§ 1. Benefits and challenges

Shared decisionmaking is a systematic approach to engaging patients in

  1. understanding the options they have in how to proceed with their care;
  2. exploring their preferences and values, along with the best medical evidence; and
  3. selecting an option after considering risks and benefits in a personal context.

Shared decisionmaking was first developed to help support conversations between provider and patient in life-threatening conditions. However, it can also work well for kinds of health care in which there are multiple options, and patients are able to choose one option over others. When evidence supports more than one approach, and the available treatment/testing options involve significant tradeoffs, a patient’s personal values and preferences should drive decisions.

As ONC policies and initiatives like Blue Button make health information more accessible, providers and individuals will require guidance on how to use technology to support shared decisionmaking. Providing that support will be an important focus of federal health IT efforts. Possible steps government could take are suggested below.

§ 2. Encouraging innovation

Using HealthIT.gov, the government could showcase “early adopters” of health IT and eHealth tools, as models of innovative ways that providers and patients are using health IT to select the most appropriate treatment options for the individual patient. Health IT can communicate the individual’s choice to other providers (such as specialists, pharmacists, and facilities where the individual receives care) so that additional care recognizes his/her preferences. This can avoid unnecessary or unwanted tests and treatments. Examples of this are: including an “advance directive” in a person’s health record, or noting that a certain drug had too many side effects for an individual to take.

  • How can the federal government help providers engage in more opportunities for constructive shared decisionmaking?
  • To encourage shared decisionmaking, would it be useful for the government to support development of such tools as decision aids, use cases, or reference libraries?
§ 3. Identifying trends

The government wants to identify trends in the health care market related to:

  1. shifting attitudes about individuals’ access to health information;
  2. how people can use this information to make better health care decisions and personally relevant care plans with their providers; and/or
  3. consumers’ and providers’ acceptance and use of health IT.

Identifying current trends in the health care market can help the government decide where and how to best intervene. The government could draw on ONC’s federal advisory committees or on Blue Button Pledge Program participants, provider champions within communities, and others to find this information.

  • What trends are you seeing that will influence how patients and providers interact using technology?
§ 4. New regulations

The government could create new regulations or policies to promote shared decisionmaking through increased access to health information.

  • What concerns do providers have about risk or risk sharing that cause them to limit their engagement in these information-sharing and decision processes, in order to avoid misunderstandings, poor health outcomes, or other potential problems?
  • What policies have providers implemented in their practices that might serve as examples for how to address these concerns, and so promote more provider and patient engagement in shared decisionmaking through health IT?
  • How can federal policies help maintain an appropriate division of responsibility for shared decisionmaking between providers and patients?
  • Are there policies or activities where the federal government can help reduce risk for health IT and for developers who are creating decision aids for providers and patients to use in evaluating and selecting treatment options?
  • What level of detail would be most useful in regulations to support new health IT products that promote shared decisionmaking?

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

Current Efforts: Enabling information access

Current Efforts: Shifting attitudes

Identifying useful health information

§ 5. 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 27, 2013 2:33 pm

Consumers are legally required to be informed (legal Doctrine of Informed Consent) before agreeing or not to specific medical proceducre or treatment. To make the health care market work competitively, as any other competitive market, consumers must be able to access relevant health information from sources such as the various federal government sources (e.g., HCQR, Medicare, etc.)to share with their health care provider(s) to help assure true “informed” consent. In addition, the cost of all the options discussed must be part of this “informed” consent conversation. It is critical to note that the legal Doctrine of Informed Consent requires that the communications be in layperson language so that the consumer can make a reasonable and truly informed decision.
Roy J.… more »

…Bussewitz, R.Ph., J.D.
Former lecturer of Health Law (also taught Health Care Delivery in the U.S., and an introductory pharmacology course, “Drugs Used and Abused”) at the University of Wisconsin-Milwaukee, Cost Containment Specialist for the Department of Health (WI), and Legislative Assistant (Health) for U.S. Senator Gaylord Nelson (WI). I have been retired since March 2006 and currently live in Wilmington, NC. ***Phone number redacted by Moderator*** « less
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    March 27, 2013 5:46 pm

    Thanks for your comment, royjbussewitz. How could Health IT be used to help consumers understand their decision in layperson language, so that they can make a truly informed decision?

