Posts About Health System Transformation

During this Older Americans Month, we want to pay tribute to a leader with whom many Health Policy Hub readers may not be familiar: Nelson Cruikshank. Nelson was a longtime leader in the labor movement who was instrumental in creating two of the most important programs for vulnerable older adults and people with disabilities: Social Security Disability Insurance (SSDI) and Medicare.

Born in 1902, Nelson grew up to become a Methodist minister and, later, a union organizer. After a series of jobs in the federal government – including one setting up camps for migrant farm workers, a program later made famous in John Steinbeck’s novel, The Grapes of Wrath – Nelson became director of the AFL-CIO’s Department of Social Security. It was there that he worked to forge a political coalition that would go on to help win passage of SSDI legislation in 1956. Nelson then turned his attention to health care. Inspired by the effectiveness of community health clinics in the migrant camps he had established decades earlier, he organized a coalition of health care and senior organizations to push for a medical assistance program for older adults. This coalition took on the powerful American Medical Association, which opposed national health insurance. These efforts culminated in the passage of Medicare in 1965, signed into law by President Lyndon Johnson.

Nelson retired from the AFL-CIO soon after the passage of this landmark law, but continued to work on behalf of older Americans and people with disabilities for the next two decades. He served as president of the National Council of Senior Citizens – now known as the Alliance for Retired Americans – an organization formed out of the coalition he had created to urge the passage of Medicare. In 1977, President Carter appointed him as his chief advisor on the aged. In this role, he led successful efforts to preserve Social Security benefits.

I first learned about Nelson from his daughter, Alice Hoffman, who I encountered while making ACA defense phone calls. This serendipitous conversation also led me to learn that Alice is an impressive advocate in her own right. At 86, she lives in Pennsylvania and takes an active role in defending the ACA, including her efforts as a member of the Pennsylvania Health Access Network. Alice recounted a story of a visit to her retirement community from her congressman, who told the audience of older adults that while Medicare and Medicaid were going to undergo drastic changes, they wouldn’t have to worry since it “won’t affect you.” No shrinking violet, Alice immediately stood up and challenged the representative’s assumption that older adults don’t care about the next generation. Her comment was met by loud applause and cheers from her fellow audience members. More recently, Alice has become very involved in a coalition working to advocate for a single-payer health system, carrying forward her father’s vision of achieving high-quality, affordable health care for all.

It was an honor to meet Alice, learn about her father and know that his legacy of advocacy has been passed on to the next generation. She truly embodies the spirit of this year’s Older Americans Month theme, powerfully demonstrating what it can mean to “Age Out Loud.”


It’s May, and that means it’s Older Americans Month. This year’s theme is Age Out Loud, chosen “…to give aging a new voice – one that reflects what today’s older adults have to say.”

Older Americans are a group that have a lot at stake in ongoing health system transformation initiatives. A vital goal of the Center for Consumer Engagement in Health Innovation is promoting the meaningful role older consumers can exercise when they lift up their voices. Several of our staff members recently met an older adult who perfectly exemplifies what it means to stand up and speak out loudly for better health out of one’s own life experience. Kathy Paul is a 69-year-old resident of Lynn, Massachusetts and an active member of the Massachusetts Senior Action Council. The Council, founded in 1981, is a statewide, grassroots, senior-led organization that empowers its members to use their own voices to address key public policy and community issues that affect their health and well-being.

Kathy spoke out loudly at a press conference in Boston on May 8 [video courtesy of BNN – Boston Neighborhood Network] on the American Health Care Act, a bill that would result in significant cuts to care for older adults. The bill was passed by the U.S. House of Representatives and is now pending before the Senate. Kathy joined Sen. Edward Markey and other community leaders at the event, including speakers from Health Care For All, Community Catalyst, Health Law Advocates, Boston Medical Center GROW Clinic, Disability Advocates Advancing Our Healthcare Rights, Massachusetts Senior Action Council, Massachusetts Organization for Addiction Recovery, the American Cancer Society Action Network and the American Heart Association.

