§1. What health info matters to consumers and providers?

As health IT makes health information more accessible, an emerging issue is how to identify what kinds of information would be:

  1. most useful for patients to get, understand and track; and/or
  2. most relevant to providers in shared clinical decisionmaking and making care plans.

Working together, providers and consumers can determine what types of information (such as blood pressure readings) are critical to track at home as well as in office visits. They can also decide how frequently data collected outside the office shoulds be sent to the provider. And they can work together to help patients (i) better understand clinical information and consumer eHealth tools and (ii) develop confidence in using these resources to make decisions about their health and health care.

Specifically, consumers could:

  1. Use eHealth tools (e.g., fitness trackers, mobile applications, text messaging reminders) and information gathered from these tools to stay well and manage their personal health and wellness;
  2. Work with their providers to identify which information collected from these tools should be shared with their providers; and/or
  3. Use websites and social media to discuss health issues, find resources to build decision-making skills, and compare how treatment options have worked with other individuals like them, while maintaining patient privacy. Then, consumers can share their findings, concerns, and preferences with their care team to choose the most appropriate treatment or option that meets their health goals.
  • What types of clinical data might be most useful for consumers to have in personal health decisionmaking?
  • How can eHealth tools help consumers better access their health information and manage health decisions, both for themselves and in partnership with their care team?
  • How can ONC help encourage individuals to create and share health information captured by eHealth tools with their care team?
  • How can health IT and eHealth tools help record patients’ choice, personal preferences, and values, about their health information and health care in ways that make this information available to their care team?

For discussion about integrating personal preferences into care decisions, see Supporting “personalized health care”.

For discussion about identifying relevant and useful consumer-generated data, see Patient generated health data.

For discussion about how technology can help improve health disparities by encouraging consumers to use readily available tools, see Decreasing health disparities through health IT.

§2. What government can do

To help consumers and providers take steps that support consumer action, the federal government could:

  1. Develop policies and technology standards that enable (i) consumers to more readily capture and transmit information securely to their providers, and (ii) providers to review and accept that information efficiently into an EHR to make their patients’ health history more complete and accurate, to track health status, and to assess patient satisfaction with their care in their electronic health record;
  2. Develop flexible regulations and policies that provide clarity for providers on how to incorporate information gathered by patients into their EHR, and enable device and software developers to create new and improved eHealth tools and health IT products that use a consumer’s health data in ways that help them to achieve their health goals; and/or
  3. Develop policies and programs to encourage and support patients’ making decisions about their health and care, on their own, with their caregivers, and in partnership with providers.
  • How can ONC encourage and promote health IT’s role in providing patients and caregivers clear and usable information about a patient’s health diagnosis and recording patient preferences about treatment options into an EHR?
  • How can the government foster health IT tools, standards, and processes that combine data from multiple sources to provide a complete EHR?
  • How can the government encourage the development and use of eHealth tools that will allow discovery of what actions or practices lead to better health outcomes?
  • How can government policies and programs build individuals’ skills and confidence in making decisions about their health and care, and/or provide resources to assist those less able or inclined to partner actively in their health and care?

For other discussions about the role federal regulation should play, see

Current Efforts: Enabling information access

Current Efforts: Shifting attitudes

Supporting “shared decisionmaking” through health IT

Patient-generated health data

§3. Privacy & security

ONC recognizes that privacy and security concerns may impact the willingness of consumers and providers to use health IT to increase access to health information. Privacy and security are the topic of a separate section of the Strategic Plan (Goal 3), since these concerns cut across all areas of health IT. Although this public comment period is not targeted at updating Goal 3, ONC will be revising that section of the Plan and your discussion of these concerns, and ideas about addressing them, will help the federal government decide on appropriate future steps.

(You can read the current version of Goal 3 by clicking the Background Documents tab at the top of this page, and selecting 2011-2015 Federal Health IT Strategic Plan).

