July 21, 2014 Submitted electronically to cures@mail.house.gov The Honorable Fred Upton The Honorable Diana DeGette Chairman Member Energy & Commerce Committee Energy & Commerce Committee U.S. House of Representatives U.S. House of Representatives 2125 Rayburn House Office Building 2368 Rayburn House Office Building Washington, DC 20515 Washington, DC 20515 RE: 21 ST CENTURY CURES DIGITAL HEALTH CARE Dear Chairman Upton and Congresswoman DeGette, The National Partnership for Women & Families is pleased to submit comments on the Digital Health Care white paper, and commends the committee s leadership for establishing the 21 st Century Cures initiative to accelerate the discovery, development, and delivery of medical treatments and cures. The National Partnership is a leading non-profit, non-partisan organization working to promote access to high-quality health care, fairness in the workplace, and programs and policies that help women and men meet the demands of work and family. The National Partnership leads the Consumer Partnership for ehealth (CPeH), a consumer coalition working to advance private and secure health information technology (health IT) in ways that measurably improve the lives of individuals and their families. Members of the National Partnership for Women & Families and CPeH have been integrally involved with efforts to build electronic health information exchange nationwide. 1 Like you, we seek to create a digital health care ecosystem that meets the needs of patients and families and facilitates better care, better outcomes, and lower costs. Lawmakers and their constituents on both sides of the aisle agree that despite the best efforts of deeply caring health professionals, our health care system is simply too expensive in both financial and human terms for patients and providers alike. 1 See, for example, Five Years of HITECH: Progress and Opportunities (Feb. 2014), available at http://www.nationalpartnership.org/research-library/health-care/hit/five-years-of-hitech.pdf; Care Plans 2.0: Consumer Principles for Health and Care Planning in an Electronic Environment (Nov. 2013), available at http://www.nationalpartnership.org/research-library/health-care/hit/consumer-principles-for-1.pdf; Leveraging Meaningful Use to Reduce Health Disparities: An Action Plan (Aug. 2013), available at http://www.nationalpartnership.org/research-library/health-care/hit/leveraging-meaningful-use-to.pdf. 1875 connecticut avenue, nw ~ suite 650 ~ washington, dc 20009 ~ phone: 202.986.2600 ~ fax: 202.986.2539 email: info@nationalpartnership.org ~ web: www.nationalpartnership.org
Health IT is the essential foundation for improving health outcomes for both individuals and populations, as well as lowering costs. Through the Meaningful Use Electronic Health Record (EHR) Incentive Program established by the HITECH Act of 2009, Congress provided the nation with some necessary tools to transform American health care from the current fee-for-service model to one that rewards better health outcomes and quality of care. The program provides incentive payments to eligible professionals and hospitals serving Medicare or Medicaid beneficiaries who adopt and meaningfully use certified electronic health records meeting common standards and functions to improve patient care. The Meaningful Use Program has been a driving force for innovation and a catalyst in the development of the digital health care ecosystem. As the white paper notes, advances in health IT have greatly supported and advanced patient engagement. Patients increasingly have the ability to view online, download, and transmit their own health information, which is a monumental advancement for consumers. Health information is also increasingly available at the click of a button with Blue Button. This kind of improved online access to one s own health information is a game-changer for patient engagement. Improved access also enables patients to identify errors in their health records and bring these to the attention of their providers, which can be crucial for patient safety. The Meaningful Use Program has also been instrumental in establishing the kind of personal health management features and patient safety measures that help foster patient engagement. Secure messaging with providers enables patients and caregivers to ask questions, share concerns, and provide pertinent information with their providers using the modern tools that consumers use in all other areas of their lives. Electronic reminders about preventative and follow-up care support consumers in their efforts to stay healthy. Notwithstanding such monumental advances, we agree with the committee that significant gaps remain. We cannot transform an entire health information system overnight. It takes great time and effort, and while Congress laid the necessary groundwork by passing the HITECH Act, work remains to be done. Below, please find our responses to questions posed in the white paper on what Congress can do to advance the digital health care ecosystem. How Congress Can Improve the Digital Health Care Landscape Expand the Meaningful Use Program In the HITECH Act, Congress articulated the strategic goal that, by 2014, an electronic health record is in use for every person in the United States. To achieve this goal, we must expand the list of eligible professionals and hospitals or facilities covered by the Meaningful Use Program. We need to ensure that every provider in the country has health IT that can safely and securely measure the quality of care, coordinate with other providers, and give patients and family caregivers the information they need to be active partners in their care and health. We encourage Congress to capitalize on the remarkable progress already 2
made and expand the Meaningful Use Program, both by advancing its requirements and technical standards and by extending the program to other, non-eligible providers, such as long-term care, behavioral care, and home-based care to ensure that information is exchanged and care is coordinated across settings of care. Additionally, Congress should encourage the Department of Health and Human Services (HHS) to make public the Meaningful Use registration and attestation database. This would help consumers to identify and choose providers that have the ability to electronically exchange health information and those offering patient engagement features such as the ability to view, download, and transmit one s own health information and securely message the provider, thus driving the business case for an advanced digital health care ecosystem. Leverage Health IT to Advance Health and Care Planning Lack of coordination and communication is one of the most ubiquitous consumer complaints about the U.S. health care system, and is a key driver of poor quality and unaffordable care. While individual pieces of legislation have been introduced promoting care planning in various distinct care settings such as those involving cancer treatment, the digital care ecosystem needs to evolve from silos of discrete episodes or illnesses to proactive, longitudinal wellness planning, from which all individuals can benefit. Health IT makes this possible. Technology can help make necessary information more readily available and actionable, connect all people who have a role in an individual s care plan, and provide a shared platform for the ongoing maintenance and management of an