Kathy introduced herself “…not just as an activist, but as a mother of five, a grandmother of 10, and a great-grandmother of five, who is deeply concerned about the future of health care.”

She continued: “As a senior, I live on a very limited fixed income and I rely on MassHealth [the Massachusetts Medicaid program] for my health care. I feel very fortunate because, for the most part, I am very healthy. I don't take any medication and stay very active. But I know the reality of when that's not the case. My husband had several very serious health conditions including diabetes and kidney failure. He had to endure two amputations below the knee and was on dialysis three times a week. If it was not for MassHealth, we would never have been able to cover his care. I am thankful that I was able to focus on taking care of him rather than worrying about how we would pay for the care he needed or being denied because we did not have the money to meet a huge deductibleThis debate is not about party politics. This debate is about the wealthy getting wealthier and the rest of us paying the price. We cannot allow this assault on our right to basic health care to move forward. We must speak up and speak out.”

Kathy first got involved with the Massachusetts Senior Action Council in 2007, while her late husband was still alive and she was putting most of her energy into the demands of caring for him. After he passed away in 2012, it was a turning point in her life. She explains, “With more time on your hands, what do you do? Just sit in the house, stare at the walls and complain, or get out and do something about it? What our group likes to say, ‘we don’t just take it, we take charge!’”

In recent years, ‘taking charge’ for Kathy has meant testifying at the Massachusetts Statehouse against rate hikes for older adults using public transportation services and advocating for genuinely affordable housing options for older adults in the Commonwealth. And on a Monday morning in May, it meant joining hands with her United States senator and telling her story from the podium to a bank of television cameras and assembled reporters.

We can’t wait to see what she’ll do next.

During this month, let us know at @ccehi how you #AgeOutLoud!

With our thanks to Kathy Paul for her guest contributions to this post.

Here at the Center for Consumer Engagement in Health Innovation, we hold the core belief that the voices of consumers are essential for making our health care system better: easier to navigate, more user-friendly and more effective at addressing the things that matter to patients, families and caregivers, and communities. We work toward increasing the engagement of consumers at three levels: in the clinical setting; at the level of the health care organization or practice; and in health care policy-making.

While there is a robust and growing body of research that examines how and why to engage consumers in the clinical setting (first level), there has to date been less evidence examining the engagement of consumers at the other two levels.

This is why I was delighted to find several articles published over the past year that examine the engagement of consumers at the organization/practice level. Here are my brief notes from four papers in this sphere that I found valuable:

In “Engaging patients in primary care practice transformation: theory, evidence and practice,” published in Family Practice in 2016, authors Anjana Sharma and Kevin Grumbach review the evidence for the efficacy of patient engagement in primary care practice, at the clinic or practice level. They retrace the history of patient engagement, noting the establishment of federally funded community health centers in the 1960s, with the requirement that health center patients must comprise at least 51 percent of a center’s community advisory board. They summarize the conclusions of systematic reviews published since 2000 on the effects of patient engagement at the practice level and note some promising findings related to improved workflow, access and understandable patient information. Finally, they identify strategies for promoting patient engagement at the practice level, including things such as patient surveys, town halls and patient advisory councils, summarizing the advantages and limitations of each.

Dr. Sharma is also the lead author on another 2016 paper focusing on patient advisory councils, published in the Journal of the American Board of Family Medicine. The paper takes its title from a question posed by one of the study participants: “How can we talk about patient-centered care without patients at the table? Lessons learned from Patient Advisory Councils.” The authors identified nine primary care clinics in Northern California with high-functioning patient advisory councils and interviewed one clinic staff member and one patient member of the advisory council at each site. The interviews reinforced the importance of recruitment and training of patients, as well as of support for the training of staff facilitators. They note that training of consumers likely will be particularly important to increase the diversity of advisory council representation to include patients from hard-to-reach populations, an area of active work for us here at the Center.