People's Comments

(20)
Comments RSS Feed
This discussion is now closed.
show all (20)
There are no comments. Click the text to your left to make a new comment.
March 28, 2013 8:07 pm

We need to have a wider sense of what data is “health information”. For example, current plans seem to exclude dental health, chiropractic, non-medical psychological services, health care modalities for people from non-Western cultures, and personal practices such as exercise, diet, work habits, sleep, or family life. Restricting data to a limited or profession-parochial view limits its utility for patients and may prevent care providers from knowing key facts.

Use these buttons to endorse, share, or reply to the preceding comment by glenfmarshall.
    March 28, 2013 9:26 pm

    Thank you for your comment, glenfmarshall. How can the government help define a wider sense of what data is “health information”?

    Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
      March 28, 2013 10:34 pm

      I strongly recommend that ONC engage with HL7 to expand the definition of “health information”. They have already considered much of the data identified in my original comment and have key experts in knowledge vocabulary and data structures who can further the work. Assembling the necessary expertise absent HL7′s help will be difficult, and you’d likely engage the same experts that HL7 has in any case.

      I also recommend involving the ISO TC/215 US TAG, as they share expertise with HL7.

      Use these buttons to endorse, share, or reply to the preceding comment by glenfmarshall.
April 3, 2013 8:26 pm

Thanks for the opportunity to comment. My last two health care providers maintained online records of all in-house tests, including vitals, lab results, problems, etc. This has been very helpful to me in tracking the trajectory of my health over the past few years, and I now consider this kind of ready access to personal health information an essential element of the doctor-patient relationship. Obviously, this should be the bare minimum goal, at least for health care providers who regularly work as part of larger or high-income organizations. It would be great if any government-encouraged standards also included the ability to track personal health issues in a way that is available to both the patient and the doctor throughout the year, and not just during physicals or sick visits.… more »

These items are happening now; government action to support these initiatives shouldn’t be held up by challenges like getting FitBits and smartphone apps up to “code” from a privacy perspective.

And, of course, there should be both carrots and sticks to get different health care providers’ systems to play well with each other. « less

Use these buttons to endorse, share, or reply to the preceding comment by iamherring.
    April 3, 2013 11:16 pm

    Welcome to Planning Room iamherring, and thank you for your comment. It sounds like you had a positive experience with online health records and would like to see them expanded. You mentioned that you would like the government to encourage standards to include the ability to track health issues throughout the year; could you say more about this? Do you mean that you would like the ability to add to your health records at any time?

    Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
      April 3, 2013 11:18 pm

      Yup, you got it.

      Use these buttons to endorse, share, or reply to the preceding comment by iamherring.
April 8, 2013 1:11 am

My husband has high blood pressure. I downloaded an app from an android app place online for free, called “StressCheck”. It reads your blood pressure by having you place your finger over the camera lens for two minutes. Then reads the data received to pet you know your stress level.
It has proven to be extremely accurate. I know this because I tested it before the nurse put a blood pressure cuff on my arm and took my pulse. The nurse recorded my results and her results and they matched. She tested my husband’s reading from the app hand hers and the results were identical. If that app were capable of linking to the Dr.’s offices then it was could enable tracking of my husband’s blood pressure. I downloaded the app for myself, I was switching and eliminating mediations… more »

…and I was using it three times/day. The reason being I live 150 mlles from my psychiatrist’s office and I was monitoring my stress level and texting her twice a week to let her know how I’d been doing on the new meds regimen.
Blood pressure readings in an office may be a poor example of a person’s general health, especially blood pressure. This type of app is one way of providing a more in depth picture of a consumer’s daily and long-term health. A picture both the provider and patient would be able to share. If linking the app with a computer or printer were possible. « less
Use these buttons to endorse, share, or reply to the preceding comment by tanja meece.
    April 8, 2013 12:52 pm

    Thank you for sharing your experience, tanja meece. What experiences have others had using mobile apps to manage their daily and long-term health?

    Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
April 26, 2013 8:37 pm

The government technology standards seem like they’ll impose on the natural market interactions regarding cost-benefit of security and privacy. Doesn’t imposing on that balance risk disrupting the delicate balance?

