[DATE] Dr. Patrick Conway Deputy Administrator for Innovation & Quality, CMS Chief Medical Officer Centers for Medicare and Medicaid Services U.S. Department of Health and Human Services Hubert H. Humphrey Building, Room 445-G 200 Independence Avenue, SW Washington, DC 20201 RE: Next Generation Accountable Care Organization (ACO) Model Request for Applications Dear Deputy Administrator Conway: The Coalition for Better Care (CBC) appreciates the opportunity to comment on the Next Generation Accountable Care Organization (ACO) Model Request for Applications (RFA). The CBC is a broad-based coalition of consumer organizations with a direct stake in improving the health and quality of life of patients 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 the Centers for Medicare and Medicaid Services (CMS) is undertaking to move us toward more accountable care. With the Next Generation Model, CMS has an additional opportunity to promote approaches to payment reform that fundamentally transform the way care is delivered. Next Generation ACOs should deliver high quality, high value care that treats the patient as a whole person and ensures coordination of care, improved communication, patient support and empowerment, and ready access to health care providers, services and community-based resources and supports. We believe that the most successful ACOs will be grounded in comprehensive and well-coordinated primary care a truly patient-centered medical home. As CMS evaluates Next Generation ACO applicants and considers future evolution of the program, these core elements must be a driving force. Indeed, the success of Next Generation ACOs will rest on their ability to deliver on all elements of the Triple Aim, including patient experience of care. Ensuring delivery of care that meets the needs of patients and families requires partnering with patients and families at every level. Such partnership must encompass meaningful systemic collaboration with patient and family caregivers at the point of care, in designing new models of care delivery, in policy and governance, and at the community level. Additionally, ACOs must be built upon a strong foundation of robust consumer protections that ensure beneficiary rights are safeguarded and that access to care is not impeded. Holding Next Generation ACOs accountable for improved patient health and experience of care will require quality measures that are focused on outcomes and patient-reported data. Stratified data collection and reporting must be a critical component of measuring success and improving how ACOs deliver care.
The following comments respond to specific items in the RFA and set out fundamental consumer priorities that must be central to the Next Generation ACOs. COMMENTS ON SPECIFIC PROVISIONS V. Applicant Eligibility and Participation Requirements: C. LEGAL ENTITY, GOVERNANCE STRUCTURE, AND LEADERSHIP We strongly support the required inclusion of beneficiary and consumer advocates in Next Generation ACO governance bodies and applaud CMS for defining who and who does not qualify as a consumer advocate or beneficiary. However, we urge CMS to strengthen these requirements to ensure meaningful involvement of consumer advocate and beneficiary representatives. We define meaningful involvement as follows: Proportionate representation. Proportionate representation requires having more than one patient, family caregiver, or consumer representative on an ACO s governance board. Requirements to include consumer advocates and beneficiaries on governance boards or entities should mandate that these be separate representatives. The Next Generation ACO program allows for the consumer advocate representative and the beneficiary representative to be the same person. Consumer advocates and beneficiaries each bring unique and valuable perspectives to the table; their voices should not be embodied in only one representative. Further, having multiple consumer advocate and beneficiary representatives on a governance board will ensure more sufficient representation of the ACO s beneficiary stakeholders. Finally, ACOs should ensure consumer advocate and beneficiary representation on the governance board reflects the diverse patient population it serves. Representatives are meaningfully involved in decision-making. All representatives on the governance entity (including consumer advocate and beneficiary representatives) must have an equal seat at the table and an opportunity to share their perspectives as decisions are made. In addition, consumer advocate and beneficiary representatives should be considered part of a feedback loop in which their input/ideas are carried up to the leadership of the ACO. Appropriate follow up should be then demonstrated to the governance entity to ensure accountability. Representatives receive orientation and onboarding support to facilitate their successful participation. Please see the section on Enhanced Support and Oversight, below, for additional detail. Alternative Approaches to Engagement Understanding the legal constraints some ACOs face in states with Corporate Practice of Medicine Laws, we support requiring Next Generation ACOs to provide details of alternative approaches to engagement and requiring CMS approval of these approaches. We urge CMS to 2