A multilevel analysis of patient engagement and patient-reported outcomes in primary care practices of Accountable Care Organizations,” by Stephen Shortell and colleagues in the February issue of the Journal of General Internal Medicine analyzed patient engagement and patient-reported outcomes for patients with cardiovascular disease or diabetes in 16 primary care practices within two accountable care organizations: Advocate Health Care (AHC) in Chicago, IL and DaVita HealthCare Partners in Los Angeles, CA. The authors found that in practices that scored higher on a scale of “patient-centeredness” (made up of five questions related to how well the practice incorporates patient feedback), patients were less likely to report symptoms of depression and more likely to report better physical health outcomes. Interestingly, a 39-item scale completed by practice administrators listing various engagement activities was negatively associated with patient-reported outcomes, suggesting that the cultural dimension of patient-centeredness may be more important than simply increasing the number of engagement activities practices implement. This suggests that we need to go beyond “checking the boxes” when it comes to patient engagement activities and focus on creating a pervasively patient-centered culture of care.

Finally, I enjoyed reading about a family medicine clinic in Calgary that established a patient advisory council. “Patient and citizen innovation in family practice,” by Ron Garnett and others in Canadian Family Physician describes how the clinic recruited patients for the council. It also describes the activities completed by the advisory council to date, including delivering presentations to family medicine residents and staff on the role of the council, establishing patient liaisons to several committees and conducting a pilot patient experience survey. Future areas of interest for the advisory council include developing systems to routinely and accurately measure and enhance patient satisfaction, immersing learners in a culture of patient-engaged clinic service, and developing a mechanism for ongoing evaluation of the outcomes and effectiveness of the council’s activities. I certainly look forward to hearing more about their progress in these very important activities.

Taken together, these papers help to build out our nascent base of evidence around the “hows and whys” of patient engagement. As this field develops, I look forward to sharing many more research updates with you in the future.


“Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.”

– Winston Churchill, 1942

On the heels of the 7th anniversary of the signing of the Affordable Care Act (ACA), House Republican leadership abruptly withdrew the American Health Care Act – their plan for repealing and replacing the ACA – from a long-promised floor vote. Many of us breathed a (brief) sigh of relief, particularly for the 24 million Americans who could have lost their health care coverage if this bill had been enacted.

But even as we celebrate the integral role consumers – including many older adults and people with disabilities – played in defeating the bill, the work to improve health care is as urgent and pressing as ever. Now that we’ve reached what we hope is the “end of the beginning,” here are three things we’re doing here at the Center to create a more person-centered health care system:

Identify and disseminate innovative models of care.

There has been tremendous progress in the development and rollout of innovative models of care that improve health and outcomes, often while saving money at the same time. For example, Massachusetts’ Community Support Program for People Experiencing Chronic Homelessness (CSPECH) provides supportive services to help people obtain and stay in housing. The benefits in quality of life and improved health have resulted in annual per-person net savings of up to $7,013. This year, the Center will highlight innovations that are person-centered, responsive to the needs of the community and built with consumer input in a series of publications we’re calling, “What Works.”

Build a network of consumers who can drive health care innovation.

Consumers have a unique and critical role to play in ensuring that health innovation efforts result in care that is oriented around the needs of the people served. As such, the Center recently awarded a series of grants, with more on the way, to help state consumer advocacy organizations build out a base of consumers – particularly older adults, people with disabilities and those from communities of color – who can drive person-centered care innovation in their states. Over the next year and supported by one-on-one technical assistance provided by the Center, our grantees plan to reach out to 22,000 consumers, sign up roughly 2,000 consumers to engage with our partners and develop 90-100 new consumer leaders who can advance health care innovation.

Stand up for person-centered care.

