AcademyHealth Engagement, Empowerment, Enhancement: The Role of Consumers in Health Care and Advocacy

Editor's Notes

• #4: In 2012, the Gordon and Betty Moore Foundation engaged the American Institutes for Research to convene a diverse group of stakeholders to forge a unified vision—a roadmap—for achieving meaningful patient and family engagement across the U.S. healthcare system. Building on decades of collected experience and evidence, this extraordinary effort by patients, advocates, clinicians, researchers, payers, funders, and policymakers provides a clear path forward. In the next 20 minutes, I’d like to discuss with you the societal, policy, and organizational factors that have shaped the patient and family engagement landscape, and then discuss our attempts to bridge key gaps in that landscape by creating a national roadmap for making patient and family engagement a reality.
• #5: The current U.S. health care system is structurally and culturally provider-centered, not patient-centered—in spite of the intentions of many stakeholders. Many factors influence whether and to what extent patients are able to engage. The Patient and Family Engagement Framework that we published in Health Affairs in 2013 groups these factors into three categories: those related to patients, organizations, and society. Each set of factors acts on its own, and in conjunction with the other sets, to affect patients’ actions and engagement. Much of the work on patient and family engagement has focused on engaging patients more effectively at the level of direct care (e.g., obtaining preventive services, adherence to treatments, self care for chronic conditions), as well as on developing shared decision making tools and implementing them into routine care, albeit with limited success (Elwyn et al., 2013). Recent organizational innovations in health care have also focused on more patient and family engagement in direct care, including Accountable Care Organizations (ACOs), patient-centered medical homes, and interest in adopting patient-centered approaches to measuring health care outcomes and assessing provider performance. However, adoption of patient and family engagement efforts significantly lags behind research innovation. Efforts have focused less on involving patients and families in all aspects of care decisions, in organizational design and governance, or in the broader policy-level issues. Indeed, most work partnering with patients and families at the organizational design and governance level has been done by a few innovative organizations with exceptional commitment to patient and family engagement. Until recently, few compelling policy or financial incentives have motivated a broader set of organizations to change and to partner at the design and governance levels.
• #6: It’s one thing to articulate a vision – but more important is how we go about achieving it. In the roadmap, the answer to “how do we go about realizing this vision” is found in the 8 change strategies. The 8 change strategies identified in this roadmap describe priority areas for action in practice and research and reflect areas with significant opportunity for growth and change and where improvements can help drive progress toward key patient and family engagement-related milestones and outcomes. In short, the describe the ways in which we all need to be moving the field forward. For each change strategy, the roadmap provides examples of tactics, or ways in which the change strategy can be executed along with milestones to help assess whether and to what extent we are progressing toward ultimate outcomes.
• #7: We hope that organizations and individuals will review these strategies and tactics, and think about opportunities to push your current work further. Are there ways in which you could be driving toward greater partnership with patients and families? Opportunities to work across strategies to create more of an impact? We also hope that the roadmap will help people identify partnerships – while all of these change strategies are important, none of us can do this work alone – this is about creating a community and partnerships to drive progress toward outcomes – and using the roadmap to identify where there are opportunities to partner with others who have similar or complementary interests and goals. The roadmap can also help catalyze your efforts. A key component of the roadmap are the 5 Simple Actions – we’ve developed 5 simple actions for key stakeholder groups – patients, clinicians, health care organizations, policymakers—to jump start efforts. While change takes time, the beauty of the 5 simple actions is that you can do them today—taking steps toward change now. As Sue Collier noted in this quote, the power of the roadmap will only be realized when we take action – and it’s this action that will drive us toward true partnership between patients, families, clinicians, health care leaders, health care organizations, and all interested stakeholders.
• #8: As we’ve noted, the goal is to create community and partnership around the roadmap, but more importantly, around this work. Given this, we encourage people to explore the roadmap website, download the roadmap, take from it what is helpful, and share this work widely. Please share your thoughts, reactions, and opinions with others and online – we’ve found that Twitter is a great way to spread the word, and we encourage people to tweet with the hashtag #PFEroadmap. Also, at the end of the convening, participants stood up and offered their commitments to push this work forward – it was a very powerful demonstration of their dedication to this effort. You can read these commitments and add your own at the website, www.patientfamilyengagement.org. The roadmap website also includes information to help you implement the change strategies – the resources section contains many helpful implementation guides and toolkits, case studies, and other materials from individuals and organizations who have been on the ground with this work. If you have additional resources that you think would be helpful, please submit them online at the website and we are happy to post them.