review the proposed alternatives carefully to ensure they meaningfully engage consumers and beneficiaries. It is especially critical that ACOs implementing alternative approaches to engaging beneficiaries and consumers at the governance level ensure a strong process for regular communication between these alternative entities (such as a Patient and Family Advisory Council) and the governing body. Otherwise, there is risk that consumer and beneficiary voices will be marginalized. Enhanced Support and Oversight Health care entities, including ACOs, have expressed difficulty with meaningfully engaging consumer advocate and beneficiary representatives on governance bodies. Successful partnerships with consumer advocate and beneficiary representatives on ACO governing boards, Patient and Family Advisory Councils (PFACs), quality and safety improvement bodies, and other entities require a greater level of ACO support and onboarding resources that may in turn require guidance and oversight from CMS. An important yet often overlooked first step is providing orientation and onboarding support for consumer advocate and beneficiary representatives. Successful orientation and onboarding strategies help to ensure that consumer advocate and patient representatives are effective in their governance roles and ultimately help the ACO meet its quality, patient experience, and affordability goals. Next Generation ACOs should describe in their applications an orientation and onboarding process for consumer advocate and beneficiary representatives on governance boards, other internal multi-stakeholder entities, and PFACs. CMS should monitor ACO adherence to these processes in evaluation and oversight processes. We encourage CMS to offer guidance and assistance to ACOs with respect to developing onboarding and orientation processes. For example, successful orientation and on-boarding processes include: Reaching out to governance board representatives and/or PFAC members individually to detail the purpose and goals of the board/group, roles and responsibilities, time commitment involved, and why the board representative/pfac member will play a vital role. Providing clear, concise, and targeted materials in advance, including a welcome packet with agendas, background materials, mission/vision/goals statements, a compact or bylaws, and contact information for a key ACO staff member (to whom consumer advocate/beneficiary board representatives or PFAC members may reach out with questions or concerns). Identifying a mechanism for consumer advocate/beneficiary board representatives or PFAC members to provide ACO staff with ongoing thoughts and recommendations about their involvement, as well as a plan for how staff will use that information to make improvements. 3
Committing to checking-in regularly with consumer advocate and beneficiary board representatives and PFAC members to ensure their needs are being met and they feel supported in their role and work in partnership to make adjustments as needed. Orientation and onboarding processes should take into account the needs of the consumer advocate and beneficiary representatives and be provided in a way that is useful in supporting their meaningful participation. In addition to implementing an orientation/onboarding process for consumer advocate and beneficiary board representatives and PFAC members, it is also essential to ensure adequate support for ACOs and other stakeholders to help them effectively integrate consumer advocates and patients and families into the work of the board or alternative entity. We urge CMS to work with ACOs in the application phase to determine how the ACO will: Communicate the important role consumer advocate and beneficiary representatives play in governance and decision making; Create an expectation that consumer advocate and beneficiary input will be valued and respected; and Provide training and resources to support effective collaboration with consumer advocate and beneficiary representatives. It is also important for ACOs to monitor and assess continuously the degree to which consumer advocate and beneficiary representatives are being meaningfully engaged and whether changes being made through the ACO are actually improving patient care experiences. This information must be part of CMS s evaluation of Next Generation ACOs; we encourage CMS to work with ACOs to determine the most appropriate ways to track and share this information. D. PREFERRED PROVIDERS If Next Generation ACOs are permitted to partner with non-aco-participating Preferred Providers or Skilled Nursing Facility (SNF) Affiliates as part of efforts to coordinate beneficiary care, robust quality criteria and consumer protections must be in place to ensure that preferred entities meet the highest standards for care and that beneficiary access rights are not diminished. Next Generation ACO beneficiaries must have ready access to transparent, consumer-friendly quality performance data and ratings for Preferred Providers and SNF Affiliates. As is required of SNF Affiliates, Preferred Providers should likewise be required to demonstrate a minimum quality rating level or score. Additionally, we urge CMS to provide more direction on how Preferred Provider and SNF Affiliate referrals will be implemented and how CMS will ensure that beneficiaries are able to access and compare quality data for Preferred Providers and SNF Affiliates. To support beneficiary access to providers quality data, we urge CMS to require referring Next 4