Despite the AHCA’s late March collapse in the House, I expect that there will continue to be threats to comprehensive, person-centered care. For one thing, there may be more attempts at “repeal and replace”. But even short of repeal, threats might come in the form of policies that limit eligibility for and/or complicate enrollment into coverage, increase financial barriers for accessing care, take away support for innovative care models, or reduce services (for example, non-emergency medical transportation) that we know are critical for health and which are cost-effective, too. As new proposals come forward, we will assess them through the lens of whether they will improve health, particularly for people with complex health and social needs, and we will continue to sound the alarm about programs that co-opt the language of person-centeredness to instead impose policies that hurt the most vulnerable.

While March 24, 2017 perhaps marked the end of one chapter in the history of health care policy in the United States, it is certainly not the end of the journey to improve health care. We have much work ahead and I look forward to sharing this journey and its inspirations, challenges and, hopefully, celebrations as we move forward.

What’s the one thing you’d change about the health system tomorrow to make it more patient-centered? Tweet us @ccehi and share your thoughts!

I recently had the privilege of joining partner advocates at the Rhode Island Organizing Project (RIOP) at a “house meeting” in the Providence community. RIOP staff have long used house meetings as a powerful organizing tool, gathering consumers in comfortable settings in or near their homes to engage in meaningful conversations on important issues that affect their health and well-being. The gatherings have a particular focus on vulnerable and historically disempowered populations such as low-income older adults and people with disabilities, including those in minority communities.

This meeting was at a low-income senior housing residential building. There were 12 attendees and eight were Spanish speakers with limited proficiency in English. I was so happy to be there and have the opportunity to hear from the Latino community while serving as a translator for the RIOP organizer. The major issues attendees talked about were their difficulty in getting access to home-based care and needed dental, vision and hearing coverage. Several older adults also spoke about their isolation, which was very compelling.

This was the first time that RIOP organizers were reaching out at the residential level to the Latino population in Providence. They were able to provide vital information about help with the new 50-cent fare on the city bus system for people with disabilities and adults over age 65. Previously, those two groups rode Rhode Island Public Transit Authority (RIPTA) buses free. RIOP and other advocates fought hard against this new fare over the past years, but it went into effect in February of this year. Now that it’s here, the one option to soften the blow is a RIPTA card that provides 10 free trips monthly. This is not much, but it is vital assistance to low-income people struggling to balance all their needs each month on very limited funds. RIPTA had posted the application for this program online in several languages, including Spanish, but finding it requires access to and familiarity with computer use. So, for many of these Spanish speaking folks, this was the first time they were learning about this benefit’s existence. After the meeting, they went directly to City Hall to obtain their 10-ride bus passes. 

They also learned about the new INTEGRITY Plan, the state’s recently launched dual eligible demonstration project at Neighborhood Health Plan of Rhode Island for older adults that coordinates all Medicare and Medicaid benefits and services. Some of those eligible had received letters in Spanish about this new plan but still needed more information and clarification. They were confused as to why their existing insurance plan was asking them to consider this new plan, and worried about making any changes that might interrupt their current care. The RIOP advocates were able to provide them with the contact number of the ombudsman program for the Integrity plan, which offers information in Spanish. 

These were two practical and empowering things these consumers learned about at the meeting.

What this experience reinforced for me is how much people long to be heard and understood. I learned that there is a pressing need for health care information for the Latino population. It is not enough to simply know about their issues and fight for what we think will benefit them, but that we need to be able to meet and engage personally with people across a diverse range of communities. That is what the advocates in Rhode Island are doing by revealing their presence to this community. They are building meaningful new relationships; they are building bridges. RIOP advocates understand that all people have the right to be informed of decisions that affect them, to be involved in the process and to participate actively in their own health care. By attending these meetings, sharing their stories and partnering with local advocates, consumers from diverse language communities can in turn play a major role in working for just, consumer-centered health care policies. 

