Connecting Patients with Their Health Information

Connecting Patients with Their Health Information


For most Americans, accessing their banking information is as simple as opening a fingerprint-enabled application on their smartphones. The days of monthly paper statements and long queues in bank lobbies now seem almost unimaginable. As consumers, we have come to expect—to require—the convenience afforded to us by the digitization and simple presentation of our data, from education to travel, retail to finance. So why should our health data be any different?

That is a question to which consumer advocates, regulators, and patients and their families are now demanding an answer. The cry of patients for unhindered access to their data presents providers of care with a perfect storm of opportunities and threats. First, payors of all stripes seek partners who can deliver better outcomes at a lower cost, a feat unachievable without the active engagement of patients and their families. Second, these same payors are shifting more and more of the cost and responsibility for care navigation to the shoulders of the individual through consumer-directed, high-deductible health plans. Third, the digital health revolution has empowered the health and wellness consumer in ways no legacy care management program ever has. Finally, regulators agree that each person has a legal right to their health data and are moving to expand and clarify requirements that allow individuals to electronically view, download, and share those records through, for example, third-party applications.

In the last few years, both the Office for Civil Rights and the Office of the National Coordinator for Health IT (ONC) have enhanced electronic-data sharing requirements under HIPAA rules and incentives for meaningful use. The 2015 Medicare Access and CHIP Reauthorization ACT (MACRA) framework also clearly supports patients' timely access to their data.


Taken together, these forces are contributing to the awakening of the new healthcare consumer: highly actualized individuals who believe they and their loved ones—including the chronically ill patients they help care for—have a moral right to their health data and, moreover, increasingly demand meaningful access to it. Closed health information technology transactional systems, from electronic medical records (EMR) to patient portals, face significant disruption to old business models that fail to engage the patient. A second wave of health tech companies are organizing around consumer data exchange, investing in Fast Healthcare Interoperability Resources (FHIR)-based application programming interfaces (API), blockchain technology, and consumer-facing digital health services.

As evidence, "participation in the Blue Button Initiative, a public-private partnership to increase consumer access and use of their health data grew from 30 organizations to more than 650" from 2011 to 2014 (see Figure 1).1

FIGURE 1 | Rapid shift in consumer health data access

Sample image

At the same time, the initiative is also modernizing and adopting the latest technology standards to make patient clinical and claims data readily accessible.

A defining hallmark of the new healthcare consumer is the twin demand for transparency and convenience, expectations honed by the "appification" of otherwise complex data sets and transactions, such as banking, wellness, and social media interaction. A large number of tech entrepreneurs are working feverishly to meet this valuable consumer need and looking for ways to disrupt traditional health care players. For example, armed with access to their own clinical data from multiple provider sources, health care consumers will seek trusted digital partners with whom to share their information, partners that are likely not to be legacy actors, such as a hospital system or insurance company. Traditional provider-based static patient portals have not delivered the promised value, and their effective millennial consumers will only accelerate this trend as they begin to interact with the healthcare system. They expect to spend less time managing their healthcare, even as they are more focused on personal health and wellness. Millennials are far less loyal to brands or providers and far more interested in price and ease of use, and prefer virtual visits and drop-in care to traditional primary care physician (PCP) relationships.2 As these millennials age into the role of caregiver for their own parents, they will bring these same values and expectations to the decision-making process for their parents as well as for themselves and their own children.

Because of this changing landscape, we have an opportunity to position Fresenius Medical Care to be a leader in engaging patients and families through open and meaningful access to their data. Even as we consider ways to drive interoperability between providers and points of care by engaging in national and local interoperability initiatives, we must also consider how we will directly share data with our patient customers. This "last mile," which defines our ability to reach the patient outside of the clinic or physician's office and connect with them where they work, live, and play, is our greatest opportunity to build and strengthen a lifelong relationship with the patient. To do so necessarily means we must encourage the sharing of not only our own data with the patient and the provider, but also the synthesis of the patient's other clinical records, benefits data, user-generated wellness data, consumer data, etc. This will build a robust, more complete picture of the individual using predictive and prescriptive analytics.