Generation ACO providers to provide beneficiaries with the quality data/ratings of Preferred Providers and SNF Affiliates and to inform beneficiaries about how to access and evaluate provider quality data/ratings. Next Generation ACOs providers must also be required to disclose their financial relationships with Preferred Providers and SNF Affiliates to beneficiaries. Moreover, referring Next Generation ACO providers must be required to inform beneficiaries of the full range of providers available to them, beyond the recommended Preferred Provider or SNF Affiliate. Next Generation ACOs must respect beneficiary choice with regards to choice of provider. Additionally, we suggest that ACOs work with beneficiaries and families to develop Preferred Provider and SNF Affiliate lists based on factors that go beyond quality scores and cost to include additional factors that are important to patients and families, such as communication skills, cultural and linguistic appropriateness, and ADA accessibility, amongst other areas. Partnering with patients and families in this way will help to achieve the goals of developing more streamlined relationships with high quality providers that provide the kind of care desired by both the ACO and by patients and families. Related to this, CMS should require Next Generation ACOs to make clear how they will ensure care received from Preferred Providers and SNF Affiliates is integrated with community resources, including communitybased organizations and non-clinical social supports. Finally, CMS must ensure that Next Generation ACO s Preferred Providers and SNF Affiliates do not discriminate or limit patient choice. Given CMS intent to administer financial rewards to beneficiaries who receive the majority of their care from Next Generation ACO providers and/or affiliated Preferred Providers and SNF Affiliates, the ability of the ACO s Preferred Provider and SNF Affiliate network to deliver comprehensive care that respects beneficiary choice with regards to care options is particularly critical. For example, if all of an ACO s participating providers, Preferred Providers, and SNF Affiliates were to be religiously affiliated, patient choice concerning sensitive health care services could be impacted. For instance, patient directives regarding end-of-life care may not be respected. We ask CMS to provide more information about how it will monitor ACOs and their Preferred Provider/SNF Affiliate networks to ensure that beneficiary access to care is not limited and that beneficiary choice is respected. VI. Model Design Elements: A. FINANCIAL BENCHMARK, PAYMENT MECHANISMS, AND SHARED SAVINGS; RISK ARRANGEMENTS. Next Generation ACOs provide an opportunity for ACOs to assume increased risk and responsibility beyond that available under Fee-For-Service Medicare, the Medicare Shared Savings Program or Pioneer ACOs. We are concerned that the move towards greater risk in ACOs has been faster than the evolution of consumer protections. As CMS continues to develop new models of care and payment and providers take on increased risk, reward, and responsibility, it is important that CMS ensuring that the evolution and application of 5
consumer protections are keeping pace. We therefore urge CMS to clarify how consumer protections will be enhanced as the level of risk that ACOs may assume increases. One element of strong consumer protections may be heightened quality reporting requirements, but quality measurement alone is insufficient. CMS should prioritize improvement of a broad array of consumer protections, including more complete notice requirements, greater emphasis on consumer outreach and education, and adequate protections concerning alignment, attribution, and data sharing. Increased levels of risk for losses coupled with influence over utilization management make it possible that some ACOs will stint on care. While quality criteria and quality measurement will help control this, the limitless combinations of potential stinting are unlikely to be adequately covered by a finite set of measures. CMS must monitor and ensure that patients get the care they need and that ongoing care is not interrupted. Finally, we urge CMS to develop a process that provides consumers with access to transparent information on the financial structure of ACOs and participating providers, as well as information on any use of utilization management. For example, providers who stand to share in ACO savings should be required to provide patients with a description of all possible treatment options and the provider s basis for deciding on the recommended treatment. Patients who are concerned about the provider s decision should have access to a