On top of the uncertainty surrounding Medicaid expansion and Medicaid funding stemming from GOP Affordable Care Act (ACA) repeal efforts, HHS Secretary Tom Price and CMS Chief Seema Verma’s recent letter to governors adds another layer of change and uneasiness. This letter affirms the new administration’s intent to use Section 1115 Medicaid waivers to cut key consumer protections that have made Medicaid a vital, comprehensive source of health and financial security to millions of low-income Americans.

Concerning Waiver Directions

Strong evidence demonstrates that Medicaid is efficient and cost-effective – and that the ACA’s coverage expansion has had a positive effect on state budgets and enrollees’ health. Nevertheless, the Price-Verma letter gives states the green light to move towards Medicaid policy provisions that could lead to loss of coverage and access to care, and potentially hurt state budgets, such as:

  • Cost-sharing requirements. Studies show Medicaid beneficiaries lose coverage and experience barriers to care when states impose premiums and copayments. An evaluation of Indiana’s most recent waiver suggests beneficiaries who are subject to copayments likely have higher use of the emergency department (ED) as a result. Collecting premiums and copayments has shown to be inefficient and costly.
  • Eliminating non-emergency medical transportation (NEMT). Medicaid beneficiaries are more likely than those privately insured to have health care access barriers and NEMT helps bridge that gap. NEMT helps Medicaid expansion enrollees access critical care and treatment including behavioral health services, preventive health services and substance use treatment.
  • Copayments for non-emergent use of the ED. Copayments do not reduce unnecessary use of the ED, financially burden Medicaid consumers and fail to address larger systemic health care access issues.
  • Waiving presumptive eligibility and retroactive coverage. These provisions facilitate access to care and important protections for both enrollees and the providers that serve them, especially when there are delays in the application and enrollment process.
  • Support for work requirements. The letter stops short of explicitly saying it will approve work requirements, but includes language that strongly encourages states to impose training or work programs. Work requirements would be onerous on beneficiaries (most of whom are already in working families) and costly for states to administer.

We are troubled by a few other aspects of the letter. First, HHS’ intention to expedite waiver approvals and extensions may roll back important public input and evaluation requirements that have supported a fair and transparent waiver approval process. Second, a willingness to approve state waiver requests that replicate approvals in other states is troubling, since 1115 waivers are meant to be temporary demonstrations to test different approaches to providing Medicaid services. HHS should assess the impact of a waiver provision on access to care for beneficiaries in a single state, before approving it across the board.

Finally, the letter expresses an incorrect view that childless adults are not “vulnerable” and do not fit in with the mission of the Medicaid program. In fact, these low-income adults have experienced a historic lack of access to affordable health care, fluctuating income and language and cultural barriers, and thus, are appropriately served by Medicaid. Covering more adults under Medicaid has benefitted state budgets, consumer health and hospitals. Rolling back these gains would be detrimental.

Trump HHS Commits to Combatting Opioid Epidemic, But There’s a Catch

Medicaid is a critical source of coverage for adults with substance use disorders (SUD). For instance, almost 500,000 individuals (most who were previously uninsured) in Ohio have received  treatment for mental illness or substance misuse under the state’s expansion of Medicaid. HHS’ letter commits to continuing the important work begun in the Obama administration to enhance Medicaid services for SUD and improve access to comprehensive substance abuse treatment. For instance, HHS plans to continue the Medicaid Innovation Accelerator Program that provides technical assistance to states in enhancing SUD services. We hope that HHS continues the previous administration’s explicit support of waivers that contained a specific set of evidence-based measures including Screening, Brief Intervention and Referral to Treatment (SBIRT), integration with primary care, recovery support services, and medication-assisted treatment. Of course, the proof of HHS’ commitment will be in what state proposals they eventually support.

However, HHS Secretary Price’s support of ACA repeal and cutting federal Medicaid payments is at odds with the letter’s promise to address opioid addiction. The latest ACA repeal bill would jeopardize an estimated 1.3 million Americans with substance use disorders or mental illness who have received treatment through Medicaid expansion.

