Patient, Family and Consumer Priorities
The National Partnership has identified strategic priorities for using health IT to support better health and health care for patients, families and communities, including consumer access to and use of digital health information. These priorities guide our work to advance digital health policy and technology.
Drawing on our years of experience in health IT policy, the National Partnership has identified priority strategies we believe play a fundamental role in realizing the potential of modern technology to support patients, families and consumers in being active, engaged and empowered members of their health care teams. We encourage you to read more about our priorities below and explore how we integrate these concepts into our policy advocacy work here.
FACILITATING ONLINE ACCESS AND COMMUNICATION
Online access to health information is a game changer. It helps improve patients’ knowledge of their health, ability to communicate with health care providers, and desire to do something to improve their health. It empowers individuals to make better health care decisions, navigate the system and manage their care more effectively – including donating their data for research.
The resources below detail key benefits associated with online access and communication for consumers and provide guidance for connecting more patients and family caregivers to actionable electronic health information.
- Consumer Benefits of Health IT (Fact Sheet)
- What Health IT Means for Women (Fact Sheet)
- GetMyHealthData initiative
- Engaging Patients and Families: How Consumers Value and Use Health IT (2014 Survey)
- Opportunities and Challenges in Advancing Health IT (2016 Testimony, House of Representatives Committee on Oversight and Government Reform)
- Health Information Exchange: A Path Toward Improving Quality and Value for Patients (2015 Testimony, Senate Committee on Health, Education, Labor and Pensions)
SUPPORTING SHARED HEALTH AND CARE PLANNING
Care plans help health care teams coordinate care and can enhance patient-provider communication, particularly when facilitated by a dynamic electronic platform. Digital tools enable patients, family caregivers, providers and social services and supports to access and contribute information about the individual’s health and care needs, and to better plan and coordinate care across providers and settings. We believe that next generation care plans should be collaboratively developed by patients and providers, and should support all parties with actionable information to identify and achieve the individual’s health and wellness goals. Read more about the future of shared care planning in our report and explore what these next generation care plans should look like.
- Care Plans 2.0: Consumer Principles for Health and Care Planning in an Electronic Environment
- Care Plan 2.0 Use Cases: Knee Replacement Care Plan; Heart Failure Care Plan
- House of Representatives Letter on Advancing Patient- and Family-Centered Care Planning in Meaningful Use Stage 3
- Senate Letter on Progressing Advance Care Planning in Meaningful Use Stage 3
PROMOTING HEALTH EQUITY
Digital health tools can help health care providers identify and reduce health disparities, including identifying the unmet needs of underserved populations. They also offer great promise for promoting health equity by increasing individuals’ access to their health information and improving communication and information sharing between providers and patients. Read our evidence-based recommendations for leveraging federal health IT initiatives and policies in support of health equity and check out congressional support for these recommendations.
- Leveraging Meaningful Use to Reduce Health Disparities: An Action Plan
- House of Representatives Letter on Leveraging Meaningful Use to Reduce Disparities
- Senate Letter on Reducing Health Disparities
PROTECTING AND CLARIFYING PRIVACY AND SECURITY
As our health care system increasingly employs 21st century technology to support better health, it is critical that policies and procedures are in place to protect patient privacy and build trust – and that stakeholders understand the rights of individuals to their health information and the obligations to make health data available. Additionally, mobile access and digital tools are enabling new ways to access, use and share health information, and more work needs to be done to educate consumers about how these devices and apps use and protect their health information within and outside of the health care system. The resources below provide more information on privacy laws and policies that affect digital health information and access.
- HIPAA Infographic: The P is for Portability
- GetMyHealthData: Your Right to Request Your Health Data
- Recommendations on Harmonization of Privacy Laws (House Committee on Oversight and Government Reform)
- Making IT Meaningful: How Consumers Trust & Value Health IT (2012 Survey)
ADVANCING COMMUNITY AND POPULATION HEALTH
By collecting and aggregating digital health information across individuals, health IT can be used to improve population health, for example by identifying health disparities, preventing epidemics, and measuring and reporting on the quality of care across providers. Digital health tools also hold great potential for capturing and integrating social determinants of health and linking to community-based services to support patients in achieving their health goals. The National Partnership is a partner in the Community Health Peer Learning Program, which is supporting innovative community demonstrations to link critical health information from diverse sectors. Learn more about the Community Health Peer Learning Program and efforts to leverage data to address population health challenges ranging from pediatric asthma to housing insecurity.