process to seek a second opinion, within or outside of the ACO, which does not cause them to incur additional cost sharing. Finally, the ACO appeals process should be robust and designed to address the unusual context of an ACO where the patient s treating physician may have a direct financial relationship with the ACO and its participating providers. B. BENEFICIARY ELIGIBILITY AND ALIGNMENT TO NEXT GENERATION ACOS We support enhanced beneficiary choice with respect to their alignment with an ACO. Successful voluntary alignment, however, will require a robust, coordinated beneficiary education and outreach effort. We urge CMS to implement the following: CMS should directly communicate basic information about ACOs with all Medicare beneficiaries. CMS must be a trusted source for information about programs it sponsors. Consequently, CMS must also have a strong infrastructure in place to address beneficiary questions and concerns, including well-trained State Health Insurance Assistance Programs (SHIPS). CMS should encourage ACOs to work collaboratively with community-based organizations (CBOs), including those that represent communities of color and/or non-english speaking beneficiaries, around education and outreach. Beneficiaries are more likely to trust CBOs and local community groups, which will in turn create more buy-in from beneficiary perspective to join/stay in the ACO. ACOs should provide detailed information about their participating providers and how care will be better coordinated within their integrated systems. Information should be 6
provided in ways that are accessible and understandable by beneficiaries, including in different languages as needed based on the beneficiary population. ACOs are best equipped to provide more specific information about how care will be better coordinated in their specific integrated systems. CMS and ACOs should clearly describe the process for opting-out of alignment with a provider; this process should be clearly delineated from separate opt-out procedures for data sharing. CMS should issue additional guidance on what types of educational materials ACOs and providers will be permitted to give to beneficiaries. CMS also should provide clear guidance on the role it will play in reviewing ACO and provider-developed materials sent to beneficiaries, to ensure the materials are neither misleading nor coercive. CMS should be transparent about provider incentives in Next Generation ACOs, and clearly communicate beneficiary rights and consumer protections, including a clear explanation that alignment does not change a beneficiary s rights, such as freedom of choice of Medicare provider, ability to seek a second opinion or file a complaint, amongst other rights. CMS must also ensure maintenance and enforcement of necessary and appropriate consumer protections, particularly with respect to direct outreach and communication with Medicare beneficiaries. This includes protections against risk avoidance and gaming. Ultimately, all individuals eligible to be aligned to an ACO should be educated on what an ACO is, the benefits of alignment, and responsibilities and rights (including the right to continue to see any Medicare provider) that accompany alignment with an ACO. To help ensure that this information is effectively shared and communicated, written materials should include taglines in at least 18 languages and large print that inform patients of written translation services in all prevalent (500 or 5 percent of potentially aligned individuals) languages, as well as oral assistance for all beneficiaries with limited English proficiency. 1 As CMS works to develop outreach and education materials for beneficiaries, we would be happy to serve as a resource to provide guidance and feedback. Finally, as the Next Generation ACO Model and other ACO programs evolve, we encourage CMS to consider restructuring the alignment process to allow for opting-out of alignment with a provider, in addition to opting-in. The optimal model for voluntary alignment offers beneficiaries a complete set of choices: (1) affirmatively align with a provider, (2) do nothing (which would result in passive alignment), or (3) affirmatively elect to opt-out of alignment with a provider. 1 These specific recommendations come from a variety of established practices to increase language access. The Social Security Administration provides its materials in 18 languages (for more details see: http://ssa.gov/multilanguage/). The U.S. Justice Department has a safe harbor provision for HHS recipients in meeting written translation requirements by providing written translations for each language group that represents 5 percent or 1,000 people, whichever is less, of eligible individuals (for more details see: http://www.justice.gov/crt/about/cor/lep/hhsrevisedlepguidance.pdf). Additionally, the Department of Labor requires that certain plans covered under ERISA provide summary plan descriptions in languages, where the lesser of 500 people or 10% of plan participants speak the same non-english language (for more details see: 29 CFR 2520.102-2(c)(2)). 7