• #9: Finally, our own commitment is to continue pushing this work forward, making information and tools available to the community, and helping to unify efforts. To that end, let us know how we can help. . And, we want to hear about your work. If you are doing things related to any of the change strategies, let us know what you’re doing and we’ll share it out. We thank all of you for your time today – we look forward to seeing this work continue as we all partner to move toward more patient and family engagement, and ultimately a better healthcare system.
• #11: The 2010 Affordable Care Act promoted the creation of health care models that are patient-centered and engage consumers in their health care. There are several provisions of the law that require patient-centered measures be used when measuring quality care. Here, “patient-centered” measures refer to assessments of patient experience, satisfaction, engagement, and patient-centeredness of care. One widely-used measure, the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS), is a 27-item survey that assesses consumers’ experiences and satisfaction with their hospital’s health care (Centers for Medicare and Medicaid Services(a), 2014). HCAHPS results are part of the criteria for the Centers for Medicare and Medicaid Services’ Hospital Value-Based Purchasing program. This program, initially brought into law through the Affordable Care Act, uses a Medicare payment structure that rewards hospitals for the quality of care provided to patients and is now in use by 3,500 hospitals across the U.S. (Centers for Medicare and Medicaid Services(b), 2014). Our goal is to describe, compare, and contrast strategies and tactics consumer advocates are currently using to increase consumer engagement within these ACA programs and the broader health care system.
• #12: We are conducting a three-year, multi-site evaluation of three national organizations funded to ensure the effective and meaningful inclusion of consumers in decision making related to major ACA health care delivery provisions for vulnerable populations. Through several qualitative data collection methods (key informant interviews, focus groups, record review, and observation), the evaluation assesses the effectiveness of the organization’s advocacy models, as well as the collective impact of the three organizations working in a coordinated fashion.
• #13: Collectively, the aim of the CBC is…
• #14: Framework to illustrate the range of definitions of consumer engagment. The text within the lighter colored boxes in rows to the right of the Levels of Engagement are examples.
• #15: This initiative – the Campaign for Better Care --- focuses primarily on: ORGANIZATION POLICY MAKING Along the continuum, the focus covers consultation, involvement and Partnership & Shared Leadership.
• #16: CMS, specifically the Medicare & Medicaid Coordination & the Innovation Center, has several areas of focus (top row)…. These areas of focus have three initiatives (middle row)…
• #17: 3 grantees in the project – 1st one: Community Catalyst… Original slides: Organizational focus: Works to build a nationwide network of local and state health advocacy organizations and coalitions through sharing expertise via TA, creating learning communities, and providing resources, relationships, strategies, and information to strengthen those advocacy organizations and coalitions Primary CBC Goals: Shaping state policy development and implementation to incorporate consumers; institutionalizing consumer involvement in state policy as well as provider/health plan activities CBC Approaches: Support to state advocates via TA, learning communities, and providing resources, relationships, strategies, and information to advance state and local policy agendas Setting: Urban and rural communities and state capitols
• #18: Original slides: Organizational focus: Advocates at the federal level for policies and laws that help women and families and supports effective implementation at local and state levels through technical assistance, consultation, and learning communities Primary CBC Goals: Supporting implementation of consumer engagement provisions in CMS new models of care delivery and quality improvement demonstrations among hospitals, primary care practices, and ACOs CBC Approaches: Technical assistance and consultation to CMMI and providers (hospitals and primary care practices); uses a combination of intensive TA and consultations, including training materials, site visits, “office hours” with selected provider groups, etc. Setting: Localities where CMS demonstrations are taking place
• #19: Original slides: Organizational focus: Utilizes faith-based community organizing to address multiple problems and concerns within congregations & communities based on shared values Primary CBC Goals: Empowering consumers at the local level to become involved in collective action to improve individual and community health and well being; achieve Medicaid savings for care to high utilizers and return savings to local communities to further support community health CBC Approaches: Community organizing among Hot Spotter patients and community members to identify collective concerns and implement PICO organizing model; direct patient support as part of care management in some areas Setting: Communities served by local participating PICO federations
• #20: Useful? Too much detail/information? – Leave in for now; split into 2 slides From original slides (edited to reflect same language as strategies/tactics slides): Consumers serve on decision-making bodies (e.g., ACO/hospital/primary care practice advisory councils, quality/safety/performance improvement committees ) Creation of formal mechanisms for obtaining consumer feedback on health services and health service needs (e.g., membership surveys)
