In 2014, “patient engagement” was a topic of conferences, presentations, white papers, journal articles, and meetings too numerous to count. Another theme has been “interoperability” – among various healthcare providers and between clinicians and patients. Is there a connection between these two concepts? The latest JASON Report, “Data for Individual Health,” brings together the needs for better health information technology (HIT) and the rationale for allowing patients to access information and to communicate with clinicians. Not only is this necessary for each patient’s optimal health, but it is also necessary to gain important understandings of better and more efficient ways to deliver care.

Background. The first JASON report sharply criticized legacy electronic health records’ (EHRs’) ability to share information. In follow-up, ONC held meetings [1] before setting a new strategic direction outlined in their recently released 5 year strategic plan that reset the timeline to achieve meaningful interoperability. “Data for Individual Health” was released in November and addresses the potential uses of health information – “to expand this vision, with a focus on the health of individuals and the development of a Learning Health System.” [2]

For their second report, the task was to address specific challenges that stand in the way of better healthcare and better health. The JASON team was asked to address the role of the patient, as well as how to integrate more data from a variety of sources and a more diverse team than have been in traditional healthcare settings. They also were asked to address how EHRs and EHR data can improve care and support clinicians’ decision-making. [3]

More data needs a different approach. More healthcare than ever happens outside of medical centers [4], and a recognition that behavioral and environmental factors influence outcomes means important data comes from non-medical sources. Most EHRs don’t support bringing in data from patient devices. In addition, there are not good ways to share new data sources among all who have permission to access and can use the data to improve individual care and system quality. New types of data need to be supported, from genomics to patient-recorded outcomes.

In order to help seriously chronically ill patients, hospitals and health systems provide assistance from care coordinators, coaches, pharmacists and others who help patients stay out of the hospital. [5] These individuals or organizations may or may not have interoperable information systems but need to utilize clinical information from clinics, hospitals, pharmacies and home nursing services to make sure they have necessary information when they need it to provide timely interventions and keep other clinicians and family members informed. Data sharing is therefore important, including with patients and the family members they choose to involve.

The report calls for a “robust health data infrastructure” [6] that can integrate data from multiple sources. Such an infrastructure can facilitate a “closed loop” system, where feedback can occur among patients and family members, clinicians, medical centers, research organizations and public health agencies. [7] Only when all these data streams are aggregated and securely managed can robust analytics take place. [8]

Datuit’s SafeIX Platform is able to integrate data from multiple organizations and translate among different data standards. Patients can store their own health data, and app developers can create apps that contribute data for patients and various clinical scenarios. As the JASON Report explains, the expansion of types, sources and volume of data makes the needs for technological capabilities change. The SafeIX Platform and API are built to meet these needs and are available now, not years in the future.

Data sharing that can work. Progress has been made in the last few years, but it has not been enough to impact cost and quality of care. [9] Open APIs and more modern technology standards, such as Fast Healthcare Interoperability Resources (FHIR), will be necessary to allow patients and healthcare teams to optimally interact. [10] Not only will this enable closed loop communication, it is also needed to allow innovation for creating the various tools for patients, caregivers, clinicians, payers and public health agencies to effectively use the data to improve health outcomes and reduce costs. [11]

The FHIR standard makes EHR and PHR development more rapid than is currently possible, [12] and when combine with RESTful data transport, it can make data sharing between EHRs and PHRs happen. This allows more patient collaborative networks and support organizations to assist patients with obtaining useful information and coordinating care among various clinicians. More intuitive and engaging user interfaces can be developed that makes data useful to a wider group of data consumers, including patients. [13] It also allows access to data that has previously been difficult to integrate – from communities and non-profit organizations that generate information about chronic conditions, such as heart disease and cancer. [14]