C. BENEFIT ENHANCEMENTS Beneficiary Coordinated Care Reward Meaningfully engaging beneficiaries as partners in care and delivering patient-centered care that meets the needs of patients and families is the best way to encourage beneficiaries to stay within the ACO when seeking care. Building a care delivery model that patients and families want to use is more likely to result in strong beneficiary alignment than are financial inducements or rewards. Any use of financial incentives must be limited to and focused on removing barriers to care, building strong relationships between providers and beneficiaries, and engaging patients in their care. Waiving or reducing copays for office visits to ACO providers or for medications related to chronic care management may have potential to improve beneficiary access to care by removing financial barriers. We do not believe, however, that the currently proposed semiannual monetary reward will achieve our shared goals of strengthened relationships between patients and their providers and enhanced patient engagement in their health and health care. Furthermore, Medicare beneficiaries are particularly vulnerable to fraud and millions of dollars have been spent educating beneficiaries about potential scams. As currently proposed, the financial rewards described in the RFA may contribute to perceptions of fraud. We are concerned that a beneficiary who is eligible for and receives the reward at a time well removed from when care was accessed may be confused and believe it to be a scam. Relatedly, a fraudulent actor could use the reward as an opportunity to scam beneficiaries. For example, fraudulent actors could seek to elicit bank account information from beneficiaries, suggesting that by providing the account information, beneficiaries could have the reward directly deposited into their bank accounts. Finally, the reward, if received, would be subject to both state and federal income taxes, creating another opportunity for fraud. Millions of older Americans do not pay federal or state income taxes because their income does not exceed the taxable threshold. We are concerned that such individuals could receive a notice from the Internal Revenue Service telling them they must include the reward in their income tax filings, even though they may not need to file taxes because of their low incomes. This could create much confusion, and potentially cause beneficiaries to incur unnecessary costs if they were to pay for a tax preparer to look into the issue only to find out that they do not owe taxes. We strongly urge CMS instead to offer financial incentives that remove barriers to care, such as waived or reduced copays or deductibles. If CMS allows for monetary rewards as described in the current Next Generation Model, we strongly recommend that CMS develop targeted anti-fraud outreach not only to those individuals eligible to receive the reward, but also to the general Medicare population. 8
Waiver of the Three-Day Inpatient Stay Requirement for SNF Services Next Generation ACOs may be permitted to waive the three-day inpatient stay requirement prior to admission to a skilled nursing facility or acute care hospital or critical access hospital. We urge CMS to make clear that when this rule is waived, beneficiaries must have access to and the ability to compare quality data/ratings of participating SNFs and SNF Affiliates. As noted above, CMS should require ACOs to disclose their financial relationships with participating SNFs and SNF Affiliates, inform beneficiaries of the full scope of providers available to them, and respect beneficiary choice. CMS must make clear that the agency will monitor SNF Affiliates to ensure that they continuously maintain a quality rating of no fewer than three stars. Additionally, we urge CMS to articulate how it will inform beneficiaries about who and who is not eligible to take advantage of this waiver. We urge CMS to require Next Generation ACOs to do the same. We also seek clarification as to the methods used by an ACO to distinguish between individuals who qualify for SNF care solely because of the waivers (and thus may be limited with respect to which providers they can see) and individuals who qualify for SNF care after meeting the general Medicare three-day inpatient stay requirement for SNF care (and can see any Medicare provider). We further urge CMS to clarify its procedures for when a SNF Affiliate to which a beneficiary has been referred is unable to accept the patient. CMS should clarify, for example, whether an ACO beneficiary is still subject to the three-day SNF rule if no participating SNF or SNF Affiliate is able to take him/her. Would the rule still be waived and the beneficiary permitted to obtain care at a non-participating, non-affiliated SNF provider? VII. Quality and Performance A. QUALITY MEASURES Quality performance scores will partly determine the financial savings opportunity for Next Generation ACOs through the benchmark calculation. The Next Generation Model adopts the MSSP quality measure set, except for the electronic health record (EHR) Meaningful Use measure (ACO 11: Percent of PCPs Who Successfully Meet Meaningful Use Requirements), for a total of 32 measures. We