Goal IV: Empower Individuals with Health IT to Improve their Health and the Health Care System
This is the current version of Goal IV in the 2011-2015 Federal Health IT Strategic Plan. You can read the entire Federal Health IT Strategic Plan [PDF].
Table of Contents
Individual participation is a critical, yet currently underutilized, component in improving health and the overall health care system. Health care, which often means initiating medical solutions after something has gone wrong, can only go so far in improving health. Individuals’ behaviors, and the ways in which communities foster healthy behaviors, are much more powerful forces for improving population health. But medical solutions, too, can become more centered on the individual: by arming people with knowledge and by giving them and their loved ones greater control over their own care. xiii
Health IT, which encompasses a broad category of tools and services, is critical in both empowering individuals to manage their health and shifting care to be more patient-centered so patients can be more active in health decisions and treatments. Existing and emerging technologies allow data to flow directly to and from the individual, wherever the individual may be. As a result, patient interactions with the health care system are no longer confined by the walls of the clinical setting and may occur frequently in between visits. PHRs allow patients to capture their own health observations and in some instances, to access their health information from providers. Mobile phones with glucometers allow individuals to track their blood sugar levels through their mobile devices. Mobile phones and related applications are also being used to send reminders to take medications or to send free health tips to help during a pregnancy. In mental health, mobile apps are being utilized to track moods and provide therapeutic interventions with personalized messages, exercises, and coaching. Using these tools and others, individuals can become more attuned to healthy behaviors, monitor their health, make informed personal health decisions, and receive preventative care. Patients managing illnesses or other ailments can use health IT to connect with other patients that share a similar condition, keep better track of their health care, receive health care solutions remotely, and participate in their care coordination.
However, only 7 percent of Americans have used a web site to access their health information online. xiv Even fewer have used mobile health (mHealth) applications and remote monitoring technologies. These low rates are the result of multiple dynamics: most consumers are not aware of nor able to afford the technologies, do not have access to their health information, or do not expect to take as active a role in their health and health care as they might in other aspects of their lives. As a result, they have not created a robust marketplace for technology innovation. To truly empower consumers and move the health care system to become more patient-centered, the government will need to help change these dynamics.
For individuals to become empowered they need to be included in the policymaking process. This means both understanding the government’s approach to health IT and being able to shape the direction of policies and programs. An HHS-led health IT education and outreach strategy will seek to engage the public in dialogue about health IT and provide an opportunity to shape its future and the public’s own expectations.
The single biggest lever to individual empowerment is access to data. Individual access to data can augment and improve patient-provider communications. It is not meant to replace this relationship, but rather to enhance it. Such data liquidity will make health IT meaningful for individuals, promote technological innovation, move care to center more on the individual, and ultimately have a direct effect on population health. Right now, there are too many barriers to individual and caregiver access to personal health care information. Engaging individuals with health data is a top priority of the Medicare and Medicaid EHR Incentive Programs. Other policies and regulations, such as the HIPAA Privacy Rule, will work in concert with meaningful use efforts to facilitate improved individual access to data. And the government intends to continue to develop tools and serve as a model for exchanging data with individuals, as reflected in the Blue Button initiative at VA, DoD and CMS (see strategy IV.B.2 below for more information).
Consumer health IT is an emerging industry – it is new, fast-growing, and on the cutting edge of technology innovation. While the government will not lead the innovation that is likely to take place over the next five years – that is the role of the private sector – it will remain an active partner to address a number of key steps to collaborate with the industry and foster health IT research and innovation. If the government makes more of the data it collects available—as well as encouraging others to do the same–technology companies can develop applications and business models that make the information relevant and marketable to individuals. NIH and other government institutions directly fund research and development. HHS launches contests and challenge grants to focus innovation on specific areas that will benefit health care and the public good. These strategies to promote health IT innovation are discussed in more detail in Goal V Objective B, “Broaden the capacity of health IT through innovation and research.”
As consumer technologies evolve and become more prevalent, and as individuals grow more accustomed to interacting with their health information using health IT, there will be a need to better integrate clinical practices with individual use of health IT outside of the care environment. Through ONC’s EHR certification program, the government will facilitate the creation of clinical EHR systems that can accept information from consumer applications. The government will also help clinicians empower individuals with technology, and will encourage clinical practices to take advantage of consumer-generated health information, both of which are steps in achieving the ultimate aim of moving to more patient-centric care.
The government’s objectives to “Empower Individuals with Health IT to Improve their Health and the Health Care System” are:
A. Engage individuals with health IT
B. Accelerate individual and caregiver access to their electronic health information in a format they can use and reuse
C. Integrate patient-generated health information and consumer health IT with clinical applications to support patient-centered care
The benefits of health IT can only be realized if individuals are fully involved in the development of health IT policy and confident that electronic health information is kept private and secure. When including individuals in the health IT policymaking process, the government cannot expect them to come to Washington, D.C. or to seek out rulemaking processes. To truly be representative, ONC will seek to participate in on-going public conversations about health IT. These conversations are already taking place, whether it is in online forums serving specific demographics, community-based faith groups, or chronic disease advocacy groups. ONC will participate in these public dialogues with the aim of learning how health IT policy and programs can support individual empowerment.
