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Medicare-Medicaid covers approximately one third of patients nationally but we expect that providers participating in the Meaningful Use incentive program will make benefits like patient portals available to their entire patient populations, rather than only their Medicare and/or Medicaid beneficiaries. In this way, the meaningful use of certified EHR technology will gradually fold in large numbers of people. To reach even greater numbers, ONC should facilitate the development of public reporting on which providers offer consumers the ability to download their own health information, use secure messaging, etc., by making the CMS data from meaningful use attestation publicly available. In alignment with HHS’s Open Health Data initiative, this could enable private sector entities to develop… more »

…websites consumers can use to select providers that offer online access and other electronic tools. We believe that would incentivize more non-meaningful use eligible providers to begin offering these tools as a competitive market advantage. « less

Requiring that patients have the ability to view, download, and transmit (V/D/T) their own health information was a monumental advancement for consumers in Stage 2 of Meaningful Use. We strongly encourage ONC to plan and implement corresponding beneficiary engagement and education efforts that will be necessary to fully realize the potential of patient access and use of their electronic health information. For example, current Medicare beneficiaries who download their claims data from CMS via Blue Button may easily be overwhelmed by the format, amount, and complexity of the information they receive. It is incumbent upon HHS and ONC to ensure that providers make consumers aware of (and link directly to information about) tools like iBlueButton and other applications that upload, organize,… more »

…and display this information in ways that are understandable and useful to patients, families, and providers.

ONC should be working with stakeholders to ensure that consumers can view, download, or transmit their health information in the patient’s preferred language. ONC should consider variations in both health literacy and health IT literacy, which may affect consumers’ likelihood and ability to electronically access their health information. ONC should develop guidance and resources promoting online patient access in plain language (as well as non-English languages) and accompanied by graphic explanations, which are often helpful to patient understanding.

HHS should also consider making very public the meaningful use registration and attestation database to enable consumers to identify and choose providers that have the ability to electronically exchange health information, and those offering View/Download/Transmit capability.
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A recent survey by the National Partnership on consumer trust and value in health IT found that perceived value of online access is driven both by patient preferences (such as for communicating in person) but also significantly by available functionality, such as secure messaging, making appoints and refilling prescriptions online, correcting information, etc.. Online access has the potential to be used on a more widespread basis if providers partner with patients in designing and selecting the functionality most useful to them. It is also essential that doctors or their staff themselves play a role in increasing the effectiveness and use of the access they offer. Survey data from NWPF shows doctors and nurses are trusted by patients. When patients have online access, 80 percent use it.… more »

…(National Partnership for Women & Families, Making IT Meaningful: How Consumers Value and Trust Health IT, 2012). « less

(Q#4) First, we can inform patients of their rights but it is even more important to make access to health information easy for patients and their family caregivers. Advancing the Blue Button concept in the public and private sectors is key to this effort. In terms of education, ONC should use the MyMedicare.gov website, the Medicare handbook and other relevant Medicare consumer publications, and the Medicare Annual Wellness Visit as opportunities to inform consumers of their right to access their health information, and the benefits of doing so. It should consider similar avenues in Medicaid and CHIP.

We also recommend that the automated Blue Button feature (which directs a provider to transmit an individual’s health information to another location of the patient’s choice, such… more »

…as from specialist to primary care portal or non-provider affiliated personal health record) be a part of all CMS and ONC outreach efforts, policies, and models that advance view, download, and transmit capability.
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(Q#1) Recording and implementing patient communication preferences are vital to ensuring that patients receive information in a medium that is most accessible and meaningful to them, which promotes enhanced patient and caregiver engagement and follow-up. EHRs should have the capability to differentiate preferences for varying kinds of information. For example, individuals may want to receive lab results by email, but prefer phone call or text message reminders regarding upcoming appointments for follow-up care.

It is also critical to enhance non-English patient-specific education materials. ONC should encourage, if not require, providers to strive to offer materials in the language spoken by their patients, no matter what that language is, and certainly in the most common languages… more »

…other than English. Individuals may need or want to receive their health data in languages other than English, to ensure comprehension and correct treatment.

Providers remain one of the most trusted sources of information, and play a vital role in helping their patients understand what information is now easily accessible to them and how they can use it. It is also important for providers to expressly encourage their patients to access and use this information to participate in their own care, both during the visit and in signs and brochures visible in the waiting room and even the examination room. ONC should also consider developing a well-vetted set of materials that physician practices could use routinely, about both the patients’ right of access but also the benefits of online access. These materials should be available in multiple languages.

