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The Game-Changing Impact of Empowering Patients with Health Data


We live in a world with copious amounts of data, in which information of all kinds is constantly gathered and accessed for research and analysis. This is especially true in health care, where information about patients is continuously recorded, accessed, and shared for their care, coverage, research, and many other reasons. However, despite the uptick of electronic health records, wearable technology, and online resources, health data remains a hazy topic and an underutilized asset by patients and other stakeholders.

Recent research shows that 41 percent of patients had never viewed their health data – but an overwhelming percentage of those who had said that their data was useful. Many patients want to use their health information but are unsure of what health data is, how to access it, or how the data could serve them.

During this free webinar discussion with thought leaders working in health data, we will confront some of the questions surfacing around this topic, including: What are the roadblocks to patient access of health data? What are the legal protections for patients and their health information? What are patients currently doing with health data, and what do they want to be doing? How can access to health data be the first step in engagement and empowerment in the biomedical R&D system?


  • Taylor Cusher, Associate Director, FasterCures, a center of the Milken Institute
  • Erin Mackay, Associate Director, Health Information Technology Programs, National Partnership for Women & Families
  • Lucia Savage, Chief Privacy & Regulatory Officer, Omada Health, Inc.
  • Tanisha Carino, Executive Director, FasterCures, a center of the Milken Institute (moderator)


The world of health data exists all around us, with apps, wearables, electronic health records, and other devices constantly gathering information about our lives. Clinical care, the focus of our health systems, only account for 11% of our overall health, meaning that there exists a goldmine of information gathered from diverse sources across an individual’s life. This information could not only benefit the biomedical R&D system but also could allow everyone to live happier, healthier lives. 

This environment is how moderator Tanisha Carino, executive director, FasterCures, a center of the Milken Institute, set the stage for the July 19 FasterCures webinar, “The Game-Changing Impact of Empowering Patients with Health Data.” In an R&D system that increasingly relies on data, patients are often unaware of where their gathered data are held and may not understand how to utilize and access their information. However, surveys have shown that when patients do access their data, they often find it useful.

Webinar panelists Lucia Savage, chief privacy and regulatory officer, Omada Health, Erin Mackay associate director, health information technology programs, National Partnership for Women & Families, and Taylor Cusher, associate director, FasterCures, discussed these challenges facing stakeholders across the health-care spectrum, in addition to highlighting the potential benefits of more fully utilizing health data as a point of connection within patient communities.

System and Patient Responsibilities Regarding Health Data

Savage began by sharing that policymakers have only recently tried to understand privacy issues that may support or impede clinical information exchange. However, patients and their caregivers today have a much higher awareness of the differences between the data collected in a clinical setting and the information collected about our health every day through the use of apps and digital tools.

As Savage noted, if we want patients to be engaged in using their data, then the information displayed from these tools must provide real time insights that are digestible, meaningful, and actionable.

During her time as chief privacy officer at the U.S. Department of Health and Human Services Office of the National Coordinator for Health IT, Savage heard research volunteers tell policymakers what they wanted regarding data. This included wanting to sign a single consent valid across institutions, have their input respected, know how their participation helped, and secure their data from the “Bad Guys” and not from each other. Research participants want institutions to collaborate and allow participants’ data to be used where needed.  

Savage argues that since researchers are asking patients to read and sign complicated documents for their participation in research, we should give them more credit as we return results back to them. As Savage posted in a tweet on this issue, “I am super sympathetic to results being misunderstood, but I would hypothesize that if the people described are competent to #consent, they are competent to get their results back.”

Consumer Pain Points and Tools to Help

Following Savage’s presentation, Mackay discussed the pain points currently facing the community of patients she serves through the National Partnership for Women & Families, as well as some tools that the organization has found useful in its efforts to engage individuals with their health data.

She highlighted that health IT and data are so important to the National Partnership for Women & Families because 82 percent of women make health-care decisions for themselves and their families, as well as providing two-thirds of family caregiving. Efficient and convenient access to online medical records and technology helps women in their role as “Care Coordinator-in-Chief” for their families.