Privacy and security needs must be met. In recent days a great deal of attention has been given to protecting personal information. Health information can be particularly sensitive, so it is especially important to patients that their information be protected. In healthcare as in other aspects of data security, safeguards must evolve and not place too much trust in current practices, even encryption. [15] The Report proposes a new concept which they call “privacy bundles” where an individual chooses a set of permissions and authorizations. This concept is especially applicable when there are more organizations involved in the flow of health information, but it also requires a sophisticated system to easily determine who has accessed the information to allow identifying all who have accessed information and if that access violated the individual’s stated privacy preferences. [16] In sum, “[a] robust data infrastructure that can enable a ‘Learning Health System,’ requires the ability to ingest all the data, keep the data safe, understand it, integrate the data, and communicate the knowledge gained. This concept requires scalability that goes well beyond the interoperability of EHR systems.” [17]

In the 20th century, patients increasingly voiced their preferences when making decisions about treatments and procedures that are to be undertaken. Now that medical records are more likely to be digital, the question is how best to allow patients to be meaningfully informed of risks and benefits of treatment options. [18] Although it is in its infancy, sharing information is becoming easier and expected, and patients and caregivers can now be in the loop. [19] At Datuit, we look forward to 2015 bringing better tools for patients and clinicians that bring this vision closer to reality

[4] ONC, Health Information Technology Infrastructure to Support Accountable Care Arrangements (October 2014), page 18. Accessed at http://healthit.gov/sites/default/files/Report-HITtoSupportAccountableCareArrangements.pdf.

[1] JASON Task Force Meetings. Gordon Raup, Datuit CTO, provided testimony at a listening session. Accessed at http://www.healthit.gov/FACAS/sites/faca/files/JTF_Testimony_GordonRaup_2014-08-05.pdf.
[2] Recommended strategies include (1) leveraging nonprofit institutions that work to improve care for specific medical conditions; and (2) use improved information exchange capabilities to utilize diverse data sources, possibly utilizing care coordinators to integrate data. JASON, The MITRE Corporation. “Data for Individual Health.” AHRQ Publication No. 15-0006-EF (November 2014). Accessed at http://healthit.ahrq.gov/sites/default/files/docs/publication/2014-jason-data-for-individual-health.pdf, pp. 1 and 5.
[3] “Data for Individual Health” pp. 14-5.
[4] “It is clear that only a small fraction of individuals with health issues visit a physician, only 1% are hospitalized, and less than 0.1% are hospitalized at an academic medical research center.” “Data for Individual Health” p. 11.
[5] Ruben DB, Tinetti ME. The Hospital-Dependent Patient. N Eng J Med 370(8):694-7 (2014). Accessed at http://www.nejm.org/doi/pdf/10.1056/NEJMp1315568.
[6] “Data for Individual Health” p. 12.
[7] “Data for Individual Health” p. 19.
[8] “Data for Individual Health” p. 45.
[9] “However, the initiatives of which JASON is aware are far from complete solutions.” “Data for Individual Health” p. 48.
[10] “Data for Individual Health” p. 49.
[11] “Data for Individual Health” p. 51.
[12] “Data for Individual Health” p. 55.
[13] “Data for Individual Health” pp. 60-1. “Doctors will want to assemble the information differently from the consumer. In addition, because of the high level of potential customization, the view of the data may differ from clinician to clinician or from hospital to hospital depending on the components of greatest importance or the relevant workflow of the clinic.” p. 65.
[14] “Data for Individual Health” pp. 71-3.
[15] “Data for Individual Health” p. 81.
[16] “Data for Individual Health” p. 82.
[17] “Data for Individual Health” p. 83.
[18] Blumenthal D, Squires M. Giving Patients Control of Their EHR Data. J Gen Intern Med 30(Suppl 1):S42-3 (2014). Accessed at http://download.springer.com/static/pdf/232/art%253A10.1007%252Fs11606-014-3071-y.pdf?auth66=1419968545_2be4081f7b8485b0f15e07dbdf4fb773&ext=.pdf.
[19] Koeck C. Imbalance of power between patients and doctors: The price of ignoring the shadow. BMJ 385:g7485 (2014). Accessed at http://www.bmj.com/content/349/bmj.g7485.