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      March 28, 2013 4:24 pm

      It’s the existing Doctrine of Informed Consent that requires health care providers to communicate information in lay language so patients can make truly informed decisions, not HIT. However, HIT could and should move beyond its initial role of simply being a conduit to allow patients’ access to more medical information (e.g., research/studies/reports funded by the federal government… which, of course, are paid for to a great extent with health care consumers tax dollars) to an active role of helping to assure that the information conveyed is in language understandable to patients. Specifically, the various HIT organizations, including, ONC, could help persuade all federal health care agencies and/or Congress, to require that all federally funded studies contain a “substantive”… more »

      …Summary written in lay language… this could be a prerequisite for federal grant money etc. Information content can, and must, be written to allow consumers to be more informed about their medical procedures, medical treatment, and pharmaceutical options. Other content contributors include the various health care provider professional associations. Those associations should work with their members and their respective professional schools, to require writing parallel study results for the consumer. HIT has an active role there as well because every health care profession has an active HIT component. The bottom line of this work product, which will be ongoing, is that it will create the optimal health care system based on allowing patients, with real time access to more lay information, and the help of their health care provisdders, to make the best truly informed decisions about their own health care. « less
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        March 28, 2013 6:49 pm

        Thank you for your reply, royjbussewitz. What do other commenters think about royjbussewitz’s suggestion that the government should require that all federally funded studies contain a substantive summary written in lay language?

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March 28, 2013 11:01 pm

I work in a public library and that kicked-out the Dewey Decimal system to organize the collection, in an effort to make the collection more browseable. Do the same with medical language. I support layperson language, if one wants to truely open information up for the consumer. Sandra

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March 28, 2013 11:41 pm

While I value privacy and security, it means nothing if the information isn’t accurate. Include accurate data in the legislation. Sandra

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April 2, 2013 3:41 pm

Isn’t shared decision making more than “informed consent?” I thought that this was referring more to ensuring that providers understand the full scope of options they might have when confronted with a medical decision.

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    April 11, 2013 12:14 pm

    Hi lee jarm. Welcome and thanks for commenting. royjbussewitz appears to have identified informed consent as one issue for government to focus on in helping a provider communicate a patient’s treatment choices with other relevant providers. Are there other ways that you think the government could help facilitate this goal?

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      April 12, 2013 10:41 pm

      To moderator – perhaps some guidance around standardizing or creating guidelines for content review of decision aids. There are several organizations which produce decision aids intended to help people make informed decisions about their medical conditions. It is likely difficult for a consumer to know the level of quality of the information and/ or content of the decision aid.

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        April 13, 2013 9:15 am

        Thank you for your comment, lee jarm. Educating patients through health IT is an important part of ONC’s plan going forward. You can read more about what ONC has already done and also comment on what they should do in the future, here.

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May 1, 2013 3:43 pm

In some ways, I believe this is an excellent example of the old adage, “When the only tool you have is a hammer, everything begins to look like a nail.” Certainly the EHR could be a portal for the patient to seek information, become more informed, etc. But I think that decision making process centers around a personal relationship between the patient, their family and the provider. Just because EHRs can solve many problems, doesn’t mean it is the resolution to them all.

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May 1, 2013 7:20 pm

Govt has regulatory and money power to create the ecosystem where EDS (essential data set) is available at PoC (point of care). HCIT standards including HL7 C-CCD can ensure every care giver has access to EDS. As an emergency physician I want to know the following: problems,drugs used, allergies and similar info at a minimum. Patient as a passive recipient of care is passe, active partner in care is the new realty and HCIT needs to scale to meet this. Giving access to HIS-EMR and allowing patient to maintain a PHR are two sides of a coin that empowers patient to actively engage in his/her care.

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    May 2, 2013 11:02 am

    Welcome to Planning Room and thanks for the comment thanga prabhu. From your experience as a physician have you seen the benefits of EMRs in helping patients become more active in their care?

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      May 2, 2013 9:10 pm

      Yes. We ran a PHR (smart card based portable health record) which patients adopted to track blood sugar, BP, vitals, mood etc. Face-to-face encounter is a brief interlude to the continuous healer-patient engagement for chronic diseases, obesity,psychiatry, elder care etc. In spite of the rush that ED workflows have, I take time to explain the disease/problem and get patient buy-in to actively engage them in care. I have seen many myths crumble…patients dont understand medicine, they will lose the records, they will shop around using the info, can lead to litigation. etc.

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        May 2, 2013 10:43 pm

        Thank you for your response, thanga prabhu. Have others had similar (or different) experiences with EMRs in helping patients become more active in their care?

