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March 1, 2014

Patrick Conway, M.D.

Deputy Administrator for Innovation and Quality

Center for Medicare and Medicaid Innovation

Centers for Medicare and Medicaid Services

Re: Request for Information: Evolution of ACO Initiatives at CMS

Dear Dr. Conway:

The Campaign for Better Care (CBC) appreciates the opportunity to comment on

the request for information on the evolution of Accountable Care Organization

(ACO) initiatives at CMS. The CBC is a broad-based coalition of consumer

organizations with a direct stake in improving the health and quality of life for

older adults with multiple health conditions and their family caregivers. We are

committed to ensuring that new models of care delivery and payment provide the

comprehensive, coordinated, patient- and family-centered care patients want and

need while helping to drive down costs.

We commend the work CMS is undertaking to move us toward more accountable

care. While the Pioneer and Shared Savings programs were an important first step,

we believe CMS now has the opportunity to promote new approaches that go beyond

payment initiatives to more fundamentally transform the way care is delivered.

We understand that CMS is considering a range of potential new risk arrangements

and structures, with the goals of attracting new participants and improving

efficiency and accountability. Our comments will respond directly to some of the

questions raised in the Request for Information, but will also present more

fundamental consumer policy priorities that must be central to any discussion about

the evolution of the ACO programs. Most importantly, as CMS considers the

evolution of ACOs, partnering with patients and their family caregivers – the end

users of care – at every level will be essential to designing a system that is truly

accountable for the right care at the right cost.

The CBC has a long-standing commitment to bringing a strong consumer voice to

the development and implementation of innovative models of care. Beginning in

2009, we convened a diverse panel of consumer organizations to develop patient-

and family-centered principles to guide the development and implementation of the

medical home model of care (attached). These principles provide an operational

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definition of what patient-centered care means to patients and families and identify

core elements in ensuring whole-person care, coordination and communication,

patient support and empowerment, and ready access. We believe that the most

successful ACOs will be grounded in comprehensive and well-coordinated primary

care – a true patient-centered medical home – and as CMS considers new ACO

approaches and designs, these core elements must be a driving force.

Implementing this vision effectively requires partnering with patients and families

at every level. This partnership goes beyond just an occasional focus group or an

annual patient experience survey – collaborative patient and family engagement is

a systematic and routine method for meaningfully involving patients and family

caregivers in decisions concerning their care, and at every level – in care design and

redesign, in governance, and at the community level.

The following recommendations aim to help CMS develop new ACO programs that

leverage these partnerships to achieve quality, comprehensive, patient- and family-

centered care. We believe the Comprehensive Primary Care (CPC) Initiative is an

excellent model to draw from.

Engaging Patients and Family Caregivers as Partners in Care

The success of an ACO will depend on the extent to which it engages patients and

their families as full partners in their own care and supports their participation in

decision-making. We urge CMS to ensure the next generation of ACOs support

these partnerships. Specifically:

Shared decision-making

Patients and their families value and benefit from decision-making tools that can

help them make good decisions about care together with their clinicians. Patients

and their families want guidance from their health care providers, but they also

want high-quality, complete, unbiased, up-to-date information that enables them to

assess all of their treatment options – including the option of watchful waiting, the

risks and benefits of the various options, and how the options align with their

personal values and preferences. They want to be prepared to discuss these matters

with clinicians and reach the decisions that are right for them. Shared decision-

making tools and processes can improve the quality of care with preference-

sensitive decisions when there is considerable uncertainty or good information with

equipoise among options. Shared decision-making may also play a role when there

are evidence-practice gaps and an informed patient might align with better

evidence contrary to practice patterns (e.g., practices identified in the Choosing

Wisely initiative). When available, high-quality decision tools should be used to

reduce unwarranted practice variation and better align care with the needs and

values of patients themselves.

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We commend CMS for supporting shared decision-making in both the Medicare

Shared Savings and Pioneer programs. As CMS considers new ACO

approaches, we urge the agency to include even more support for shared

decision-making tools and processes, through robust program

requirements and quality measures.

