High Expectations for Personal Health Records


According to a recent survey, the vast majority of patients want better access to their health records. A full 92% of respondents indicated they believe that access to their own medical records is essential to receiving personalized healthcare. “This survey shows us that patients see strong information sharing as an essential element of high-quality care,” stated Thomas Van Gilder, MD, Chief Medical Officer of Transcend Insights, the author of the study. The survey collected information from US Adults from January 20, 2016 through January 26, 2017 who had seen a doctor within the previous year [1].

It is not surprising that people want access to their health records. In virtually every aspect of our lives, we have gained access to data that was difficult to obtain or unavailable in the pre-internet world. Banking is widely performed on a mobile device or browser. Brokerage and retirement accounts are easily accessed and managed on-line. Property ownership and sales information is available from county assessor web sites, as well as real estate web sites. We’ve become conditioned to expect access to data that is relevant to us. And what data is more relevant than our own health records?

A Vision for Healthcare Interoperability

In many ways, government is aligned with people’s desire to access their own health records. Within the Department of Health and Human Services is the Office of the National Coordinator of Health IT (ONC). Their “interoperability framework” released in 2015 casts a vision of a fully interconnected, patient-centric healthcare system [2]. In this vision, patients have full control over their health records. Emergency room doctors have immediate access to your medical history. Appointments are conveniently arranged on a mobile device. A new doctor has your records ahead of your appointment. And your visit won’t start with handwriting multiple pages of forms as you check in.

Adoption of Electronic Health Records

The ONC also helps oversee the Electronic Health Records (EHR) incentive program [3], which has triggered widespread adoption of EHR systems across hospitals and other care providers. Up to $63,000 per healthcare professional has been made available to organizations over the multi-year program [4]. Now, virtually every hospital, and a strong majority of other medical providers, use an EHR system rather than a paper-based system. The incentive program requires more than simply replacing paper records with a computerized system. Providers must demonstrate meaningful progress towards interoperability and patient access to data in order to attain full incentive payments.

Standards Enable Accurate Exchange of Information

Another key ingredient for interoperability is an agreed-upon format for the data being shared. Data formats should be mutually understood among systems exchanging data. Vocabularies with precise terms should be defined and used. Health Level-7 (HL7) is the long-evolved and agreed upon healthcare standard used across the Healthcare industry to exchange information between systems [5]. It relies on a suite of vocabulary standards to precisely define terms to assure mutual understanding between systems.

Accessing My Health Records

If health records are available from providers, it should be possible to download and compile all of my records into one place. This has become my goal, to create a consolidated view of my health. It should also be possible to mix in data from wearables like smart watches and fitness bands. While enhancing my ability to manage my own health, I can also be better informed and more capable of engaging with my doctors, making time with them more efficient and productive.

Now, the stage is set to collect and manage my own records. The vision from ONC promotes interoperability. Many medical providers are managing records electronically, aiding in sharing. Most hospitals and providers enable viewing and downloading records through a patient portal. The data typically conforms to HL7 standards. With a solid foundation in place, what remains is an application that can pull the data together and help me view and manage the data. A number of applications exist today, and many more will arrive as awareness and demand increases. But, is the data of high enough quality for a complete and accurate representation of my health?

Putting EHR Vendors to the Test

Last month, a good portion of the Healthcare technology industry congregated in Orlando at the annual conference for Healthcare Information and Management Systems Society (HIMSS). HIMSS is the largest Healthcare technology conference in North America, where healthcare professionals, technologists, and vendors meet for a week of keynotes, presentations, and exhibits of vendor products and services. With a somewhat skeptical attitude, I visited several EHR vendors at the conference’s exhibition area. My goal was to gauge support for patient access to records.

My question to each EHR vendor was simple: how easily can patients download their records? I asked each to demonstrate how a patient can download health records in the standard HL7 exchange format.

Among the half dozen booths I visited, two themes emerged. First, I was pleasantly surprised that all the vendors support a patient portal with health summary download capability. The other theme, however, is that the vendors don’t promote this feature much. Two vendors stated that they don’t see many people using the feature. When hearing this, I countered that surely, increasing numbers of people are downloading, as interest is growing and more tools are available for patients to manage their own data. I didn’t get much agreement. One vendor even told me that they “kind of hide” the download feature, since not too many people use it. I finally concluded, however, that anybody who was intent on downloading their health summary could figure out how to do it.

At the conclusion of my visits, I became comfortable that vendors are generally providing data to patients who want it. As long as this data is of high quality and conforms to standards, it appears that the foundation is in place for patients like me who want to own their own records. The remaining issue is quality of data and the degree to which vendors conform to the standard.

Grading the EHR Vendors on Standards Conformance

Recognizing the importance of standards conformance, the ONC has stepped in and provided a tool to grade the quality of an HL7 data document [6]. This tool is publicly available, so you can download a health summary from your own patient portal, and grade it yourself using the ONC tool. This might provide insight into how well a health summary from one provider could be integrated into the system of another, as in the case of a referral to a specialist or switching doctors. I have downloaded a number of health summaries from practices where I or my family members are a patient, and have also downloaded samples from two other EHR vendors. The scores I’m seeing are disappointing:  The overall average ONC score across 7 popular EHR health summaries was 61.5%, or a low “D”, leaving much room for improvement.

The Future of Personal Health Records

Many of the foundational components are in place to support patients accessing and owning their own records. Most health records are electronic, and many EHR systems are making health summaries available on patient portals, albeit with quality issues and generally low conformance scores. Applications will emerge that help present all that data in a way that is easy to understand. And, patient expectations continue to rise. Health providers addressing these desires will likely begin to win more patients. They may find that patients who want their health records are more engaged, more educated on their conditions, and easier to communicate with—and this may all lead to better health outcomes with lower cost of healthcare delivery. Patients migrating to better-connected healthcare providers will in turn help trigger other healthcare providers to increase their sharing capabilities. I believe we are approaching a tipping point where access and control of health records will become available to the average American. Researchers from Johns Hopkins and others have predicted that 75% of Americans will use personal health records by the year 2020[7]. While quality, completeness, and depth of information are ongoing issues to be resolved, I believe we are on a course to see the vision of connected healthcare come true.

1.     “Patient expectations for health data sharing exceed reality, study says”. Healthcare IT News, March 3, 2017. Link: http://www.healthcareitnews.com/news/patient-expectations-health-data-sharing-exceed-reality-study-says

2.    “A Shared Nationwide Interoperability Roadmap version 1.0”. Office of the National Coordinator of Health IT. Link: https://www.healthit.gov/policy-researchers-implementers/interoperability

3.    “Electronic Health Records (EHR) Incentive Programs”. Centers for Medicare and Medicaid Services. Link: https://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/index.html?redirect=/ehrincentiveprograms/

4.    “Medicare and Medicaid EHR Incentive Program Basics”. Centers for Medicare and Medicaid Services. Link: https://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/Basics.html

5.    “About HL7 International”. Link: http://www.hl7.org/

6.    “C-CDA Scorecard”. Web based tool to score and list conformance issues in an HL7 C-CDA document. Link: https://sitenv.org/ccda-smart-scorecard/

7.    “Personal Health Record Use in the United States: Forecasting Future Adoption Levels”. March 3, 2016. Journal of Medical Internet Research. Researchers include the John Hopkins University’s Department of Health Policy and Management, the National Cancer Institute and The Ohio State University College of Medicine, Departments of Family Medicine and Biomedical Informatics. Link: http://www.jmir.org/2016/3/e73/

Kirstan Vandersluis