ONC should be using the infrastructure and support offered by the Regional Extension Centers (RECs) to train providers on best practices for engaging patients, including ways that providers can integrate online access for patients into their own workflow. High-performing practices focus on how it, as a practice, can benefit from online patient access; those benefits typically include significant efficiencies in provider and patient workflows. RECs should help providers understand best practices. RECs could also help train providers in how to convene a group of patients to collectively create strategies that enhance patient access and use of their health information.
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(Q#3) Survey data show that consumers are highly supportive of having online access to their health information, when it’s offered in easy and well-managed ways. (Making IT Meaningful: How Consumers Value and Trust Health IT, 2012; Markle Foundation 2011). It’s critical to ensure that electronic information made available is useful and beneficial to patients and their family caregivers. Providers should offer different functionalities for online access, such as for communication or correcting information.

ONC should encourage and/or require translation of patient health records into the patient’s preferred language, at least for the most common non-English languages. Encouraging patients to electronically access their health information is important, but it is critical that… more »

…patients and their family caregivers understand the records they are accessing.

We also urge ONC to add a criterion to the Meaningful Use program measuring timeliness of response from providers to their patients who use secure messaging. We do not propose requiring a specific timeliness standard, only the measurement and reporting of timeliness rates.

ONC should use the HIT Consumer Assessment of Healthcare Providers and Systems (CAHPS) questions to assess usefulness of providers’ use of health IT. ONC should also work with HHS to integrate a small number of the most important HIT CAPHS questions into other CAHPS surveys to maximize patient experience data on providers’ use of health IT.
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(Q#2) We encourage ONC to continue and expand its innovation challenge and award programs. The advent of Stage 2 of the Meaningful Use incentive program, particularly the ability of consumers to view, download, and transmit their health data, will likely increase the demand for new apps and other eHealth tools. ONC should leverage this development as it unfolds. Additionally, developers should be encouraged, or even required, to work with consumers in the design and development of applications and other eHealth tools in ONC-sponsored challenges. Designing systems with the audience they are built for will help to build consumer trust and buy-in; fostering collaboration may also help ensure that key expectations of consumers are met.

(Q#3) ONC should encourage providers to strive to offer patient-specific education materials in the language spoken by their patients, no matter what that language is. Under the auspices of the Meaningful Use incentive program, we fully support utilizing data collected about a patients’ preferred languages to provide access to meaningful, useful education materials. ONC should consider adding to Meaningful Use a requirement to make patient-education materials available in the top five non-English languages spoken in the state where the Eligible Provider/Eligible Hospital is located. This will promote greater relevance to the community in which an individual lives.

Government policies could also invest more heavily in developing shared decision-making tools which would enable providers… more »

…to partner with patients in considering and selecting treatment options for conditions where there is no clear path for the “best” care.
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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).

(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.

(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.
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(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

(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.
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(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

(Q#1) Patient-generated health data engage patients and their family caregivers as sources of information and positions them as equal partners with providers in their care. Providing patients with an ability to offer amendments to their health record or reconcile competing information online is one method of engagement, as patients are often the first to identify errors in their own records.

It is important for ONC to ensure that EHRs are capable of integrating PGHD in the areas that are most valuable to providers and patients. These areas could include depression screening, functional status, and much more. Making the information usable by and useful for providers is essential.

Secure messaging is another important source of patient-generated data. Allowing secure messages sent… more »

…and received by a family member or other caregiver approved by the patient is advisable, and would reinforce their essential role as members of the care team. We also urge ONC to begin measuring timeliness of response from providers to their patients who use secure messaging. We do not propose requiring a specific timeliness standard, only the measurement and reporting of timeliness rates. « less

(Q#2) Providers should clearly explain to patients and their families and other personal caregivers the value of PGHD collection and submission to the patient’s health and health care. (How will availability of PGHD enhance a patient’s quality of life or help with a specific health condition? How will PGHD help a patient’s providers and their subsequent treatment recommendations?) Providers should also have a process in place for providing feedback to patients regarding PGHD they have provided.