These efforts will be complemented by the primary formal mechanism established by the HITECH Act for public input into health IT policy: the federal advisory committees. As mentioned previously, there are two committees – the HIT Policy Committee (HITPC) and the HIT Standards Committee (HITSC) – and several “sub-committees,” or workgroups. The HITPC and HITSC make recommendations to the National Coordinator on crucial policy and program decisions on an ongoing basis. While individuals and consumer advocates have been represented on some of the Committees already, the federal government will strengthen that representation going forward.
ONC will also reach out to consumer organizations directly, both to engage them in its own work and to encourage them to reach out to their constituents in the context of their own efforts as well.
The HHS-led education and outreach strategy discussed in strategies I.A.6 and III.B.1 will engage consumers as an important audience. Education and outreach efforts will be aimed at helping people understand the transition to EHRs, the value of health IT more broadly and how health IT can be leveraged to make informed choices and support behavioral change related to their physical and behavioral health and care. In order to effectively reach millions of Americans, HHS intends to collaborate whenever possible with communication networks that already exist (such as health care advocacy groups, faith-based groups, groups aimed at supporting specific demographics, etc.) and to take advantage of social media (such as blogs and online social forums).
ONC has already reached out to numerous consumer organizations, including those representing individuals with disabilities, non-English speaking populations, and people with lower literacy levels, to involve them in discussions to shape ONC’s programs and activities.
A primary barrier to individual access to information is the lack of a business case for providers to share that information. Providers record and store patient health data in a health record; for them to also share that information with patients has historically caused additional administrative burden and cost. While individuals have a right to access their health information under the HIPAA Privacy Rule, there has been little financial incentive for providers to proactively share a copy of the medical record with the patient or to minimize the burden for the patient to obtain a copy of the medical record. EHRs, however, reduce this additional burden and meaningful use incentive payments help make a business case for doing so. The first stage of meaningful use requires providers to send patients a clinical summary of each office visit and an electronic copy of their health information within three days of their request, and includes a menu set item to identify and provide patient-specific education resources to patients. We expect that future stages of meaningful use will build on these requirements.
ONC is exploring ways to encourage EHR vendors to add features that would allow patients to access and download their health information through consumer e-health tools, such as PHRs and secure mHealth application on smart phones and other mobile devices. It is important that personal health data be not only downloadable, but also available in a format that can be re-used by other applications and support interactions between EHRs and external sources of patient-specific education resources, such as those available through NIH/NLM’s MedlinePlus Connect interface.
Beyond simple access, better tools and processes are necessary to make information more useful to individuals and their caregivers. The government will be a leader in providing information to individuals. For example, the Blue Button is a web-based feature through which patients may easily download a copy of their health information and share it with health care providers, caregivers, and others they trust. This feature is available on the DoD, VA, and CMS websites for their respective beneficiaries to use. This model is a key step forward in privately and securely sharing information with individuals, which will be enhanced over time. Using the Blue Button in combination with PHRs and other consumer health IT, individuals will be able to collect, aggregate, and analyze their health care information. Over the next five years, the government will consider more advanced features of health information sharing with individuals, including data subscriptions, standardized code sets, standards for consumer health IT applications, and applications that enable information to be exchanged through mobile devices.
The Nationwide Health Information Network has already demonstrated sharing of patient-health information between the VA, DoD, SSA, and many private sector partners. Extending the Nationwide Health Information Network specifications with additional building blocks such as the Direct specifications will include protocols for provider-patient secure messaging, which is a major step towards patient-centered care.
The Federal Health IT Taskforce has recognized individual access to data as a primary objective. As done with the Blue Button initiative, it will continue to seek ways to align government investments with methods for giving individuals useful and reusable copies of their own data.
While the Medicare and Medicaid EHR Incentive Programs provide incentives for individual and caregiver access to health information, there remain policy opportunities and barriers that the government will address outside of this program. For instance, CMS and OCR are looking at ways to enable individuals to request access to their test results directly from laboratories. CMS has also issued guidance to laboratories to clarify this issue. OCR has proposed to revise the HIPAA regulations such that a covered entity health plan would be required to provide an enrollee access to the enrollee’s electronic claims data in the electronic form and format requested by the enrollee, if it is readily producible in such form and format. These policy issues may evolve over the next five years, but HHS will support approaches that:
- Feature a transparent, understandable, and easy to use online process that enables consumers to download and reuse their data
- Accommodate the range of user capabilities, languages and access considerations, including effective strategies for ensuring accessibility and usability of electronic health information for people with disabilities and meaningful access to such information for individuals with limited English proficiency
- Provide strong privacy and security protections
Some of HHS’ priority policy work related to individual access to information has been discussed in Goal III, including: modifications to HIPAA as stipulated in the HITECH Act, individual consent to participate in health information exchange, and authorization and authentication.
