§ 1. Overview

Increased access to, and more consistent sharing of, health information between individuals and providers create opportunities for them to work together in making choices about health care. The federal government has taken several steps to help providers and their patients better understand and support the sharing of health information. These steps (explained below) use health IT as a tool to improve communication. This in turn encourages shared decisionmaking among doctors, patients, and other members of the care team – enhancing the trusted doctor-patient relationship by encouraging consumers and providers to place equal value on an individual’s opinions, preferences, and choices and to reach and implement decisions together. In this post, ONC is looking for feedback on these steps so far, and ideas for how they can be improved or expanded in the future.

To discuss shared decisionmaking in more detail, go to Supporting ”shared decisionmaking” through health IT.

§2. New regulations
New federal regulations provide financial incentives for eligible hospitals and providers that adopt and “meaningfully useEHRs. Hospitals and providers must allow patients to “view, download, and transmit” their data.
  1. When individuals can view their health record stored in an EHR, they are able to play a more active role in their care, by, for example, allowing them to serve as a “second pair of eyes” on the information in their clinical record.
  2. Being able to download this information allows consumers to enter their health data into apps and tools that help them monitor their health at home, or better understand their overall health and what is involved in the care they receive.
  3. When patients can transmit this information, they can choose to share their EHR with their other providers. This ensures that everyone treating the patient has a full picture of his/her health history and treatment plans.

Enabling providers and patients to review and discuss the same health information can create a culture of team-based care where everyone’s role–from the physician, nurse, and allied health professional, to the consumer–is respected and valued in reaching optimal health care. The result should be fewer misunderstandings about available treatment choices, potential outcomes, and the patient’s personal preferences.

  • Will enabling people to access their information electronically change their behavior to become more engaged health care consumers? What else will it take for patients to take an active role in their health and health care?
  • How can the federal government use regulations and policy to expand consumers’ participation in their health care and health choices through the use of information technology?

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

Current Efforts: Enabling information access

Identifying useful health information

Supporting “shared decision-making” through health IT

§3. Education and outreach

ONC’s efforts to provide educational materials aim to help consumers become more comfortable with health IT’s capabilities, empowering them to become more active in their health care. Other materials help providers understand the value of well-informed patients who can evaluate health information and use tools to improve their health. The Blue Button Pledge Program enlists health care providers, large employers, health insurance plans, and other participating organizations (i) to provide individuals with secure online access to their health records, and (ii) to educate them about how to access this information and use it to improve their health.

ONC is using HealthIT.gov to provide guidance to providers and patients about (i) how to talk with each other about EHRs and (ii) how technology can support greater involvement of patients in making health decisions. An animated video helps explain how access to EHRs can help improve the care people receive from their primary clinician, specialists, and pharmacists.

People can download a memo (PDF) that explains their rights under the Health Information Portability and Accountability Act (HIPAA) to have access to their health information. They can take the memo to their doctor’s office or insurer to request copies of their health information. The memo also includes links to a variety of educational resources, including a video that explains patients’ rights.

  • How can government policies and programs build individuals’ skills and confidence in making decisions about their health and care, and provide resources to assist those less able or inclined to partner actively in their health care?

For other discussions about developing educational and training materials, see:

Current Efforts: Enabling information access

Current Efforts: Empowering consumer action

Decreasing health disparities through health IT

§4. 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).

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March 28, 2013 11:18 pm

Why can’t provider notes be included in the clinic records of my visit? What consistutes the provider’s notes? I asked this question after my provider spent the most of my visit typing, and I found very little documentation in the medical records from the visit. When I asked medical records staff, why was there so little documentation in that section, the response was… it was probably in the provider’s notes. Why can’t I have these notes? On my HMO, where the provider can leave after visit notes, often they are empty. On the providers that do follow-up with after visit notes, it really great, and it helps me stay on track of the things I need to do. Require providers to document consumer visit in good faith.Sandra

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    March 28, 2013 11:47 pm

    Do you have any suggestions for what specific information the government should require that providers include in after visit notes?