Collaborative self-management

Supporting patients (and family caregivers as appropriate) in managing their

health and chronic conditions is a key strategy not only for engaging patients as

partners in their care but also improving outcomes and reducing the need for more

costly medical care. We strongly encourage CMS to require support for

collaborative self-management in any new ACO approaches.

We define collaborative patient self-management as follows:

Patients are supported in building the skills, knowledge, and confidence they

need to manage their health and health care, maintain maximum function,

overcome barriers, and achieve personal goals;

Patient self-management is rooted in a collaborative partnership between the

patient, family caregiver as appropriate, and provider;

Patients are supported “where they are” in their capacity for self-

management and assisted in increasing that capacity;

Patient self-management activities are linked to a care plan, developed

together with the patient that reflects their wants and needs, is tailored to

their life situation, and has realistic achievable goals;

A support structure ensures patients and family caregivers have the

information they need and are continuously supported. This includes ready

access to their medical records, evidence-based information provided at the

appropriate health literacy level to support their care decisions, a “point

person” they can call with questions, a system for follow-up after hospital

discharge or other transitions of care, the option of peer support, and

connection with community-based resources.

ACOs should be encouraged to use evidence-based approaches when available to

engage patients in their care and support self-management. One such approach is

the Stanford Chronic Disease Self-Management Program, which is available across

the United States.

Care planning

Individualized care plans are a core element of effective care coordination, and we

continue to support an emphasis on care planning in ACO requirements. We

encourage CMS to think of them as shared care plans, which are jointly maintained

and updated by patients, family caregivers, and members of their care team.

Proactively and explicitly engaging an individual’s family and caregivers in the

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development of a care plan helps to ensure that the individual’s abilities, culture,

values, and faith are respected and care instructions and care recommendations are

more likely to be understood and followed.

In 2013, the National Partnership for Women & Families released a report detailing

consumer priorities for health and care planning. Consumers envision moving

beyond the concept of a care plan as a document fixed in time, to a

multidimensional, person-centered health and care planning process built on a

dynamic, electronic platform. This next generation of care plans in an electronic

environment connects individuals, their family and other personal caregivers, paid

caregivers (such as home health aides), and health care and social service providers,

as appropriate, and provides actionable information to identify and achieve the

individual’s health and wellness goals. We encourage CMS to draw upon the

Consumer Principles as a resource (see attached).

Shared care plans go far in helping ACOs meet CMS’s strategic objectives for the

program, as well as creating efficiencies for providers. In the next generation of

ACO initiatives, ACOs should be required to provide a patient-centered, bi-

directional platform for health and care planning. At a minimum, CMS

should specifically require ACOs to:

Record caregiver status and roles using DECAF standards (Direct

care provision, Emotional support, Care coordination, Advocacy, and

Financial) as appropriate;

Document both patient and provider goals; and

Electronically transmit care plans to patients and caregivers across

the care team.

These pieces of information build upon the summary of care record required for

demonstrating Meaningful Use of electronic health records, engage patients and

their family caregivers in the planning of care, and provide the necessary

foundation for a more patient- and family-centered, comprehensive, integrated plan

of care. Ideally, care plans should also enable patient access and ability to

contribute and correct health information (such as family health history, goals,

chosen support individuals and networks, and advance directive content) to help

manage their care and well-being.

Engaging Patients and Families in Care Design/Redesign

Patients and families have unique and valuable perspectives to share when it comes

to designing or redesigning care delivery. Only by including consumer voices at the

table can ACOs successfully design care in a way that truly meets the needs of

patients – particularly the most vulnerable patients – and is embraced by

consumers.

