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Harnessing Your Health Data: A Resources Guide

by Andrian McAdams, Intern, FasterCures

We are all, at one point or another, patients who enter the health-care system. This experience may begin with a trip to the doctor’s office, picking up a prescription, or even recovering from surgery.

But what happens to your health data? Many individuals don’t realize that each interaction along the way is recorded as various data points, leaving many to wonder: How is that data being used? Who is seeing it? How can I as a patient access it, too? And, maybe most importantly: How can individuals use the data to make better health decisions?

The answers to these questions can be complicated and frustrating. With support from the Patient-Centered Outcomes Research Institute (PCORI), FasterCures is developing a tool to help people better understand their health data and how they can use it to inform decision-making.

Having remote access to health data is important for patients (and guaranteed through the Health Insurance Portability and Accountability Act [HIPAA]), as it empowers them to take action and remain engaged in the health-care decision-making process. A 2015 Deloitte report on consumer use of online resources found that over the past several years, consumers have increased their use of patient portals to access and transmit their health data.

But whether searching for immunization records, a past diagnosis, or insurance information, gathering one’s health data is no easy task. Nevertheless, a recent Surescripts survey focused on connected care and patient experience found that 58 percent of American patients have attempted to compile their medical histories. But, even when patients are successful in gathering this information, deciphering medical records and making sense of what the data tell you are hard. In fact, a 2003 report from the National Assessment of Adult Literacy found that only 12 percent of U.S. adults possessed “proficient” health literacy skills.

So, what steps can you take to better understand your health data, and what resources are available to help you?

  • Patient autonomy over and access to health data presents an opportunity to improve overall health outcomes. As an organization that promotes patients being at the center of health and R&D, FasterCures wants to facilitate approaches that put the patient in the driver’s seat and allow them to take control of their health data.
  • For patients who want a quick overview of getting, checking, and using their health data, the Office of the National Coordinator for Health Information Technology (ONC) has created an infographic to help them understand this information and their rights. The graphic walks users through a fictional scenario designed to familiarize them with the ways they can take control of their data and ultimately their health.
  • Get My Health Data is a campaign to liberate health data and help patients manage their health online. The resource provides answers to questions surrounding the requesting of your data and supports the notion that gaining access to your data will lead to better health outcomes.
  • If you have questions about with whom your health data are shared and how they are handled, Jodyn Platt of the University of Michigan has designed a concise, easy-to-understand video, What Happens to Health Information?, that provides answers. Viewers are shown the life cycle of their health information and how decisions made along the way determine its trajectory in the system.
  • Interested in how health information technology (IT) may be changing the patient financial experience of the future? The Healthcare Information and Management Systems Society envisioned an online mock journey of a patient’s interaction with the health-care system and how health IT tools could be used for managing the financial elements of care. This highly detailed journey is also available from the provider perspective, helping patients understand these interactions from the other side.
  • Looking for a site that teaches users about the benefits of health IT and how they can take advantage of it to improve their lives? The ONC housed a series of informational videos and resources for patients and families regarding access to electronic health records (EHRs) and rights under HIPAA, which can be found on HealthIT.gov.
  • If you’re curious about where your data go and how they are connected in a complicated system, check out theDataMap, a Harvard University team-designed online portal for documenting flows of health data. The effort started with health data and is expanding to other kinds of personal data, with a goal of producing a detailed description of data flows in the U.S.

The importance of a patient’s ability to access, understand, and utilize personal health data cannot be understated. While this has historically been disjointed and difficult, the emergence of online resources, like those described above, are encouraging steps to enhance coordination of care, promote patient-centricity, and give patients the tools to better their health outcomes.

Taylor Cusher
Survey & Interview Guides

Over the last few months, the FasterCures Health Data Basics team, along with our Advisory Panel and Involution Studios, developed a survey and interview guide to gather information for the educational tool we are working to develop. This foundation of information is helping us better understand individuals' experiences with health data, identify knowledge gaps, and explore educational needs.


What did we ask?

The following patient & caregiver survey received over 700 responses and its results are instrumental to our understanding of individuals thoughts, beliefs, and experiences with health data: 

Patient Survey

Caregiver Survey

We also completed 15 one-on-one interviews with key opinion leaders in the health data space. They ranged from data scientists to funders to patient advocates and many other roles. Here is the guide we used to structure the conversation: 

Interview Guide

We spoke to:

  • Rebekah Angove, Stakeholder Engagement, REACHnet
  • Jason Bobe, Associate Professor, Icahn Institute at Mount Sinai; Personal Genomes; DIYbio
  • Patricia Brennan, Director, National Library of Medicine
  • Malay Gandhi, Executive in Residence, Greylock Partners
  • Marnie Gelbart, Director of Programs, Personal Genetics Education Project
  • Christopher Khoury, Vice President, Environmental Intelligence & Strategic Analysis, American Medical Association
  • Karen Kmetik, Group Vice President, Health Outcomes, American Medical Association
  • Leslie Krumholtz, CEO, Hugo
  • Sally Okun, Vice President, Advocacy, Policy, & Patient Safety, PatientsLikeME
  • Jodyn Platt, Assistant Professor, University of Michigan Medical School
  • Jane Sarasohn Kahn, Health Economist/Advisor, THINK-Health LLC
  • Sue Sheridan, Patient and Family Engagement Officer, Centers for Medicare and Medicaid Services
  • Jane Thorpe, Professor of Health Policy & Management, The Milken Institute School of Public Health, George Washington University
  • Chris Waters, President/CEO, Rare Science
  • John Wilbanks, Chief Commons Officer, Sage Bionetworks; FasterCures Fellow

What did we learn?

The survey and interview results have revealed a wealth of perspectives and experiences all related to the concept of health data. They also identified more gaps and needs than a single educational tool will be able to address.  In sharing back the results with individuals who participated and more widely with this community, we hope that these results can be interesting and useful in many contexts. 

Click below to learn more about the "key takeaways" from the interviews and a slice of the survey response data. We will also be making the raw survey data public soon in hopes that others will examine it from fresh perspectives or link it with other data sets.

INTERVIEW KEY TAKEAWAYS

Survey Results Slides

If you have questions on the results, please comment below and we will do our best to respond in a timely fashion.

Thank you to all our survey participants & interviewees!

Taylor CusherComment