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April 6, 2013 3:03 pm

I love sharing information with my patients. Since starting with EMR in 2006, I give every patient a copy of his/her note at the end of every visit. Most patients love it, and the ER doctors and specialists love it as well. I was called a revolutionary by a respected colleague two years ago but am glad to see research published on the benefits of information sharing with our patients. It is key to patient engagement for them to own not only their information but their health. Patients should be empowered. In the end, though, they still need the guidance of excellent PCPs who stand at the ready to guide them.

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    April 6, 2013 9:37 pm

    Thank you for your comment, hrdahlman. It sounds like you are suggesting a need to balance information sharing with guidance. How have you been able to accommodate that balance in practice?

    Do you have any suggestions for what the government can do to encourage patients to take ownership of their information and health?

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      April 8, 2013 8:39 am

      1. Existing Patient Portals: Let’s give patients access to their information. First, we need challenge doctors and other healthcare providers to accept the wisdom of information-sharing with patients (perhaps giving mental health an exception, due to sensitive information). Then, challenge the vendors to expand patients’ access to their charts through existing secure Patient Portals (eCW has an excellent one). Also challenge them to provide a mechanism where a patient can upload information to their chart which, upon review and categorizing by PCP or primary care office, would find a place on the shared electronic medical record.

      2. HIE access for patients: I favor single secure login wherever possible. I believe patient portals have to have banking-level security already,… more »

      …so perhaps make a way for a patient to see his/her health information that is on HIE from within the Patient Portal of his/her respected PCP. 1st, this increases the market value of providers using EHR. 2nd, it accounts for security concerns. 3rd, it allows patients to see what is on the HIE. How HIE would be available to patients strictly on their own information? Not sure how to solve this. Fingerprint/live doppler/heat-sensitive access? Banking-level security with government-sponsored Patient Portal? The latter idea gets away from single sign-in, though.

      The government should support patient-empowerment movements like PCMH. « less

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April 14, 2013 8:04 pm

I do not understand why the government of the US is involved in this process. The US constitution, Article 1, section 8 delineates the role of govt in the arts and sciences: “To promote the Progress of Science and useful Arts, by securing for limited Times to Authors and Inventors the exclusive Right to their respective Writings and Discoveries;”
The founding fathers clearly hoped that the govt would stay out of affairs that are best solved by the private and financial forces which are, by nature, more responsive to the happenings and influence of the consumers, individuals and businesses.
Already, healthcare is encountering problems due to the fact that it has been separated from standard influences of our culture.
Patient decisions are minimally inpacted by EHR. They are… more »

…majorly impacted by the physician taking time to listen to their concerns and answering their heartfelt questions. Trust and listening skills are not built by EHR.
Furthermore, an extremely important part of a physician-patient relationship, compassion – sharing in our patients’ suffering – is not achieved through or facilitatied by an EHR.
Thus, ‘meaningful use’ is more about what is important to third parties than to the physician and patient.

Below, hrdahlman writes: “It is key to patient engagement for them to own not only their information but their health.”
I summarize for my patients’ visits with notes we have made during our discussion and pictures that I have drawn and links that I have recommended. More important than handing them a copy of their record is that they have access to me when changes occur and questions arise. I am accessable partly because when a patient departs, my notes are already done and I am free to answer a call or move on to the next patient. My colleagues are fatigued by typing into their EHR’s during, after, and during the night of their visits. Fatigue does not make for a friendly and compassionate physician. That is much more ‘meaningful’ than an electronic record. It also generates higher quality care (as big business’ employee benefits departments are coming to realize.) « less

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    April 15, 2013 12:05 pm

    Hi lets get a grip and welcome to Planning Room.
    ONC’s work on EHRs and health IT is governed by HITECH Act regulations. The Health Information Technology for Economic and Clinical Health Act (HITECH Act or “The Act”) is part of the American Recovery and Reinvestment Act of 2009 (ARRA). For more, see: http://www.healthit.gov/policy-researchers-implementers/health-it-rules-regulations
    It sounds like you don’t think Health IT can assist providers in delivering compassionate care. How, if at all, do you see such systems being valuably utilised by healthcare providers in order to improve their service to patients rather than draining resources and time?