In this way, we will be able to provide our patients and our providers the right information, services, and nudges at just the right time. Through this bidirectional, robust, and thoughtful exchange of data, we will truly be able to deliver the value consumers and payors desire. It will be critical to synthesize knowledge and wisdom out of the heaps of transactional data gathered, and present it to patients in a meaningful way, which allows them to make informed health choices. utilization remains minimal—in particular, the CMS Medicare and Medicaid EHR Incentive Programs have not lived up to expectations. In addition to consumers having better control over their longitudinal health records and the ability to port them as needed, areas of opportunity include digital tools that drive price and quality transparency, aggregate health and wellness data, and assist the consumer with navigation and decision making.

While this may sound aspirational, consider that it was no more than a decade ago that online banking was first introduced and promptly revolutionized a 200-year-old industry. Healthcare is overdue for such a leap. As the industry reaches 18 percent of the nation's gross domestic product and the cost of care continues to outpace both inflation and consumer wage increases, consumer-led change is not a matter of if, but when. Individuals' access to all of their health and wellness information will be expected in this revolution, which means savvy healthcare organizations will not only provide the data, but also help consumers make sense of that data and assure its usability.

To do this, we must begin with a deep and truthful understanding of the patient consumer's wants and needs. We must understand their "hassle map," which outlines the process of engaging the system, with all its attendant bumps and obstacles. We must understand what meaning "health" has in their lives, and where we can be most helpful in driving that meaning and easing those hassles. Then, and only then, will we unlock the insights necessary to help us leapfrog from passively providing access to a repository of data to becoming a partner in care.


Fresenius Medical Care is working with the ONC, the Creating Access to Real-Time Information NowThrough Consumer-Directed Exchange (CARIN) Alliance, and others across the nation to advance its capabilities to support consumer-directed health data management and exchange in the coming years. Fresenius Medical Care is collaborating with leading consumer advocates, consumer-facing digital platform and app companies, providers and payors, and others to advance our capabilities to empower consumers through digital health solutions. Our focus includes the following areas of priority action:

  1. Understanding consumer wants and needs across the continuum of care
  2. Identifying high-impact use cases on which to focus, including:
    • New patient portal capabilities
    • Consumer medication management solutions—empowering patients to access, manage, and share their "whole" medication list across the spectrum of care and, more importantly, improve adherence- and medication-related outcomes
    • Provide user-friendly ways for patients to better understand and manage their comorbidities, allergies, and care plans
  3. Adopting the National Health Information Exchange Governance Forum's Trust Framework for Health Information Exchange to support safe, secure, legally compliant data sharing between covered entities, consumers, and noncovered entities such as consumer-authorized digital health apps and services and health researchers
  4. Quantifying the Triple-Aim value of engaging consumers through digital health solutions4
  5. Engaging with policymakers in Washington to advance smart regulations that support advances in the above noted areas

We look forward to working collaboratively with many others to facilitate a rapid "paradigm shift" from a world of provider-centered, fragmented health information that often leaves the patient out, to one of empowered consumers using powerful digital health apps and services to access and share their own health information when, where, and how they want, to support better health and better care at lower costs for all.

Managing our health information should be as simple as paying a bill online or booking a trip on a travel site. Fresenius Medical Care is excited to be a part of the solution in making this vision a reality.

Meet the Author

Vice President of Clinical Health Information Technology, Fresenius Kidney Care

Dr. Ahmad Sharif oversees clinical IT systems for FMCNA's largest division, formerly serving as chief medical information officer for a Tenet Health market. He was awarded a full scholarship to attend courses at Harvard University, holds an advanced project management certification from Stanford University and completed his Master's degree in public health and management from the University of North Texas.


  1. Patel V, Barker W, Siminerio E. Trends in consumer access and use of electronic health information. ONC Data Brief No. 30, October 2015. default/files/briefs/oncdatabrief30_accesstrends_.pdf.
  2. Barnet S. Millennials and health care: 25 things to know. Becker's Hospital Review, August 4, 2015. millennials-and-healthcare-25-things-to-know.html.
  3. National Health Information Exchange Governance Forum. Trust Framework for Health Information Exchange. December 2013. trustframeworkfinal.pdf.
  4. Institute for Health Care Improvement. The IHI Triple Aim. Initiatives/TripleAim/Pages/default.aspx. Accessed March 30, 2017.

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