Use these buttons to endorse, share, or reply to the preceding comment by doctormd1985.
    April 27, 2013 11:28 am

    Welcome to Planning Room, doctormd1985, and thank you for your comment. In this strategic plan, ONC has not proposed to adopt specific technology standards. ONC wants to help promote eHealth tools that are useful for patients and providers. How can the government promote the development of these technologies, especially for underserved populations, without encountering the problem you’ve identified?

    Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
May 7, 2013 11:22 am

• As identified in the February 2013 GAO report entitled “Human Services: Sustained and Coordinated Efforts Could Facilitate Data Sharing While Protecting Privacy,” many challenges exist to efforts to promote data sharing and interoperability across state and federal agencies. The federal government can play a significant role in promoting cross-program integration – by demanding agencies to think and build systems as part of an integrated enterprise (as has been done through the Medicaid Information Technology Architecture and related 7 Conditions and Standards), providing funding in a manner that supports such integration (such as in the revised cost allocation rules in the OMB A-87 Circular pursuant to the ACA), address concerns about when and how information sharing is allowed… more »

…(such as through recent clarifications of FERPA through the Uninterrupted Scholars’ Act), and supporting the development of standards and requirements as well as specific tools that enable data sharing (as it has done with efforts like the Direct Project).
• While HIPAA is in place to address provider data sharing, there is a need for federal level privacy rules that apply specifically to consumer sharing (and relevant tools, involved entitites). Some states, like California, are beginning to look at this issue themselves, but a patchwork of state rules will not be as effective. Thus, we’d encourage ONC to tackle this challenge and provide guidance to federal lawmakers.
« less
Use these buttons to endorse, share, or reply to the preceding comment by bmorrow.
May 7, 2013 11:25 am

ONC can and should promote the sharing of information by supporting the development of standards and model tools that allow granular segmentation of data, in accordance with the work of the Data Segmentation Initiative and the December 2010 recommendations of the President’s Council of Advisors on Science and Technology. In furtherance of this capability, ONC should promote the ability of providers be able to mark any particular item as confidential at the moment of care.

Use these buttons to endorse, share, or reply to the preceding comment by bmorrow.

(Q#1) National Partnership survey data found that individuals with EHRs used online access to their health information to help them in at least three ways: (1) Personally find and correct errors or incomplete information in their medical record; (2) Understand their health condition better; and (3) Keep up with their medications. (Making IT Meaningful: How Consumers Value and Trust Health IT, 2012). Importantly, however, efforts to make data available to consumers should not focus on limiting data types, but rather focus on offering the array of functionalities, such as medication management and comparing treatment options, that consumers find most useful. Consumers should have access to all the data in their electronic records.

Use these buttons to endorse, share, or reply to the preceding comment by national partnership for women families.

(Q#3) Consumers need little encouragement in this area – the lack of care coordination and communication are the #1 problems consumers often cite with the health system. Instead, ONC needs to advance the capacity of providers and systems to receive and use the data. This requires both a technical focus and a cultural one, where patients are seen as equal partners and important sources of health information, and not just passive recipients of care. ONC should continue to develop and advance policies regarding patient-generated health data – in particular, standards and policies that make EHRs capable of uploading and digesting the data in a way that is easy for providers. ONC should also use the RECs to disseminate best practices for provider workflow around using patient generated data.… more »

…It’s also important 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.

ONC should build out the concept of a collaborative care planning platform where providers and consumers can work together to translate personal goals and clinical recommendations into meaningful and actionable steps that can be implemented in the course of people’s daily lives.
« less

Use these buttons to endorse, share, or reply to the preceding comment by national partnership for women families.

(Q#4) Advance directives are a critical and well-accepted means of empowering patients to identify the care they want, as well as the care they do not want in specific circumstances. The specifics of an advance directive constitute essential patient preference information that is necessary in order for providers to act according to their patients’ choices. Patients and providers would benefit significantly from this information being available at the point of care. ONC should explore how to make the content of an advance directive available electronically, rather than simply information about the presence or absence of an advance directive.