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      April 15, 2013 12:59 pm

      Correct, in that I do not think it helps primary care providers deliver quality compasionate care. My system is perfectly adequate currently. From the exam room I can link to our hospital’s data base. I receive faxes from the specialists’ consults the same day. I receive lab and xray from outside facilities in 1 day. An EHR would just add more hastles to our day. I already e-prescribe, e-bill and have e-medicine lists, allergy lists and diagnosis lists. I have medication crosschecking prescribing modules and I have Up-To-Date module for current care protocols. The only thing I don’t do is e-records.
      I admit that EHR would be available to the specialists and that would facilitate their record keeping, but as a solo primary care practice including OB and inpatient care… more »

      …as well as 30% of my time being spent on regional and national efforts, I cannot afford the time or expense to launch and pamper an EHR for the sake of the specialists charting. I provide them with a succinct medical record when referals are made. They are charging huge fees for 15 – 60 min spent with the patient. Yet they are heading to the parkinglot at 4:30 PM while I am there till 8-10 pm most nights and later when on call. Primary care small practices cannot afford the expense. There is no return on investment. My primary care colleagues that have started EHR’s and their staff have suffered greatly and some never even received the reimbursements to which they were entitled.
      I did not intend to whine, it just does not make sense for my staff, my patients or my sanity. My patients receive excellent, up to date, compassionate care with time available for listening and excellent access to our office.
      I do not see how an EHR will improve that.
      If it is true that the marketplace should decide, we are getting requests every day from patients wanting to switch from practices with an EHR to our practice. So it would seem that the consumer doesn’t see the benefit either. « less
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        April 15, 2013 7:57 pm

        Thank you for your reply, lets get a grip. Do you have any suggestions for what ONC can do to enhance the ability of small primary care practices to deliver quality compassionate care and encourage patients to become more engaged in their health care?

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April 25, 2013 3:31 pm

We have achieved tremendous momentum of the Meaningful Use of HIT within the 4 walls of hospitals and eligible providers, e.g. traditional health care encounters. Given what we know about where health happens, in the in between, in our homes, neighborhoods and communities, we should consider interesting incentives the promote virtual care and mobile care, and significantly lowers the cost of overall care. For example, 48 hour shared care plans, 30 day shared care plans with virtual support of reminders, medication filling, adherence could be automatically triggered through mobile phones. Thinking outside the box (the 4 Walls) should be encouraged for simple low cost interventions. These experiences will require ‘attitude” adjustment as providers gain experience relying on the voice of person @ the center care.

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    April 25, 2013 5:21 pm

    Thank you for your comment susanchull. Does anybody else have ideas for incentivizing virtual and mobile care outside of the 4 walls of hospitals?

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May 7, 2013 11:13 am

In order for EHRs to empower parents and their children, and change their behavior, EHRs and related consumer-facing elements of the record must:
• Open up new communication channels that will improve access to providers and services. These new channels (whether through e-mail, texting, or online) can allow parents to receive reminders, schedule appointments, submit forms, make payments, and discuss their child’s care at times and in a manner that works best for them. Tools like mobile monitoring devices can also help the child and parent consumer remotely communicate important health information, such as glucose levels, to providers.
• Enable a parent to view, print, save, and export a child’s data in a format that can be used, reused, and tracked. For example, the U.S. Department… more »

…of Health and Human Services is working on making a “Blue Button” available to veterans and eventually others that allows consumers to download their health information for their own use from secure Web sites operated by medical practices, hospitals, pharmacies, insurers, and laboratory services.
• Involve families in overseeing the quality of their records. For instance, a parent can review and manage a child’s health record through a patient portal that allows them to identify missing information that could impact the child’s care, rectify any errors, and use the data to populate consistent information across family records and applications.
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May 7, 2013 11:16 am