Strategy IV.C.1: Support the development of standards and tools that make EHR technology capable of interacting with consumer health IT and build these requirements for the use of standards and tools into EHR certification.
There are a number of compelling examples of technologies that enable individuals to manage their own health and care, and capture more complete information about themselves. EHRs should be able to interact with these devices, so that a provider can access information that a patient using health IT chooses to share with him or her. ONC, in partnership with FDA and other federal agencies, will promote standards to enable integration, including standards for devices and EHR interoperability, standards for data integration, such as glucometer measurements and unique device identifiers (UDI), for identifying the source of the device generated data. Through the adoption of certification criteria, ONC could encourage the use of these standards and tools that may enable EHRs to receive information from any consumer health IT device that also uses similar standards and tools.
There are two main types of patient-generated health information – both of which could help achieve the goal of improved care, improved population health, and reduced per capita costs of health care:
- “Patient-generated insights” are individual’s observations and perceptions about their own health or care. These observations of daily living could come in the form of surveys, health journal entries, online blog entries, or any number of other media
- “Device-generated data” is data captured by medical devices or other consumer health IT.
While we acknowledge there are policy questions that need to be examined related to the integration of patient-generated health information into EHRs, this information can be valuable to providers in adjusting treatment regimens, valuable to individuals in understanding and improving their health choices, and valuable to the health system in measuring and rewarding for health care quality. As part of its health care quality activities, HHS is studying opportunities to encourage providers to solicit and report patient-generated information on physical and behavioral health. This includes ensuring that this information could be captured and integrated into EHRs as part of meaningful use, and exploring standards and specifications that will enable that integration.
Today, eighty percent of people on the Internet use it to search for health information. xv Online resources, including advice from peers, are a significant source of health information. Many people use the Internet to seek advice and to share their experience, but far fewer have gone online to review test results, used a PHR, or emailed their doctor. xvi Consumers have expressed interest in the use of health IT tools to make sure their health record is correct, review test results, email providers, schedule appointments online, and refill prescriptions online, all of which lend themselves to more patient-centered care. xvii
To further the use of consumer health IT, ONC and CDC are working with two Beacon communities to design tools that aim to help patients better manage their diabetes. This program is modeled after Text4Baby, a free text messaging service for pregnant women and new moms that delivers timely and practical tips customized for each stage of a woman’s pregnancy or her baby’s age. Text4Baby is the result of a public-private partnership with HHS, the White House Office of Science and Technology Policy and many private sector partners.
There are four domains of quality improvement that can help lead to patient-centered care:
- Self-management/activation refers to measures of quality improvement that assess the degree to which patients understand the role they are meant to play in their care process, and the degree to which patients have the knowledge, skills, confidence, and self management resources/support to move forward in this role.
- Honoring patient preferences and shared decision making refers to measures of quality improvement that assess the degree to which patients have the knowledge to make informed decisions about their care. It also encompasses measures that assess the quality of decision making, patient connectedness to resources, patient preferences, and care provider adherence to patient preferences.
- Patient health outcomes refers to measures of quality improvement that assess the degree to which the care provided affects disease/disability, health risk, and functional health status at the individual patient and population level.
- Community resources coordination / connection refers to measures of quality improvement that assess if, and to what extent, patients are connected to community resources.
Certain consumer health IT applications, when used by consumers and providers in concert, enable improvement in these domains. Future quality measures and meaningful use requirements will help to realize these benefits.
xiii Accelerating Health Care Innovation to Achieve System-Wide Impact; Donald Berwick at the Brookings Institutions, October 18, 2010. http://www.brookings.edu/~/media/Files/events/2010/1018_health_innovation/20101018_health_innovation_keynote.pdf.
xiv Consumers and Health Information Technology: A National Survey; April 2010, California HealthCare Foundation. http://www.chcf.org/publications/2010/04/consumers-and-health-information-technology-a-national-survey.
xv The Social Life of Health Information, 2011. Susannah Fox. Pew Research Center, May 2011, http://www.pewinternet.org/Reports/2011/Social-Life-of-Health-Info.aspx.
xvi Consumers and Health Information Technology: A National Survey; April 2010, California HealthCare Foundation. http://www.chcf.org/publications/2010/04/consumers-and-health-information-technology-a-national-survey.
xvii Consumers and Health Information Technology: A National Survey, California Healthcare Foundation, April 2010. http://www.chcf.org/publications/2010/04/consumers-and-health-information-technology-a-national-survey.