by Deven McGraw
With this, my last Project HealthDesign blog post, I wanted to share, on behalf of myself and my colleagues at Manatt, some final thoughts about our experience as Project HealthDesign’s Regulatory and Assurance Counsel, providing assistance to each of the five research teams and helping bring the experience of Project HealthDesign into current and important policy conversations about how to achieve a more patient-centered, digital health care system.
We began our involvement with Project HealthDesign with a keen appreciation of the fact that the health care system today does not appropriately recognize the critical role that a patient’s personal experience and day-to-day activities play in achieving optimum health and wellness. Over the past three years, it has been an honor to help the Project HealthDesign research teams and National Program Office communicate to the broader policy community the important lessons learned from their experience. Patients are experts at their personal experience; clinicians are experts at clinical care. To achieve better health outcomes, both patients and clinicians will need information from both domains—and technology can play a key role in bridging this information gap.
Project HealthDesign took this message straight to the heart of the policy debate over how to improve our nation’s health care system, including testifying before federal policymaking bodies charged with charting the future of health IT and patient engagement. As a result of Project HealthDesign’s efforts, the Federal Health IT Policy Committee’s meaningful use workgroup included in its preliminary recommendations for Stage 3 meaningful use of electronic health record (EHR) criteria a requirement that patients be provided with the ability to report patient-generated data to providers and hospitals. Observations of daily living (ODLs) were specifically mentioned on the list of acceptable types of patient-generated data. The experience of the Project HealthDesign research teams helped bring the discussion of meaningful patient engagement using technology out of the theoretical and into the practical -- and the possible.
In addition to influencing national health care policy, Project HealthDesign also generated best practices to help health care providers in the field begin incorporating ODLs into clinical care. It is not hard to envision an environment in which health care providers routinely encourage patients to use mobile devices to collect and share clinically relevant information such as ODLs. As reimbursement models for health care providers move toward paying for outcomes and episodes of care, shared savings incentives, and capitation, there will be greater incentives for providers to more actively engage patients in daily self-management and care coordination. Project HealthDesign research teams provide roadmaps for how this can be done.
One area where Project HealthDesign generated and disseminated best practices was in health information security. Patients’ use of mobile devices to generate and communicate health information triggers unique security risks, and the tools frequently used by patients are not typically equipped with high-end security tools. When health care providers handle electronic, identifiable health information, they are subject to the HIPAA Security Rule. But HIPAA regulates providers, not patients. In an article published in the Journal of Healthcare Information Management, we sought to allay health care providers’ privacy and security concerns by developing best practice recommendations for providers to help their patients safeguard the health information they create and share through mobile devices.
Another area where we seek to provide best practice recommendations is with respect to provider concerns about potential liability for failing to pay sufficient attention to patient-generated electronic health information. In a forthcoming paper, we highlight Project HealthDesign’s experience that that setting clear expectations with patients about the sharing of patient-generated data – and honoring those expectations - helped alleviate liability concerns.
By exploring practical ways to digitally capture and integrate patient-recorded observations of daily living into clinical care and testing this with real patients and real providers, Project HealthDesign’s interdisciplinary research teams have contributed groundbreaking work that will help the policy and clinical practice communities shape important improvements to the health care system.
While our involvement with Project HealthDesign may be coming to a close, we are proud to have been associated with Project HealthDesign’s important message: that a paradigm shift to a more patient-centered health care system requires that patient generated data be captured, interpreted, and incorporated into clinical care – and that we must begin now to lay the necessary groundwork for that change.