(Q#3) The kinds of information that consumers believe have highest value for their providers to know, but are not limited to:
-Goals for care and wellness
-Medication allergies and non-tolerated medications (i.e., those which in the past have caused negative side effects for the individual), including over-the-counter drugs and herbal supplements
-Family (or other personal) caregiver status (using DECAF ) and additional professional care team member name(s), contact information, and role(s)
-Family history
-Functional limitations, functional status, and/or Activities of Daily Living info
-Supports and services necessary for independent living
-Patient values and preferences for care (e.g., advance directives, no blood products, etc.)
-Patient experience
-Behavioral and mental health… more »

…history and status, including depression and pain scales
-Identification of problems or concerns from the patient’s perspective
-Psycho-social information, such as family support, caregiver limitations, financial constraints, living situation, independent living skills, and activation level
-Data recorded by patient for monitoring of progress toward patient goals
-Risk factors indicated by structured surveys (such as health risk assessments)

(Comments submitted by the Consumer Partnership for eHealth to the HIT Policy Committee in response to the Meaningful Use Stage 3 Request for Comment, dated January 14, 2013.) « less

(Q#2) At its heart, the use and integration of PGHD is fundamentally tied to the health care system’s view of patients as passive recipients of care, rather than essential partners with information and the ability to take actions that only they can. Focusing PGHD efforts on collecting data that is high-value for both providers and patients/families will help change this viewpoint. Once providers have experience with the benefits of PGHD, it is likely to continue.

We underscore the importance of patient identity-proofing and information authentication in the shift toward patient-generated information. ONC should prioritize dissemination of the newly adopted best practices for identity proofing and authentication for private and secure use of patient portals, developed by the Privacy and Security Tiger Team.

(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

(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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(Q#1) While the adoption of health IT is growing, there is significant risk that populations who lack Internet access will be left behind. To bridge this “digital divide,” the government should capitalize on partnerships with community organizations which have direct access to such populations. For example, consider the partnership between the New York Academy of Medicine Library, the New York Public Library, and Settlement Health in East Harlem, or the partnership between Yale University and Head Start parents in New Haven, Connecticut.

(Q#2) Many of the current training and education materials are not designed with consumers in mind and therefore are not easily digested by patients, families, and caregivers. Once meaningful consumer educational materials have been identified, the federal government could help direct these materials to health care navigators and health coaches. This could be accomplished by creating a singular, central repository and ramping up outreach efforts pointing communities towards the repository.

(Q#1) eHealth tools that improve consumer-provider communication, such as secure messaging through EHR patient portals, mobile apps, texting, gaming, and social networks, could greatly assist in the reduction of health disparities. Research indicates that some underserved populations with the greatest risks have the most difficulty communicating with their providers, mostly due to language barriers (regardless of interpreter services), leading to worse health outcomes. However, secure messaging has been shown to improve health outcomes, treatment adherence, and patient satisfaction. It is critical that these interfaces and tools should be displayed in languages other than English, accessible to those with visual and cognitive impairments, and use plain language, rather than medical jargon… more »

…whenever possible, with links to explanatory materials when not possible.
Additionally, the GPS functions of mobile devices should be leveraged to help people locate services such as HIV testing sites or free clinics in their communities.
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(Q#2) There are several examples of partnerships helping to bridge the digital divide. For example, Mt. Sinai Adolescent Health Center (MSAHC) used text messaging to engage their low income, adolescent patient population. Patients were encouraged to submit health-related questions via text message, and received health-related advice and medication reminders.

(Q#3) ONC should encourage the development of robust standards and continue to fund advanced research projects that leverage the standards of EHRs, such as the SMART platform, which is an open way that individual patients, physicians, small software vendors and others can design innovative health IT applications at a lower cost.

(Q#1) Care plans are necessary to provide a roadmap for achieving the best possible outcomes, as defined by both clinical and individual patient goals. 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. ONC can take steps to build the necessary foundation for interactive, flexible, accessible care plans. Care plans should include documentation of a cross-setting care team member list, comprehensive patient goals (not setting specific), and psycho-social assessment information, such as behavioral health needs, living situation, and community-based resources. When… more »

…more than one professional care team member is listed, a notation should be made regarding who serves as the primary contact so that the patient and family member are never without a clear point of contact. 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. « less

(Q#1) ONC should require the capability for EHRs to identify relevant clinical trial opportunities for individual patients as a way to introduce efficiencies for both providers and patients in terms of identifying potential trials for patient participation. Facilitating communication between health practitioners, the research community, and patients and their caregivers is critical to advancing cures and treatments, and ensuring patient access to them.
o If patients are providing health information directly to a researcher, it is essential that there are privacy and security protocols in place that govern the transmission of health information.

(Q#2) The Health Insurance Portability and Accountability Act (HIPAA) requires that providers provide patient access to their own health information. However, HIPAA is often mis-understood by providers. More provider education would be helpful, and making downloadable materials available online for patients who need them.


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