Allowing States to Assess Their Own Compliance on Home and Community-Based Services

The letter also says the administration will give states more time and say in implementing regulations ensuring that long-term services and supports are appropriately provided to people in their homes or communities. Allowing individual states to assess their own compliance could open the door to services that are less responsive to consumer needs and preferences.

Keeping an Eye on Medicaid

The upside to this letter is that none of the harmful waiver provisions listed can take place unless the states themselves choose to pursue such avenues. However, we do anticipate that this is just the first of many regulations and guidances HHS will produce that could undermine consumer protections in Medicaid. We intend to track these developments and provide more resources that equip advocates to push back. Stay tuned!

Reviews are in on the House GOP health care plan, which has been enthusiastically embraced by President Trump, and they are pretty terrible. The plan has been panned by nurses, doctors, hospitals and insurers as well as organizations representing older adults, cancer patients and others. But don't take their word for it, most of the conservative health policy establishment also gives the bill a failing grade. Setting aside the far right ideologues (who also hate the bill, but for different reasons) ACA critics have, among other things, called the plan "worse than Obamacare itself" and say there is "little doubt it will price millions out of the health care market".

Our dystopian health care future under ACHA

Thanks to the ACA, the percentage of uninsured people in the U.S. has dropped to an all-time low. But that progress would be reversed under the GOP’s proposed plan. The Brookings Institute estimates that 15 million people would lose coverage. The combination of reduced tax credits, increased out-of-pocket costs and weak incentives to enroll would touch off an adverse selection spiral that would push premiums higher and cause even more people to drop coverage.

These changes are only the tip of the iceberg. Cuts to the Medicaid program would also force millions more to lose coverage. Cuts to Planned Parenthood would result in an increase in unplanned pregnancies and a significant decrease in health care access for millions of women and LGBTQ people. As the dominoes continue to fall, providers would begin to see revenue go down as uncompensated care costs rise, leading to service cutbacks, layoffs and in some cases, especially in rural communities, hospitals would be at a heightened risk of closure. Resources to combat the opioid crisis would be lost and states' capacity to finance long term care for older adults and people with disabilities would be undermined just as the need increases due to the aging of the baby-boom generation.

It would only get worse as it moves through the House (if it does). The bulk of the discussion in the House has been with the far-right Republican Study Committee and even farther right Freedom Caucus who are demanding more cuts to the Medicaid program. With only 22 votes to spare, it is likely that Speaker Ryan will accommodate their demands and Pres. Trump has already signaled that he is on board.

Why is the bill so bad?

Why have the Republicans produced such a bill so bad that even their own policy experts think it is a disaster? The answer is that the repeal and replace debate has always been a political exercise driven more than anything else by the needs of far-right House members in deep red districts. Their biggest fear is that what happened to Eric Cantor (a successful primary challenge from the right in case you forgot) will happen to them. Their goal is to vote on a bill that hews as closely as possible to the Heritage Action orthodoxy. Whether that bill actually offers a framework for workable health policy or even whether it ever becomes law are secondary concerns.

And while House districts are becoming less ideologically diverse, the bill that is emerging is very bad for a number of states with key Republican Senators.

Consider West Virginia; the state has seen one of the biggest drops in the percentage of uninsured in the country thanks to both Medicaid expansion and ACA tax credits. Additionally, there has been a huge expansion in access to treatment for substance use disorders. As a relatively rural state, both West Virginia’s hospitals and rural consumers would be big losers as coverage declines.

Or consider Alaska; no state in the country would feel a bigger impact from the rollback of health insurance tax credits. On average people in Alaska would receive $10,000 less than they do now.

Or take Arizona, a state with a lot of early retirees and a rapidly growing elderly population. Proposals to increase insurance costs for older adults and cut funding for Medicare could prove very unpopular. And a squeeze on Medicaid funding would undermine the state's successful Medicaid expansion as well as its ability to finance long term services and supports for its aging population.

