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In January 2018 I will join 24 other health information technology experts, medical professionals and other stakeholders to help inform public policy as part of the Health IT Advisory Committee (HITAC). This diversity of experience is critical to advance health IT systems that are appropriately balanced to promote the best care at the right costs with optimal experience for the patient and provider, spur innovation with appropriate safety guardrails, and advance precision and personalization while securely protecting privacy.
From my own diverse experience as a practicing physician, avid IT user, and clinical informaticist, I’m keenly aware that robust health IT systems are enablers, not the end-game, to transform healthcare. Our nation’s health IT systems need to enable the real people using them – providers and patients – to share vital insights and take meaningful action. Actions that can save lives, lower costs, and accelerate biomedical research will help achieve what we as a nation have set as goals to address the looming crisis of unsustainable health care costs, an aging population with more chronic illness, and an explosion of information and knowledge that must be unlocked to deliver appropriate decisions for patients.
Yet, it is no secret that despite well-intended efforts, including nearly $35 billion taxpayer dollars spent to digitize healthcare in a meaningful way, our nation’s health IT systems remain fragmented. They are rarely interoperable and inadequate to address the pressing challenges placed on providers and patients by a seemingly infinite expansion of data volume without simultaneously creating truly actionable information. Effective population health cannot coexist with the harmful effects of business practices that actively discourage the access and use of patient information. While many health IT solutions facilitate timely aggregation and access of electronic health data, few of them efficiently enable sharing of insights – when, where and how data is needed – to improve patient safety, population health management and the clinician experience.
Based on our experiences, I believe three guiding principles should drive the Committee’s work to end fragmentation and information blocking, and promote meaningful usability that appropriately balance the needs of our diverse, and expanding, set of users.
1. Open APIs for complete, timely health pictures
The existence of standards, subsequent adoption and access to health data free from unnecessary barriers can only increase the value that innovative companies and organizations can provide to stakeholders. APIs must provide access not only to individual patient medical records but also to minimum data sets for a cohort of patients. Such access would provide practitioners with a complete health picture of an individual, as they are being seen, in context of the overall population – critical components to identify risk and drive decisions as we continue to shift to value-based care.
Many of these APIs, like FHIR, were developed with tax payer dollars for broad use and should not be subject to unreasonable barriers. In addition, APIs that offer incremental value above and beyond just the patient data should be offered at reasonable cost to facilitate use, innovation and ultimately drive the results that all stakeholders desire in the health of our population.
I would like to see policies that call for APIs to:
- Be accessible by interested parties, based on reasonable fee-for-service models, consistent with the services being provided and how the standard was developed (e.g., taxpayer dollars).
- Allow for two-way data exchange for both an individual patient and a population of patients both retrospectively (e.g., risk stratification, care gaps) and in real-time (e.g., decision support and care management).
- Be secure, stable, reliable and backward-compatible when appropriate to minimize risks of deployment by third parties.
- Clearly differentiate what is vendor proprietary data from patient data that should otherwise be accessible through public APIs.
2. Expanded ecosystem for precision population health management and patient-generated data
We should broaden the health IT data ecosystem to embrace the transformation that is occurring in health by incorporating the data generated by the consumerism of health, advances in digital health, and growth of personalized medicine. Our clients (and their patients) are asking us to aggregate and analyze their data from a variety of sources to derive further insights that will improve the overall health status of a patient population. In the age of precision health and personalized medicine, we must extend this dialogue to those vendors who may not be represented in our current understanding of certified health information technology. Otherwise we cannot adequately address how care decisions will be made in the future or how to bring those insights back into workflow of clinicians.
I’d like to see policies that recognize:
- Value access to data for innovation and to advance digital engagement and personalized medicine;
- Limit a third party’s ability to embed its intellectual property into the data of others (patients and physicians) in ways that restrict others from enabling further insights from their data to drive better health decisions;
- Promote safe, efficient and timely use of new data being generated in a digitally engaged population.
3. Trust and data stewardship for privacy and security
Data responsibility is fundamental at IBM. Establishing trust helps enable data access and exchange across care settings. Further developments in privacy and security-advancing technologies, as well as new technologies like blockchain, can accelerate this trust development and foster data stewardship best practices in health IT systems.
To promote trust and advance cybersecurity and improved privacy protections, IBM supports government and industry collaboration on healthcare data safeguards, which should be driven by voluntary, industry-led models that assess risk based measures around security. We would also like to see a modernized patient consent process. Unfortunately, in many cases, current consent laws fail to fully support an individual’s ability to decide when and how their data should be used due to substantial risks of inappropriate sharing across healthcare settings.
I’d like to see policies that call for:
- Studying and piloting technologies like blockchain to better protect data in transit and at rest, rethinking the ways records are kept and therefore the ways doctors, hospitals, post-acute care givers, and patients securely access and exchange data;
- A modernized consent process that allows more patient-directed data sharing for health and research purposes as well as potential business models that empower patients to leverage their data;
- Voluntary, flexible risk-based approaches for health data security.
As the Committee embarks on its three-year journey, I will share additional thoughts on our efforts that will move the nation closer to achieving actionable interoperability. Again, I’m thankful to be part of this important effort and look forward to beginning our work.
-Anil Jain, MD, FACP
Vice President & Chief Health Informatics Officer, Value-Based Care
IBM Watson Health