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We urge CMS to include strong requirements and accountability for

consumer involvement in ACOs’ care design and redesign efforts. Because

ACOs may vary widely in structure, there are many potential opportunities to

partner with patients and families in design or redesign. These could include:

Working with consumers patients and families to ensure an ACO’s care

coordination efforts are meeting patient/family needs;

Conferring with patients, families, and consumer leaders about cultural and

language barriers and strategies to meet the needs of diverse populations;

Routinely asking patients and families about experience of care and then

collaborating with patients, families and consumers to use the feedback to

design quality improvement interventions with consumer leaders; and

Working with patients, families, and consumer leaders to design patient

portals that give patients and families real-time access to their medical

records and other functionality they identify as valuable (online scheduling,

prescription refill requests, etc.).

Program requirements for any new ACO initiative should facilitate robust and

meaningful patient, family and consumer engagement in design/redesign.

Engaging Patients and Families in Governance

Consumers must have a real voice in ACO governance and decision-making. As

CMS considers the governance structures of new ACO approaches, the agency must

move beyond the requirements of the Medicare Shared Savings and Pioneer

programs to promote meaningful consumer engagement in ACO governance. We

define meaningful consumer engagement on governance boards and bodies to

include the following:

Proportionate representation (i.e., not having only one patient, family

caregiver, or consumer representative on an ACOs’ governance board);

Representatives reflect the population served by the ACO;

Representatives are “true” consumers:

o Primary interest is the needs and interests of consumers, patients, and

families;

o No direct financial stake in the health care system (for example, a

practitioner or plan representative); and

Representatives are meaningfully involved in decision-making (i.e.,

everyone—patients, families, consumers, and providers—have an equal seat

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at the table and an opportunity to share their perspectives as decisions are

made).

Partnering with Community-Based Organizations

Community-based organizations – like Area Agencies on Aging or Disability

Resource Centers – are often untapped resources that can help ACOs address gaps

and improve the delivery of care, particularly for the most vulnerable populations,

including Medicaid beneficiaries. The Shared Savings and Pioneer programs took

some important first steps to foster links between ACOs and community resources.

We urge the agency to build on this work and support greater

partnerships between ACOs and community groups, in order to:

Facilitate smoother transitions between care settings by connecting

patients – especially those who are most vulnerable – with services and

supports (such as respite care for families, Meals on Wheels, home-based

care, etc.) as they transition from the hospital or other care setting to their

homes;

Gain a better understanding of the populations served by the ACO.

Community-based organizations are generally located in the same

communities as the populations they serve, and therefore have a unique

understanding of the needs of the population, as well as a real stake in

finding solutions that meet the needs of the community;

Improve communication. With their connection to both the health care

system and beneficiaries, community-based organizations can serve as

neutral entities that help to inform and support an ACO’s communication

with its population;

Prevent duplication of services. In some cases, a lack of communication

between ACOs and community-based service providers may lead to

duplication of services. Better coordination will help the ACO to use

resources more efficiently to achieve quality care for beneficiaries.

Disseminate information. Community-based organizations often have the

ability to disseminate information to their constituents in a variety of ways,

and as a trusted source of information, can be helpful allies to ACOs seeking

to raise awareness about a particular condition or issue, or to promote and

event; and

Connect with reliable and relevant resources and materials.

Community-based organizations can be helpful partners to the ACO in

developing and reviewing materials and tools that are relevant and timely

for patients and their families before, during, or after a health care-related

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episode.

CMS has already undertaken some innovative steps to support better linkages

between health care providers and community-based organizations, specifically, the

University of Chicago’s Community Rx pilot. This project received a Health Care

Innovation grant to set up a real-time automated system to link patients with up-to-

date information about community-based services and resources. We encourage

CMS to evaluate the progress of this pilot in considering how to support

better connections among ACOs and community resources.

Additional Recommendations

Accountability for Medicaid Populations

We strongly support CMS’s interest in transforming care for Medicaid beneficiaries

by pursuing innovative care delivery approaches for this population. These

beneficiaries – who tend to have more complex health needs and often face greater

barriers to care – may have the most to gain from an integrated system that

provides more comprehensive, coordinated care. It is crucial, however, to ensure

that any new ACO model for Medicaid beneficiaries be truly accountable

for the care that this population will need, and hence CMS requirements

must maintain strong consumer protections and ensure ACOs have

adequate infrastructure to meet beneficiaries’ needs.