are disappointed CMS has dropped the EHR Meaningful Use quality measure, as Meaningful Use is accelerating the development of necessary standards and services to make care coordination across health systems, including ACOs, easy and efficient for both providers and patients. Additionally, requiring providers to report on the Meaningful Use quality measure will give patients more information about whether their doctors are Meaningful Users, and thus whether they, as patients, have electronic access to their own health information, the ability to securely email their providers, and are able to utilize other patient and family-facing functionalities of the Meaningful Use Program. In future measure sets, CMS should prioritize inclusion of cross-cutting patient reported outcomes measures and patient experience measures. Specifically, Next Generation ACOs 9
should use high impact quality measures that drive quality improvement and value, including patient-reported outcome measures (PROMs) and patient-experience measures and data that are meaningful to both consumers and providers. Maximization of the potential for PROMs and patient experience measures to improve care delivery and health outcomes likely requires evolving our electronic health information infrastructure such that it supports collection and use of PROMs and other high-value measures. We support interoperability so that data can be transmitted between providers in real time and integrated into their work flow and care delivery. Improved data collection and transmittal also will help address and reduce health disparities. According to the National Healthcare Disparities Report, despite clear progress nationwide in improving the health care delivery system to achieve the Triple Aim of better care, smarter spending, and healthier people, disparities in quality of care and outcomes by income and race and ethnicity remain significant and persistent. 2 To achieve more equitable health care outcomes, it is crucial that Next Generation ACOs incorporate disparity reduction goals into overall quality improvement goals and adopt tools that support measuring disparities and undertaking interventions. To help reduce health disparities, we urge CMS to require that Next Generation ACOs adopt CMS 2011 standardized data collection for capturing race, ethnicity, gender identity, sexual orientation and preferred language in individual person-level surveys. 3 Quality measure reporting should be stratified by demographic data at the provider level, as well as at the ACO level. Stratifying measures by demographic data is an important tool for uncovering disparities and quality gaps as well as identifying intervention points and strategies. Additionally, CMS should require Next Generation ACOs to use the new consensus metrics, developed by the National Quality Forum (NQF), to assess cultural competency and language services. Implementing these measures is critical to address provider biases, poor patientprovider communication, and poor health literacy. Collection and reporting of data on these measures also will help create a long term agenda for improving healthcare quality for vulnerable populations and others adversely affected by disparities. 4 Finally, we strongly recommend that Next Generation ACOs be required to report quality and cost information at the provider level, as well as at the ACO level. Providing beneficiaries with transparent information on cost and quality performance at the individual provider level as well as the ACO level will help consumers to make informed decisions with respect to choice of provider and care setting. Research has shown that much of the variation in quality and cost occurs at the individual provider level, not the practice site, group, or health system level. Providing this cost and quality information more transparent may also help beneficiaries to understand the potential benefits that an ACO can provide (specifically, higher quality care). Additionally, as mentioned above, quality data and ratings for Preferred Providers and SNF Affiliates must also be made readily available to Next Generation ACO beneficiaries. We 2 Agency for Health Research and Quality, U.S. Department of Health and Human Services. (2015, April). 2014 National Healthcare Quality and Disparities Report. Retrieved 7 May 2015, from http://www.ahrq.gov/research/findings/nhqrdr/nhqdr14/2014nhqdr.pdf. 3 Office of Minority Health, U.S. Department of Health and Human Services. (2015, February). Data Collection Standards for Race, Ethnicity, Primary Language, Sex, and Disability Status. Retrieved 7 May 2015 from http://minorityhealth.hhs.gov/omh/browse.aspx?lvl=2&lvlid=23. 4 National Quality Forum. (2012, August). Healthcare Disparities and Cultural Competency Consensus Standards. Retrieved 7 May 2015, from http://www.qualityforum.org/projects/healthcare_disparities_and_cultural_competency.aspx. 10