• #21: Useful? Too much detail/information? – Leave in for now; split into 2 slides From original slides (edited to reflect same language as strategies/tactics slides): Consumer use of programs that help individuals and family caregivers be more engaged in their health (e.g., evidence-based programs such as the Chronic Disease Self-Management )
• #23: Examples of tactics from the CBC project Useful? Too much detail/information? – Claire said to leave as is for now
• #24: Strategy #1: Educate, Engage & Influence Federal & State Policy Makers to Incorporate Consumers’ Needs & Interests into Policy Tactics: Draft model policies and laws and otherwise help shape legislation Work with federal and state officials on the development of regulations and rules for implementation of new laws Track the impact of legislation on target populations Monitor public officials to hold them accountable Example of CC’s work at the state level
• #25: Strategy #2: Engage Consumers to Participate in Decision Making & Ensure Their Perspective is Heard Tactics: Assist in recruiting for and support consumer participation on advisory councils Assist in training consumers to participate in advisory councils or boards Train consumers to educate and advocate with policy makers, plans, and providers Use compelling patient stories to illustrate conditions and motivate action Educate consumers about their rights in the health care system Provide direct assistance to individual consumers Example of NP’s assistance in creating advisory councils
• #26: Strategy #3: Engage Health Plans & Providers to Genuinely Involve Consumers in Decision Making Tactics: Provide health plans and providers with technical assistance and other supports to promote staff’s understanding of consumer engagement and patient-centered care Provide providers and plans technical assistance and educational tools to support their engagement of consumers in decision making related to service delivery Assist plans and providers to recruit and support consumer participation on advisory councils Again, example of NP’s assistance with advisory councils (as pertains to above)
• #27: Strategy #4: Engage With Other Organizations to Act Collectively in Support of Consumer Engagement Tactics: Create sustainable “learning communities” amongst existing organizations in the advocacy community to work collectively Convene stakeholders to communicate on issues related to consumer engagement. Sponsor roundtables and other events that convene a wide range of stakeholders and then facilitate communication among these stakeholders on issues pertinent to consumer engagement Build stronger “advocacy networks” or coalitions by forging communication and ties amongst already-existing consumer advocate groups in a specific region or locality Example of PICO’s work with community groups or with using patients as story-tellers of their success/advocates
• #28: Original slide: Flexibility matters Relationships matter Creating a learning community is important Focusing on both the system level & local level is important Flexibility matters: The context and timing of CE efforts can lead to delays or quick progress Advocates learn as they go. Relationships matter: History can create long-standing relationships, either positive or negative Creating a learning community is important: Sharing of expertise and skills is important Focusing on both system level and local level is important: Tailored “tools” and a local focus can lead to success at the site level Pursuing policy system level levers accelerates and systemizes the consumer engagement agenda
• #29: Provider/clinician investment in consumer engagement is crucial Consumer engagement must be incorporated into concurrent system reforms
• #30: Common challenges: consumer health literacy & complexity of the health care system --- fear of feasibility of changes – providers concerned about being able to responsive to consumer feedback
• #31: For advocates: - Does consumer engagement make a difference? – need to be able to assess that CE contributes to outcomes For evaluators & researchers: Need more & better metrics in order to demonstrate the value of consumer engagement in improving health outcomes Need for sustainable and scalable model: scalable model especially important with state demonstrations
• #33: Name and title. We organize and unite the power of individuals and organizations to address issues that impact them. On health care we have worked for many years to expand access to care and health, always from the consumer perspective or as we like to call consumers – people. We have worked closely with Community Catalyst for many years now, and in partnership with the RWJF, to build a system of advocacy in Minnesota.
• #34: Today I want to talk a little about what that system of advocacy has accomplished, and what role advocates are and can play in Health System Transformation. Minnesota has among the most comprehensive coverage… This graphic shows how these various programs fan out across the income spectrum, with others like Medicare and the VA, being dependent on non-income factors We are also a leader in health system transformation as a state with a SIM grant, many public and private ACOs… TAMN and other advocates has played a very active role in coverage expansion, and like advocates in many other states have been interested in and somewhat engaged in health system transformation issues like reigning in costs in our managed care programs, looking at the relationship between health care needs and transportation and housing, sitting on committees here and there – but we have lacked capacity to engage as fully and are really focused now on engaging further.
