” predictions about the direction digital health policy could take in a Biden Administration.

Meeting Recording

Meeting Passcode: 11-18-DHLC

View Presentation

 

scientist in lab entering data

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Laws of Gravity: Unpacking SDOH Data

December 9, 2020

Speaker: 

  • Mark Savage, Director of Health Policy, UCSF Center for Digital Health Innovation

Mark talks about the Gravity Project, a national collaborative to advance interoperable social determinants of health data.

Meeting Recording

Meeting Passcode: December9-DHLC

View Presentation

 

digital health

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Beyond HIPPA: Protecting Health Data Privacy

January 13, 2021

Speakers:

  • Alice Leite, eHealth Initiative
  • Andrew Crawford, Center for Democracy & Technology

Our speakers discuss the gaps in legal protections for health data outside HIPAA’s coverage and present their Consumer Privacy Framework for Health Data. The Framework raises the bar for consumer privacy by shoring up protections for non-HIPAA covered health data and shifting the burden of privacy risk off of consumers. 

Meeting Recording

Meeting Passcode: 1-13-DHLC

View Presentation

Senior Use laptop for remote medical treatment

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Mind the Gap: Digital Divide and Health Equity

February 10, 2021

Speaker:

  • Javier Jiménez Jirau, Health Gorilla 

Approximately half of Americans (53%) say the internet has been essential to them during the COVID-19 outbreak, and another 34% call it “very important.” Yet, as many as 162.8 million Americans do not have at-home internet access – a disproportionate number of whom belong to black, Indigenous and people of color communities. Javier shares his expertise on digital health and how to promote health equity and overcome the digital divide.

Meeting Recording

Meeting Passcode: 2-10-DHLC

View Presentation

Contact

For more information, please contact Beth Carter at ecarter@aarp.org