It is crucial that all ACOs aiming to serve Medicaid beneficiaries and dually

eligible beneficiaries be able to manage and coordinate the full spectrum of

dual eligibles’ needs, and include within their network providers with

expertise in managing this population’s unique needs;

CMS should encourage ACOs to provide intensive care management and

home-based primary care services, and include home health agencies,

assisted living, SNFs/NFs, and other providers of long term services and

supports in their networks to maximize coordination of care for dual eligibles;

and

CMS should strive to identify ways to ensure that ACOs meaningfully

partner with existing community-based service providers to coordinate and

deliver the community-based services that are especially critical for many

Medicaid beneficiaries.

We urge CMS to continue to work closely with consumer advocacy organizations as

it considers expanding innovative care for this population. These organizations can

help the agency ensure that program requirements provide the appropriate

protections for beneficiaries, and that information transmitted to beneficiaries

meets their needs and addresses common questions (for example, when

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beneficiaries are being notified of their provider’s participation in an ACO).

Consumer Protections

As CMS considers new ACO approaches, we urge the agency to ensure strong

consumer protections are not sacrificed in efforts to innovate and better integrate

care. These goals are not mutually exclusive. This is of particular concern for

Medicaid and dually eligible beneficiaries, but important for all individuals

receiving care through an ACO. These protections include the following:

Non-Interruption of Care – CMS should ensure that beneficiary alignment

or affiliation with an ACO does not create interruptions in ongoing care that

cause significant hardships for beneficiaries or result in a reduction of

needed services;

Transparency and Notification – Regardless of how a new ACO is

organized, we believe there must be full transparency of beneficiary

alignment/affiliation. Beneficiaries have a right to know about any new

financial incentives that may influence provider behavior and the care that

is delivered. Beneficiaries also need to fully understand what they can expect

from the ACO, including attributes that differentiate it from the fee-for-

service model, like care coordination;

Notice – CMS should ensure ACOs include adequate notice protections for

beneficiaries that are consistent with existing requirements – specifically,

notice of the availability of treatment options, the right to a second opinion,

etc.; and

Grievance/Complaints Processes – For any potential new approach, we

believe ACOs must have in place a formal procedure for patients to voice

grievances regarding treatment or care (such as the regulatory language for

both Medicare Part D and Medicare Advantage). CMS should require ACOs

to give notice to patients of their rights to file a complaint under the

grievance procedures. CMS should also require ACOs to establish a process

to track and maintain records on all grievances received and the disposition

of each grievance. ACOs should report this information to CMS on a regular

basis, and CMS should have a process in place to issue warnings, put an

ACO on a corrective action plan, or terminate an ACO’s participation.

Quality Measurement

In any new ACO approaches, we urge CMS to ensure a robust focus on quality

measurement and improvement, with the goals of improving the quality of care for

patients and families, and supporting their ability to make informed health care

decisions according to their values and preferences.

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Specifically, we urge CMS to:

Make available quality information that is meaningful, understandable, and

accessible to those receiving care;

Improve the availability of meaningful measures to support informed

decision-making by patients and families, and drive toward a patient-

centered delivery system that includes improved clinical outcomes; and

Stratify and report clinical quality measures by disparity variables such as

race, ethnicity, language, socioeconomic data, disability status, sexual

orientation, and gender identity data.

We strongly urge CMS to prioritize the collection of patient experience and patient-

reported outcomes measures. Measuring patient experience is often the only way to

evaluate elements of care that patients and family caregivers identify as most

important to improving their health outcomes. Gauging a patient’s experience of

care is especially important for those who have multiple conditions and for whom

condition-specific quality measures cannot provide an adequate picture of the total

quality of care received. Family caregiver experience data is also particularly

helpful in assessing experience of care for those patients with cognitive impairment

that prevent them from talking about their own experience, or provide insights into

areas patients themselves may be reticent to discuss.