• #35: So as an example, want to talk about how Minnesota’s consumer advocacy community, and TAMN specifically, have worked over the past several years to protect and expand MinnesotaCare. Should say – “is making possible” because we’ve had a few rounds on MNCare, one which just finished up, and this presentation will touch on just a couple of them. MNCare is a program that serves low-income workers between Medicaid and affordable private coverage. Earning $16-24K for an individual = about $8-$12 an hour. Founded over 20 years ago and, thanks to advocates’ work, not lost but improved during the transition to the ACA. This front page article was, in fact, the result of advocacy and a part of our strategy to make sure that the public, and stakeholders, were not confused about a new proposal that said it would simply “modify” MNCare. We knew that it had to be clear what was at stake was the end of MNCare. We worked with the Minnesota Budget Project, Legal Services Advocacy Project, AARP, health care unions, and others to understand the proposal, explain it to reporters, and put a human face on it.
• #36: An early battle was to get the federal government to release regulations on the Basic Health Plan in time for Minnesota to take advantage of it. We mobilized over 80 (?) organizations to work with the Dayton administration and our congressional delegation to get those regulations issued in time. This is Senator Franken receiving an award at our annual dinner that year where he shared the story of making the ask to President Obama on AirForce One as they flew to Minnesota after a fatal shooting at a print shop here where Obama spoke about gun control. Disclaimer: Not every campaign involving consumer advocates will result in a conversation on Air Force One, but some will.
• #37: At the same time we had to keep the legislature from proactively ending MinnesotaCare. Successful advocacy requires making complex issues simple – or at least simpler, and putting them in terms people can understand. This Infographic was shared on facebook during 2013 legislative session, and this photo shows another image we used to simplify how MinnesotaCare fit in to a number of complex issues that year. This round ended with an improved MNCare.
• #38: This year there was again a proposal to proactively end MNCare. John and Ruth are among many who have shared their stories to help others. All of our advocacy hinges on people – whether it’s a bunch of people at the Capitol, emails to legislators, stories in the press or on social media, or wading into the regs. We need to engage people to get it done, and we need input from people to know what needs to be done. We find people and connect them – John is someone one of our organizers met going door to door in lower-income pockets in the suburbs to hear people’s stories and inform them about enrollment opportunities through MNsure. John was someone we found who had already found MNsure and through it MNCare - he lost his job two years ago and couldn’t afford the $789/month Cobra premium. So, he went without insurance. When MNsure opened, he enrolled and found out that he qualifies for MNCare. He then found out his diabetes had worsened while he was uninsured, and he was able to treat it and, unfortunately, have his toe amputated before it worsened. We collect stories at enrollment events and on transit as well. Ruth was referred to a navigator by a friend of hers who is active with TakeAction, and from there she got engaged working to preserve MNCare. This is her testifying at around 10:30 at night after sitting with me in a hearing room for 9 hours.
• #39: The results of this round were mixed. We saved the MNCare program, but lost funding for it. $65 million in cuts were made without much thought to what that means to the real people on the program. During the last, harried weekend of legislative session, we scrambled to put this number into relatable language. We figured out that it means a tripling of out-of-pocket costs for consumers, and then called some of our story tellers to find out what that means for them. We received answers like “I’ll have to skip some of my ‘optional’ health care like my anti-depressants,” “I won’t be able to send my kids on a field trip,” “I won’t make my car payments,” “It’s tough because my rent just went up, too,” and “I’ll think twice about going to the doctor.” We were able to share out those stories on social media and did make an ask of the governor to rescind the cuts. Unfortunately, this did not happen, which means we will probably be fighting for MNCare next session, too.
• #40: There has been consumer engagement in individual efforts – Hennepin Health, St. Stephen’s working with individual HMOs to provide case workers for homeless Medicaid enrollees. There is room for much more of that but also for a consumer role a level up. Thinking about the roles I’ve described, how could health system transformation efforts be strengthened or expanded with that kind of engagement?
• #41: Final thought – to give the most meaningful input, consumers need support. Think about going through existing organizations that have relationships and knowledge. Think about funding the participation of those who don’t get paid specifically to engage on these issues.