Maine is in a similar situation even though it did not take up the Medicaid expansion. With the oldest median age population in the country as well as being a relatively low-income state, increases in insurance costs for older adults and decreased Medicaid funding would hit the state hard.

It's no wonder that senators from these states have expressed reservations about the emerging legislation. And it is still unclear that, given differing political dynamics between the House and the Senate, there is enough common ground between the two branches to get a bill through.

Sen. McConnell is a skillful and determined party leader, but success of a bill with consequences as disastrous as this one be might actually be worse for Republicans than failure. Pres. Trump has already put Plan B on the table -- let it (cause it) to fail and blame the Democrats. While they would never admit it openly, some Republican Party leaders may secretly prefer continuing to have a weakened ACA to kick around for a couple more years. If they succeed in passing a law, then they would own the consequences of Trumpcare and it ain't going to be pretty.

All this suggests that the debate over the direction of health policy is far from over regardless of the outcome of ACA repeal efforts over the next few weeks. If a bill passes, Republicans will feel a need to put lipstick on the pig (an effort that will probably be much better financed than defense of the ACA ever was). However, as coverage declines and the effects ripple through providers, state budgets and communities across the country, it will be hard for them to escape the blame. If the legislation fails, expect ongoing efforts to undermine the ACA through administrative action (and inaction) along with efforts to pin the blame for the resulting problems on the law itself. Either way expect the fight to carry right into the 2018 election.


On Monday, March 6, our Center team hosted a briefing at the National Press Club in Washington, D.C. that brought together the voices of leaders of innovative health systems. Titled “Too Much to Lose: Protecting Patients, Protecting Progress in Health Care,” and co-sponsored by The Commonwealth Fund, Missouri Foundation for Health and the Institute for Healthcare Improvement, the event highlighted how the coverage provided by the Affordable Care Act and Medicaid has enabled health systems to improve care for the people they serve in fundamentally new ways. We were honored to be joined by four health and hospital system leaders on the front lines of health care, as well as our two keynote speakers who framed the importance of the presentations in the current national health care environment:

  • Donald Berwick, MD, president emeritus and senior fellow at the Institute for Healthcare Improvement (IHI)
  • David Blumenthal, MD, president of The Commonwealth Fund
  • Glenn Crotty, Jr., MD, executive vice president & COO at the Charleston Area Medical Center Health System (Charleston, WV)

  • Timothy Ferris, MD, senior vice president for Population Health Management at Partners HealthCare (Boston, MA)

  • Steven M. Safyer, MD, president & CEO at Montefiore Medical Center (Bronx, NY)
  • Shelly Schlenker, vice president of Public Policy, Advocacy and Government Relations for Dignity Health (headquartered in San Francisco, CA)

Speakers at the event described programs that help pregnant mothers suffering from addiction to have healthy pregnancies and deliver babies who are substance free and that help to address patients’ needs for housing and food – all interventions made possible by the ACA and which are helping to improve health and thus lower health care costs. The leaders reflected on the ways that Medicaid coverage and the ACA have enabled progress at their institutions, from dramatically increasing the numbers of insured individuals (585,000 Medicaid patients at Dignity Health alone) to improving their financial ability to make investments in programs that connect parents with substance use disorders to behavioral health services.

In conjunction with the event, leaders of 24 health systems and organizations signed on to a statement affirming the importance of coverage as a foundation to health innovation and reading in part: “Nobody can have high quality care if they can't get care in the first place. The ACA’s expansion of coverage, including a Medicaid program with comprehensive benefits, is an essential component of those efforts.”

We were gratified to see so many prominent leaders step forward to share how their institutions have been working to improve care and health thanks to the coverage and innovation initiatives under the Affordable Care Act. With the introduction of the House Republicans’ ACA repeal bill , which also imposes sharp cuts on all Medicaid programs, we know we’ll need these voices of leadership more than ever in the fight to ensure that we protect progress, protect innovation and protect the patients that we all care for.