recommend that Next Generation ACO provide information for Preferred Providers and SNF Affiliates on their websites, along with quality data for the ACO and its participating providers. IX. Data Sharing and Reports A. DATA SHARING We do not support the RFA s instruction that Next Generation ACOs are not required to notify newly aligned beneficiaries of the ACO s intent to request their claims data from CMS or to provide information or forms regarding the opportunity to decline data sharing. We fully understand that, in order to provide highest possible quality care, the providers in an ACO need the fullest possible information about patients. We recognize it is therefore challenging for CMS to balance the sometimes-conflicting priorities of consumer privacy and quality care. Nonetheless, we believe that CMS must err on the side of consumer privacy and that beneficiaries should be notified about data sharing and their ability to opt-out. For the current Next Generation Model, we strongly urge CMS to: Require notice of data sharing and the ability to opt-out of data sharing. CMS should require ACOs to work with beneficiaries and consumers to ensure language clearly describes why and how their health information will be stored, exchanged, used and protected, the opportunity to opt-out, and other beneficiary rights. At minimum, the Next Generation ACO program should not diverge from the data-sharing notification and optout standards set forth in the December 2014 proposed rule for the Medicare Shared Savings Program. Permit communication between beneficiaries and their doctors (or practice staff) about ACOs and data sharing. It is important that patients be able to talk with someone in person, especially trusted professional staff in their doctor's office. Ensure that communications to beneficiaries make it clear that opting-out of data sharing is separate from opting-out of alignment with a provider who is participating in an ACO. Utilize community resources such as the State Health Insurance Assistance Programs (SHIPS) and Aging and Disability Resource Centers (ADRCs) to help beneficiaries understand their options regarding data. SHIPS and ADRCs must be trained and prepared to answer questions about ACOs and data sharing in order to be a meaningful resource. Overall, changes to data-sharing requirements cannot precede improvements to an up-front voluntary alignment process. As noted above, we strongly encourage CMS to consider a voluntary alignment process that offers beneficiaries a complete set of choices: (1) affirmatively align with a provider, (2) do nothing (resulting in passive alignment), or (3) affirmatively elect to opt-out of alignment with a provider. A strong up-front notice that educates beneficiaries about what an ACO is and the role that data-sharing plays in facilitating care coordination will in turn support more informed beneficiary decision-making 11
with respect to data-sharing. Once such a model is put in place, it is conceivable that a consumer who fully understands how an ACO works and chooses to participate can perhaps be construed to have consented to some level data sharing. However, absent such a model, a consumer who has been passively enrolled cannot be construed to have consented to any data sharing and must be notified of the ACOs intent to share their data and their right to opt-out of having their data shared. Finally, we note that offering patients electronic access to their medical records and other health information may help beneficiaries understand the importance of (and minimize concerns regarding) data sharing. According to a national survey by the National Partnership for Women & Families, online access seems to be a catalyst for transparency and understanding that helps patients trust their records, and perhaps better understand how data-sharing across providers contributes to well-coordinated-care. 5 Offering patients realtime, electronic access to their health information will not only enhance patient engagement, but may bolster trust and alleviate concerns regarding data sharing, thereby minimizing the number of patients who opt-out. XII. Application Scoring and Selection Patient Centeredness We strongly applaud inclusion of key patient-centeredness criteria including supporting engagement of patients and families as part of the model s eligibility criteria for applicants. As CMS and ACOs pursue enhanced beneficiary engagement, we again emphasize that true engagement goes beyond an annual focus group or an annual patient experience survey to encompass mutually beneficial partnerships at every level of care. Further, engagement must go beyond the notion of getting patients to do what we want them to do. Patients and family caregivers must be systematically and meaningfully involved in all decisions concerning their care, and at every level in care design and redesign, in policy and governance, and at the community level. 6 We commend CMS s continued support for shared decision-making in ACOs. We urge the agency to include even more support for shared decision-making tools and processes through robust program requirements and quality measures. 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. We encourage CMS to draw upon the Consumer Principles articulated in a 2013 report on care planning as a resource. 7 5 Engaging Patients and Families: How Consumers Value and Trust Health IT (2014). Full report available at www.nationalpartnership.org/patientsspeak. 