Families will be more likely to use and share information in their records if they trust the providers and the system to keep their information private and secure. In order to achieve that, EHRs must be required to:
• Educate families on applicable privacy policies and options and enable them to have meaningful control of their own information. For instance, HIT can help consumers embed privacy specifications into the data in their records in order to address what data are available, to whom, and for what purpose. For example, a parent can authorize periodic transmission of immunization records to school authorities and immunization registries while withholding other clinical records.
• Maintain an immutable audit trail that includes read, write, edit, and download tracking. Such systems… more »

…help families monitor the use of their data and can build trust, when combined with vigorous enforcement of privacy rules.
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(Q#1) Consumers can be true partners in health and health care only if they have access to comprehensive and accurate information they need to be engaged in care. It is absolutely critical that health IT systems enable providers to safely and securely share information, not just with each other but with patients, families, and other designated caregivers. Requiring that patients have the ability to view, download, and transmit (V/D/T) their own health information is a monumental advancement for consumers that should be expanded beyond the meaningful use incentive program. ONC should be working with stakeholders to ensure that consumers can V/D/T their health information using diverse, interoperable, and accessible technology platforms, including mobile technologies, and in the patient’s… more »

…preferred language. To be truly transparent, we urge ONC to require that V/D/T criteria apply to entire medical records, such as visit notes. ONC should build upon experience from the Open Notes initiative, which provides patients electronic access to read their doctors’ visit notes. In a quasi-experimental study of Open Notes, the vast majority of participants having access to their notes reported an increased sense of control, greater understanding of their medical issues, improved recall of their plans for care, and better preparation for future visits. In accordance with the recent White House report on health disparities, ONC should continue its efforts, such as app challenges, to foster the development of a wide array of consumer eHealth tools for different health management purposes and diverse audiences.

NPWF survey data show that respondents whose doctor has an EHR (“EHR respondents”) and who have online access to their health information in that EHR see greater value in EHRs for both their providers and themselves. Online access is also correlated with enhanced trust. Among EHR respondents, 26% had online access to their health information, and they were consistently more positive about perceived value of and trust in EHRs. Users are more likely to say they trust their doctor and staff to protect their patient rights. Those with online access are also more likely to say they feel well informed by their doctors and staff about how their medical information is collected and used in the EHR system; their right to be informed and exercise choice before personal medical or health information is made available to others for purposes beyond health care; and their right to see all or parts of medical record – and have a copy made. (Making IT Meaningful: How Consumers Value and Trust Health IT, 2012).

The National Partnership offers the following recommendations to help patients take a more active role in their health and health care: (1) Value and privacy should be the dual foci of education and engagement efforts; (2) Consumers of Hispanic origin and underserved individuals should be key target audiences for education and engagement efforts; (3) Physicians, nurses and other clinicians should play key roles in engaging consumers with information about privacy and value of health IT; and (4) ONC and OCR should track over time changes in consumer privacy views and who comprise the most comfortable and the most worried population segments.
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(Q#2) HHS should consider making public the meaningful use registration and attestation database to enable consumer choice of providers who have the ability to electronically exchange health information, and those offering view/download/transmit capability. National Partnership survey data show that 73% of respondents whose doctors use paper records want their doctors to switch from paper to electronic records. This indicates that a significant percentage of patients would consider switching doctors based on their EHR capability, and underscores the importance of making meaningful use registration and attestation information – on an individual provider level – publicly available. (Making IT Meaningful: How Consumers Value and Trust Health IT, 2012).

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May 8, 2013 8:09 pm

While ONC is to be commended for its activities to raise awareness and educate health consumers about the benefits of health IT, much more outreach and education is needed in diverse and underserved communities, especially among racial and ethnic minorities, limited English proficient individuals, seniors, those living in rural areas, and individuals with disabilities. Many of these populations have experienced historical barriers to high quality health care and have legitimate issues of mistrust of both health care providers (who often excluded them or discriminated against them in the provision of care) and the federal government. Tailored and community-based outreach, education, and engagement with these populations is essential to achieving the full potential of health IT to support the improved health of all Americans.
-California Pan-Ethnic Health Network

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