In a 2017 survey, 53 percent of Americans who had been offered online access to their medical records were logging in and viewing their data. But for the 47 percent who were not, the top reasons cited were their desire to speak to a provider directly and their perceived lack of need for their health data. For those viewing their data, 85 percent used it to view test results, and 62 percent for “convenience” tasks — requesting prescription refills, completing paperwork, or scheduling appointments.

Mackay shared that her favorite finding from the survey was that patients encouraged by their provider to use their online record were twice as likely to do so. It is not enough to make portals available; providers need to help patients understand that their information is available to them and educate them about how it can be beneficial.  

Several other pain points emerged from Mackay’s presentation:

  • Patients are still unaware of their rights in accessing their data
  • Requesting data can be confusing
  • Inconvenient delivery methods exist
  • Data are still designed primarily for the doctor
  • There are cultural issues around providers guarding the data and not sharing it
  • There is limited usability of the data provided

Data access should not be a replacement, but a complement, to the patient-provider relationship. As digital access is evolving, education is going to be vital in helping stakeholders understand that patients have a right to their data. But it is also important that people understand their own responsibilities to protect their health data as it becomes easier to access and manage it on their phones and devices. 

Breaking Down Barriers to Patient Engagement with Data

Given all of the current challenges and benefits in the world of health data, Cusher closed out the panelist presentations by discussing the Health Data Basics project that she has been leading for FasterCures.

The issue of health literacy among users has shown to be a barrier — only 12 percent of adults in 2003 could be considered “proficient” in understanding their data. If they cannot understand their health generally, then how can they understand their health data? Cusher also agreed that many patients find their data useful, but they often cannot track down where their data is shared. Furthermore, they often do not use their data to help them make decisions around their health.

Cusher went on to note that the potential future uses of data that participants identified are enormous, but we need to work on creating more systems to leverage them. Patients want to see their data put to actual use.

Given these findings, how do we get to a place where patients are able to not only access their data, but also understand and use the data that they are accessing?

Cusher identified a number of ways to achieve this:

  • Educate patients to improve their health literacy and understand data literacy
  • Remove technological barriers to data, yet maintain privacy and security
  • Build trust, be transparent, return results, and tell patients how their data is being used
  • Keep patients and their caregivers at the center
  • Collaborate, as no one can do all of this alone

Confronting Data Challenges

To kick off the Q&A portion of the webinar, Carino asked participants how do deal with possible privacy loopholes in platforms holding personal patient data, as has been recently highlighted in the media.

Savage answered that peer support is an important part of helping patients deal with illnesses, but we need to ensure that this technology is used without abusing privileges. While we do not regulate what individuals do with their data once they have it, they are responsible for securing it.

Mackay added that people will always have different thresholds regarding their comfort with data sharing and their privacy expectations. Some are willing to share “any and all of their data” in order to find a cure, while others are more stringent. As there is no one-size-fits-all solution, we need to educate people about their data to enhance their data literacy.

Carino went on to ask participants about how major cohort studies, outside of clinical studies, are changing engagement with the research process. Cusher shared that major cohort studies provide an enormous opportunity to do the research with all of the technological innovations that we have now, and that they lay the ground work now for studies in the future. However, there are concerns around establishing trust. Savage added that underserved communities can provide a benefit to their whole community by participating, but we need to keep in mind the ethical considerations of inviting people in and the conclusions reached from their participation.

Finally, Carino asked participants if the emergence of data technology necessitates an overhaul of HIPAA. Mackay answered that we need to educate people on what data sharing HIPAA already allows. Savage responded that HIPAA was an effort to digitize health care and is actually flexible and timeless, agreeing with Mackay that people misunderstand it. Savage further added that consumers are often confused that the protections that they expect in their physician’s office may not also apply in non-health-care settings, and this should be a bigger area of focus and concern.   

Navigating the Future of Health Data

Changes within the health-care system are necessary in order to reap benefits from health data across biomedical research and development. There is a certain level of responsibility on both sides —the patient and the system itself — to break down barriers to access, education, and the utilization of health information. 

However, through evaluating current practices and addressing the influx of data that exists all around us, patients may be able to live healthier lives in which they can make informed decisions about their health, and interact with healthcare and biomedical R&D systems that are better equipped to truly meet their needs. 

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