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May 7, 2013 11:29 am

• Trends indicate that decision support tools can and are improving the interactions between patients and providers, by helping patients’ understand when it is important to contact the provider (or not) and reminding them about the need for follow-up and self-care. Home-based decision support tools can provide tailored, understandable self-management information that is responsive to an individual’s health or disease experience. For example, Web-based asthma management sites allow children and parents to gauge the severity of an episode and determine appropriate medication strategies or when to seek medical help. In addition, it can help a consumer follow their own care, tests, and medicines, and support them helping the provider make relevant decisions, such as when the tool identifies… more »

…contraindicated prescriptions, prompting a conversation between patient and provider to see whether they’re actually taking the medications and to resolve any problem.
• Electronic communication improving information available to providers through the use of pre-visit questionnaires, surveys, assessment tools, remote monitoring devices, and the like, which allow a patient and/or family member to ensure that a provider receives critical information, despite the time pressures or timing of an appointment, or their absence from the appointment itself (in the case of a remote family caregiver who has important information to share).
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(Q#1) Shared care plans also offer a valuable platform for shared decision-making, where patients and their loved ones can play leading roles with their care team in identifying and pursuing the health and wellness goals most meaningful to them. ONC should encourage, if not require, providers to make shared decision-making tools and relevant resources available on their patient portals as part of Meaningful Use.

The process of collecting and responding to patient-generated health data will hopefully move the culture of health care to an active partnership between individuals and their health care providers. The information patients and their family caregivers provide about their abilities and support needs for self-management complements clinical information generated by care teams to… more »

…provide a comprehensive, person-centered view of an individual’s health. Use of both clinical and patient-generated health 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. Understanding of the full range of factors affecting a patient’s ability to get and stay well – including life situation, home environment, personal preferences, and caregiver status – will support treatment recommendations that patients are more likely to follow, and help to identify needed services and supports. ONC should explore to how create the ability for an EHR to generate a referral for shared decision making services, such as arrangements for additional information and supports necessary for addressing barriers to treatment recommendations.

ONC should also invest in the creation of eMeasures that measure both decision quality and concordance, or how well treatment recommendations aligned with patients’ previously stated preferences. If measures are created, they can be used for improvement and payment in a multitude of HHS programs. « less

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(Q#1) As providers increasingly begin using EHRs and other forms of health IT during clinical encounters, it will be important to balance screen time and (patient) face time. A recent study published in the Journal of General Internal Medicine that medical interns spend about 40% of their time on computer-related tasks and about 12% of their time with patients. Patients, families, and other personal caregivers should be included in computer-related tasks, as appropriate. For example, if a physician is reviewing a patient’s medication history on the computer, the physician could invite the patient to join (or turn the computer screen toward the patient) in the medication reconciliation process (asking the patient to confirm whether the listed medications and doses are correct, to the patient’s… more »

…knowledge). Using technology in concert with patients and families will cultivate better patient-provider relationships, and enhance the care process.

The advancements in mobile health platforms cannot be ignored. It will be essential to ensure that all health IT forms can connect effectively to cell phones, smart phones, tablets, and other forms of mobile technology that consumers use in their daily lives. ONC should be working with stakeholders to ensure that consumers can securely view, download, or transmit their health information using diverse and accessible technology platforms, including mobile technologies, and in the patient’s preferred language.

A recent survey by the National Partnership found that when patients have online access to their health information, 80 percent use it. Online access has the potential to be much more valuable to patients if the functionality can be expanded and improved (for example, for communication or correcting information), and if doctors or their staff would themselves play a role in increasing the effectiveness and use of the access they offer. (Making IT Meaningful: How Consumers Value and Trust Health IT, 2012).
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May 8, 2013 8:12 pm

There are almost no tools to support shared decision-making that are culturally and linguistically appropriate. At most, some tools have been translated into Spanish but are not available in any other languages. Since shared decision-making also requires consideration of cultural beliefs, attitudes, and norms about health and health care, it is especially vital that the tools are not simply translated from English but address the specific cultural factors relevant to diverse and underserved populations. ONC can partner with and encourage OMH, AHRQ, NIH, and the Patient-Centered Outcomes Research Institute to prioritize and fund the development and validation of shared decision-making support tools that are culturally and linguistically appropriate for diverse and underserved populations.
-California Pan-Ethnic Health Network

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