6 For a thorough definition of meaningful engagement and what it entails, please refer to the framework described in the Health Affairs article: Patient and Family Engagement: A Framework for Understanding the Elements and Developing Interventions and Policies, available at http://content.healthaffairs.org/content/32/2/223.abstract. See also: Community Catalyst s Meaningful Consumer Engagement: A Toolkit for Plans, Provider Groups, and Communities, available at http://www.communitycatalyst.org/resources/tools/meaningfulconsumer-engagement. 7 See Care Plans 2.0: Consumer Principles for Health and Care Planning in an Electronic Environment, available at http://www.nationalpartnership.org/research-library/healthcare/hit/consumer-principles-for-1.pdf. 12
At the policy and governance level, engagement should include continued dialogue with consumer advocates as Next Generation ACOs are developed, implemented, and evaluated. This engagement must be coupled with transparent information on the quality of care provided by Next Generation ACOs, as well as spending trends and key data on hospitalizations, readmissions, outcomes, and patient experience of care, stratified by race, ethnicity, sex and language to assess how ACOs are serving beneficiaries of color and/or non- English speaking beneficiaries. Additionally, we urge CMS to require applicant Next Generation ACOs to demonstrate in their applications how they will: Support strong leadership commitment to patient-and family-centered care (through, for example, designating a responsible management position, dedicating specific resources to patient- and family-centered care in the budget, and consistently reinforcing the value of partnering with patients and families to the organization). Incorporate patient- and family-centered care criteria and principles into hiring practices, job descriptions, performance reviews, and compensation. Assess and improve engagement of consumers and beneficiaries at every level, including in their own care, as well as in governance and policy, care redesign, and at the community level. We urge CMS to make clear how it will monitor ACO compliance with such criteria beyond the application stage. Evaluating ACOs progress on plans described in applications and truly holding them accountable for patient- and family-centered care is essential to improving care. We would be interested to learn more about how CMS plans to monitor and evaluate implementation of these criteria and how the results are being used to foster ACOs continued improvement in engaging patients and families, and integrating a focus on patient- and family-centeredness that is promoted by leadership and the governing body. Appendix G: Application Template Patient Centeredness and Beneficiary Engagement We are pleased to see CMS is requiring Next Generation ACO applicants to describe the ACO s ability to provide beneficiaries access to their own medical records and related clinical knowledge needed to make informed choices about their care. We encourage CMS to explicitly reference patient electronic access to health records and other clinical information. Our 2014 survey found that patients with online access to the health information in their providers EHRs overwhelmingly use this capability: 86 percent log on at least once a year, and more than half (55 percent) log on three or more times per year. The data clearly show that online access has a positive impact on a wide range of activities that are essential to better care and improved health outcomes, including knowledge of health 13
and ability to communicate with providers. More frequent online access has an even more dramatic impact. Patients who used online access three or more times per year reported a markedly greater impact (20 percentage points higher) across these domains of care. Even more significantly, the more often individuals access their health information online, the more they report that it motivates them to do something to improve their health 71 percent, compared with 39 percent who used online access less frequently. This frequency of access clearly has profound implications for engaging patients and improving health status. We encourage CMS to consider requiring ACOs to delineate their plans for partnering with patients and families to make health information electronically available and useful to patients and families. As we previously stated, ACOs should have at a minimum standards and processes in place for beneficiaries to electronically access their health information in a way that is aligned with the EHR Meaningful Use Incentive Program. Conclusion Thank you for the opportunity to comment on the Next Generation ACO model. We reiterate our appreciation for the work that CMS is undertaking to move us toward more accountable care. If you have any questions about our comments and recommendations, please contact Lauren Birchfield Kennedy, Director of Health Policy at the National Partnership for Women & Families, at lkennedy@nationalpartnership.org or (202) 986-2600. Sincerely, [SIGN-ONS] CC: Andy Slavitt Acting Administrator, CMS 14