individual s care and wellbeing. Electronic platforms also make it possible to scale plans according to individual needs and various stages of life. The Meaningful Use Program offers an immediate opportunity to advance the technological foundation for care plans, and the process of care and wellness planning. Congress could direct ONC to leverage Meaningful Use standards in order to provide consumers with the next generation of electronic, dynamic health and care planning tools to support their efforts to set and achieve personal health and wellness goals, track progress, and adapt to changing circumstances. Furthermore, Congress should reform Medicare payment policies so that activities such as care planning or use of health information exchange to share care summaries are reimbursed and incentivized. How Congress Can Increase Utilization of Technology to Improve Patient Care Increase Awareness of Technology Tools As noted earlier, patients ability to view online, download, and transmit their own health information was a monumental advancement for consumers in Stage 2 of Meaningful Use. In a national survey the National Partnership for Women & Families conducted in 2011, 80 percent of patients with online access to the information in their providers EHRs used it to better understand and manage their health and care. However, while patients see the value in easy, online access to their own health information, they also need to be 3
informed of new avenues to access it. To that end, Congress should strongly encourage ONC and CMS to plan and implement the corresponding beneficiary engagement and education efforts that will be necessary to fully realize the potential of patient access and use of their electronic health information. Moreover, members of Congress themselves can play an important role in such an education campaign. Americans rely on their members of Congress to communicate, translate, and mediate between voters and their government. In their regular communications with their constituents, members could address constituents ability to access their own health information and make sure that they are aware of the tools now available to them. For example, current Medicare beneficiaries who download their claims data from CMS via Blue Button may easily be overwhelmed by the amount, complexity, and clinical nature of the information they receive. It is incumbent upon the federal government to ensure that providers make consumers aware of tools like ibluebutton and other applications that upload, organize, and display this information in ways that are understandable and useful to patients, families, and providers, and in doing so, account for the differing levels of health IT literacy and health literacy among patients. As the white paper notes, mobile applications support patient engagement and empower patients. Moreover, smartphones are helping to reduce the digital divide by providing consumers without access to broadband or computers in underserved communities a way to track their health indicators and access health information online. Therefore, it is vital that Congress direct government agencies to create standards for mobile devices so that the data captured and transmitted by mobile devices can connect with EHRs as well as Personal Health Records (PHRs) and other ehealth tools. This is particularly important for the collection of patient-generated health data (PGHD), such as patient-reported outcomes, medication side effects, pain levels, and functional status. PGHD are distinct from data generated in clinical settings and through encounters with providers in two important ways: First, patients (not providers), are primarily responsible for capturing or recording these data. Second, patients direct the sharing or distribution of these data to health care providers and other stakeholders. Use of both clinical and patient-generated data is a more effective approach for engaging patients and their families, ensuring that care results in better outcomes, and decreasing costs associated with unnecessary readmissions and difficulties with adherence. PGHD is not a new concept patient-generated data are already valued and incorporated in people s medical records today, including information like family health history and patient-reported outcomes. But with the advent of mobile technologies such as health related apps and home monitoring devices that can collect data such as blood pressure, steps walked, etc. the amount of patient data being collected and made available has the potential to increase exponentially. Patient-generated data can not only be leveraged to inform effective treatment recommendations, but are also critical for the development of new treatments and cures. Congress could encourage ONC to continue advancing the standards necessary to better collect and incorporate PGHD in clinical settings. 4
How Congress Can Ensure Continuation of Innovation While Mitigating Risks Continue Funding to Foster Innovation The Meaningful Use Program has acted as one springboard for innovation, and ONC has funded several advanced research projects that leverage the standards of EHRs to foster innovation and improve patient care. An example is the SMART platform, whereby individual patients, physicians, small software vendors and others can design innovative health IT applications at a lower cost, using an approach that is similar to developing an ipad app today. For example, Meducation, an app created by Polyglot Systems, was the winner of the SMART Apps for Health challenge in 2011. SMART Meducation translates medication and discharge instructions so that they are understandable for patients with lower health literacy, those who speak a language other than English, and those who are visuallyimpaired. ONC s technology competitions have also led to the creation of ibluebutton, which won ONC s Blue Button Mash-up Challenge in 2012. This app combines Blue Button data downloaded from a hospital, health plan, or doctor s EHR and makes the data securely available on patients mobile devices in an easy-to-read, easy-to-use format. In order to continue fostering the kind of innovation that has led to the creation of advanced technologies, it is essential that Congress continue to fund ONC at requisite levels and encourage more technology competitions and innovation endeavors. Ensure the Inclusion of Patients in Innovation Efforts As patients continue to gain electronic access to their own health information and begin using health IT to manage and share their information, their involvement will be critical. Patients have unique needs, and involving consumers in the design of patient-facing technologies would likely enhance usability and safety and could also identify design flaws that might ultimately lead to safety problems. As federal efforts to build the digital health care ecosystem continue, Congress should require that patients and caregivers be included in innovation and safety development efforts. Thank you once again for the opportunity to review and provide input on the 21 st Century Cures Digital Health Care white paper. We stand ready to be a resource to you and to work with your offices and Congress at large to ensure that the digital health care ecosystem continues to hold value for all stakeholders as we move forward. Sincerely, Mark Savage Director, Health IT Policy and Programs National Partnership for Women & Families 5