GetMyHealthData: Creating Data Exemplars in New York
Empowering Health Care Consumers
November 28, 2016
Outside New York State
Too often the health care system puts patients last, when they should come first. Consumers and patients are frequently marginalized, rather than placed at the center of the health care system and treated as its most important customers.
The interests of providers, payers, and other organized stakeholders take precedence over the patient in many cases. NYSHealth seeks to amplify the voice of the health care consumer and increase the information and tools available so that patients have more influence over their health and health care. To change the current dynamic and increase health care consumers’ choice, control, and convenience, NYSHealth issued a request for proposals, Empowering Health Care Consumers in New York State. Through this initiative, NYSHealth is funding ambitious, large-scale projects and studies to increase consumers’ access to their own health information; provide new tools and resources that will inform consumer health care decision-making; and identify strategies that meaningfully engage consumers in determining the types of health care services available in their local communities. NYSHealth awarded National Partnership for Women & Families (NPWF) a grant to participate in this initiative.
Under this grant, NPWF furthered the work of the GetMyHealthData campaign, which sought to document people’s experiences requesting their medical records. NPWF used the barriers identified in that campaign to work with specific New York hospitals on changing attitudes and practices to make patient and caregiver access to health records easy, automated, and routine. In many cases, patients or their family members seeking health information or records are often denied access because of misunderstandings over HIPAA privacy regulations; charged exorbitant, illegal fees; or forced to navigate impenetrable systems. They often do not know their rights regarding their own health information. This project was able to spread best practices of those hospitals that make a commitment to information-sharing for New Yorkers to access their own health information.