Care plans are necessary to provide a roadmap for achieving the best possible outcomes, as defined by both clinical and individual patient goals.… more »

…Care plans also present a valuable opportunity to collect and synthesize patient-generated data with clinical data across care settings. Ultimately, we are working toward care plans that are interactive, real-time, and operational across settings, as opposed to static documents. We encourage ONC to look at the Shared Care Plan platform currently being used by patients served by the PeaceHealth medical system in Washington, Oregon, and Alaska as a successful example.

Also, CMS should accelerate efforts to change payment away from the current fee-for-service (FFS) payment model. Medicare payment policies should reward or incentivize activities like care planning or use of health information exchange to share care summaries. « less

Use these buttons to endorse, share, or reply to the preceding comment by national partnership for women families.

(Q#1) ONC should explore how to make the content of an advance directive available electronically, rather than simply information about the presence or absence of an advance directive. Availability of electronic advance directive content provides essential information about an individual’s goals for their care, and therefore is also a foundational step toward development of a comprehensive, shared care plan.

ONC should explore how to advance the capacity of EHRs and health information exchange to support a comprehensive, interactive shared care plan platform. One option is to require a template (and create the necessary standards) for a pre-visit agenda that patients can complete to capture their goals for care and other information they deem relevant to their health and health care.… more »

ONC should specify how EHRs incorporate patient-generated health data about family history, and ensure that patients have the ability to augment or correct that family history online.
« less

Use these buttons to endorse, share, or reply to the preceding comment by national partnership for women families.

(Q#2) HHS should promote interoperability and actual exchange among unaffiliated entities, such as enterprise Health Information Exchanges (HIEs) exchanging with community/regional HIEs so providers, e.g. emergency rooms, outside of the enterprise can also have access. Meaningful Use, and the parallel certification program, is accelerating the development of necessary standards and services to make care coordination across health systems easy and efficient for both providers and patients. ONC should encourage the development of even more robust standards to foster information sharing across more participants in the system, including with non-Meaningful Use eligible providers like nursing homes, behavioral care, and home-based care. ONC should explore how to develop a voluntary certification… more »

…program, or how to align existing private-sector voluntary certification programs for providers not eligible for meaningful use incentive payments, with the standards and certification requirements of meaningful use to facilitate seamless data exchange between eligible and non-eligible providers. « less
Use these buttons to endorse, share, or reply to the preceding comment by national partnership for women families.
May 8, 2013 5:13 pm

What types of clinical data might be most useful for consumers to have in personal health decision making?

While raw clinical data might be of use to clinicians who have the knowledge and analytics to interpret and extract trends from the data it may not be particularly useful to a patient or family member making personal health decisions. Therefore, clinical data should be used to empower, educate and reinforce healthy decisions so that personal health goals are achieved through an e-enabled collaboration between the patient and their health care team.

Use these buttons to endorse, share, or reply to the preceding comment by rich_brennan.
    May 8, 2013 6:59 pm

    Welcome to Planning Room, rich, and thank you for the comment.

    It sounds like you’re saying that clinical data needs to be processed to make it helpful to consumers. How should this data be presented to consumers to “empower, educate, and reinforce” healthful choices?

    Use these buttons to endorse, share, or reply to the preceding comment by Moderator.
May 8, 2013 8:11 pm

There is increasing awareness of the importance of the social determinants of health in improving one’s health status and the health of a population. While it is not realistic or feasible for an electronic health record (EHR) to document structured data that would address some of the social determinants of health, EHRs could and should document a comprehensive health assessment (including social and cultural factors) and contain up-to-date, locally relevant community resources list. In addition, there could be stronger linkages between these two elements, such as requiring those community resource lists to identify, and providers to make referrals to, supportive and emergency housing options for homeless individuals when homelessness is identified in a health assessment.

Similarly,… more »

…the primary language data now collected in EHRs is vastly under-utilized. That data should alert the provider to the need for language assistance in all encounters (including referrals and follow-up) and translations for all written communications.
- California Pan-Ethnic Health Network « less
Use these buttons to endorse, share, or reply to the preceding comment by csanders.