Communicating with Beneficiaries

Effective communication with beneficiaries regarding ACOs and other new delivery

models is vitally important to the success of these programs. For example, a letter

notifying a beneficiary that they have been attributed to an ACO may include

accurate information – but if it is filled with jargon and comes from an unknown

source, it is likely to cause confusion and concern.

We urge CMS to think deliberately about communication with beneficiaries

regarding any potential new ACO models, and collaborate with consumer

organizations and literacy experts as it considers how best to communicate with

beneficiaries. We recommend the following best practices:

Notification/Communications from Trusted Sources – Beneficiaries

may not understand what an ACO is. But a letter from the beneficiary’s

doctor explaining how the doctor is now associated with a particular ACO,

explaining what the entity is, and how it will enable the doctor to deliver

better care will more positively resonate with beneficiaries;

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Use Simple and Appropriate Language – Communications must be clear,

use simple language (no jargon), and be linguistically and culturally

appropriate. (More detailed recommendations regarding cultural and

linguistic appropriateness may be found later in these comments);

Explain Beneficiary Impact – Beneficiaries will want to know how a new

program will impact them – for example, whether it will affect their out-of-

pocket costs, access to treatments, and advantages (e.g., better coordination

of care);

Avoid Trying to Do Too Many Things in One Letter – A notification

letter should serve a single purpose – to introduce a new proposal or explain

a new change to Medicare beneficiaries. Including too many competing issues

in a notification letter can be confusing; and

Provide a Toll-Free Number for Beneficiaries with Questions –

Regardless of how well-written the notification letter is, many beneficiaries

will still have questions. Provide a toll-free number and a service

representative equipped to answer questions.

Health Information Technology and Meaningful Use

Health IT is an essential foundation for delivery system and payment reforms.

ACOs and other new models of care require the ability not just to share data, but to

integrate it across various sources (i.e., doctors, hospitals, laboratories, pharmacies,

registries, and patients) and across various types of data (i.e., clinical, claims, and

patient-generated data). Health information exchange is fundamental to achieving

the improved quality, care coordination, patient-centeredness, and cost reduction

goals of ACOs.

The “Meaningful Use” Electronic Health Record (EHR) Incentive Program, and the

technical standards deployed through the parallel ONC Certification program, are

accelerating the development of necessary standards and services to make care

coordination across health systems easy and efficient for both providers and

patients. For example, Meaningful Use is producing standardized data elements for

critical records and processes of care that are foundational to successful ACO

arrangements, including:

Summary of Care Record – The eligible hospital or professional that

transitions a patient to another setting of care or refers the patient to

another provider of care provides a summary care record for 50 percent of

transitions of care or referrals;

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After Visit Summary – Clinical summaries are provided for patients

following each office visit;

View, Download, Transmit (V/D/T) – Patients have the ability to view

online, download, and transmit to third parties their health information,

and the criterion specifies the types of information that must be made

available;

Population Health Dashboard – Near real-time (vs. retrospective

reporting) patient-oriented dashboards displaying lists of patients with

specific conditions or filtering by various demographic or clinical variables

for use for quality improvement, reduction of disparities, research, or

outreach reports;

Health Care Event Notification – Electronic notification of a significant

healthcare event (arrival at an Emergency Department, admission to a

hospital, discharge from an ED or hospital, or death), in a timely manner

to key members of the patient’s care team, such as the primary care

provider, referring provider or care coordinator, with the patient’s consent

if required; and

Patient Reminders – Use of clinically relevant information to identify

patients who should receive reminders for preventive/follow-up care;

reminders sent to these patients per patient preference.

We were disappointed when the requirement for half of eligible primary care

providers to be meaningful users was replaced with a less meaningful quality

measure in the final rulemaking for the Medicare Shared Savings Program. With

the next generation of ACO initiatives, we encourage CMS to return to a

targeted requirement for ACOs to demonstrate a majority of its providers

are meaningful EHR users.

The arc of EHR adoption exceeds what anyone anticipated five years ago when the

HITECH Act was passed; Meaningful Use has been more successful than many

stakeholders anticipated. As of December 2013, nearly 90 percent of eligible

hospitals had received an incentive payment and approximately 60 percent of

eligible physicians were successful meaningful users.1 This infrastructure for health

information exchange should be leveraged in the current and future ACO

initiatives, as well as other innovative new payment and delivery models. Given

the success of the Meaningful Use program, we strongly urge CMS to

require that at least 50 percent of eligible primary care providers and 75

1 Registration and Payment data. HIT Policy Committee meeting, February 4, 2014.

http://www.healthit.gov/facas/sites/faca/files/HITPC_Feb2014_HITPC.pdf

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percent of eligible hospitals be meaningful users of HIT as a core

requirement for becoming an ACO.

To improve both care quality and health outcomes, it is absolutely critical that

health IT systems facilitate the safe and secure sharing of information, not just

between providers, but among patients, families, and other designated caregivers.

Giving patients 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. Giving patients the tools to access and manage their own health

information electronically is foundational to patient engagement and high quality

care. Our comprehensive national survey, conducted by Harris Interactive in 2012,

found that patients value this functionality and that it increases trust by adding

transparency to the health care system.2 At a minimum, ACOs should have

standards and processes in place for beneficiaries to electronically access

their health information in a way that is aligned with the

“View/Download/Transmit” criteria in Meaningful Use (at least among

providers that are eligible for Meaningful Use). Consistent with Stage 2 Meaningful

Use, ACOs should be accountable for having at least 5 percent of their patients

accessing their health information online.

Furthermore, given the success of the Meaningful Use program, and the role that

ACOs should be playing as leaders in coordinating care, ACOs should be held to a

higher standard and must lead the way in fostering health information

exchange. ACOs should be required to share care summaries electronically at a

greater threshold than is currently required in the Meaningful Use program.

ACOs should facilitate the provision of electronic communication infrastructure,

such as by making the Direct standards and services available to all their

participating providers. ACO participants should use the Direct standard, or a

compatible service or capability, to transmit Summary of Care records and,

eventually, care plans. Stage 2 of Meaningful Use requires a Summary of Care

record to be provided for 50 percent of transitions and referrals, and to provide the

record electronically for more than 10 percent of transitions and referrals. Stage 2

will facilitate more robust health information exchange, and ACOs should lead the

way.

Cultural and Linguistic Appropriateness

To facilitate and enhance patient and family caregiver engagement in care, all

patient-facing information and communication platforms should be displayed in

plain language (rather than medical jargon), in patients’ preferred languages, with

links to explanatory, contextual information as needed, and accessible to those with

visual, hearing, cognitive, and communication impairments. Using culturally and

2 “Making IT Meaningful: How Consumers Value and Trust Health IT.” www.nationalpartnership.org/hit.

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linguistically appropriate information and platforms to tailor information to the

unique needs of patients and their caregivers could significantly improve health

equity for patients experiencing health disparities, and is also directly aligned with

the mission of the National Standards for Culturally and Linguistically Appropriate

Services (CLAS) in Health and Health Care. The Meaningful Use program—in

current criteria for Stage 2 and proposed criteria for Stage 3—has already been

developing functionalities to accomplish this critical objective.

Conclusion

We appreciate the opportunity to share consumer perspectives with CMS as you

consider the evolution of ACO programs. We look forward to working with you to

ensure that ACOs – and all new care models – are designed in ways that truly

transforms the way care is delivered to all patients.

Sincerely,

American Association on Health and Disability

American Hospice Foundation

California Pan-Ethnic Health Network

Caregiver Action Network

Caring From A Distance

Community Catalyst

Families USA

Family Caregiver Alliance

Mothers Against Medical Error

National Alliance for Caregiving

National Council on Aging

National Health Law Program

National Partnership for Women & Families

National Women’s Health Network

The American Heart Association

The Empowered Patient Coalition

The Well Spouse™ Association