What are your concerns about the GOP repeal legislation? What innovation are you scared of losing? Tweet us @CCEHI with the hashtag #ProtectInnovation and let us know.

As a crossword puzzle enthusiast, I am always amazed at how many words have multiple meanings. And completely unrelated meanings, at that. Is the answer for “leaves” foliage or departs? Is the answer for “foil” to stymie or a food wrap?

Grammarians refer to a word of a given spelling that has two or more different meanings as a homograph. And in the sphere of consumer engagement, we are having a homograph problem. 

The very words that we have long used to talk about our goals for health care: consumer centeredness, consumer engagement, patient empowerment and consumer direction have taken on multiple meanings. While these multiple meanings are currently uneasily co-existing, the shifting political landscape promises to put them on a collision course.

For example, think about consumer or patient engagement, something we promote and implement in our work here at the Center. Our vision for consumer engagement regards patients as active partners in their care and aligns with definitions developed by the Institute of Medicine, reflected in the National Quality Strategy and incorporated in a number of innovative care models. A new National Academy of Medicine publication defines patient- and family-engaged care as care which is planned, delivered, managed and continuously improved in active partnership with patients and their families to ensure integration of their health and health care goals, preferences and values.

This vision of consumer engagement is important in value-based payment models, where providers have financial incentives to improve the cost and quality of care. Consumer engagement can help contribute to the success of this work, improving the health system in the process, and is an important component of person-centered care.

Yet, there is an alternative vision of consumer engagement driven by a different perspective on “value,” which emphasizes the patient’s role as a “shopper” for health care services. This vision typically emphasizes insurance arrangements in which patients must pay a higher share of the costs of services they use, such as through a high-deductible health plan or a health plan that has high point-of-care cost-sharing. The idea is to incentivize consumers – sometimes even very low-income consumers – to make cost-conscious decisions.

Speaker Paul Ryan’s health care proposal, “A Better Way,” describes the need to “empower Americans and put them in the driver’s seat of their health care decisions.” Rep. Tom Price’s health care proposal was titled the “Empowering Patients First Act.” Seema Verma, President Trump’s pick for administrator of the Centers for Medicare and Medicaid Services (CMS), described the development of the Healthy Indiana Plan, which charges $1 premiums even to very low-income individuals (making less than $500 per year), as “encourage[ing] members to stay engaged with their health plan, providers, and overall personal health.” Under this program, individuals who don’t pay premiums can be downgraded to  coverage that has fewer benefits and which requires paying more for each doctor’s visit, prescription and hospital admission, or they can be blocked from Medicaid coverage altogether.

So, here we have two very different visions employing an overlapping lexicon, one that includes the words “consumer-directed,” “consumer-centered,” “patient engagement” and “patient empowerment,” but with each term conveying wholly different meanings. While there are situations where the two ideas might not directly conflict, those of us who care for (and about) low-income patients with complex health and social needs should be concerned about this etymological appropriation.

This is because some of the program features currently being described as “patient empowerment” – such as requiring patient cost-sharing at the point of care or imposing “lockout” periods from coverage from patients who miss premium payments – make it harder for both patients and providers to establish a care partnership and for patients to obtain the care they need. In particular, research has shown that low-income consumers are more likely to forgo needed care and face worse health outcomes when faced with financial barriers to care.

More subtly, a fundamental premise of promoting shopping behavior – encouraging consumers to seek out the lowest-cost care – can be problematic for patients with complex needs, such as frail elders or people with multiple chronic illnesses, who might be better served by establishing an ongoing care relationship with a team of providers, rather than fragmenting care across many different providers or institutions.

What’s happening now is that established words and phrases with specific meanings are being appropriated to mean something very different. If used often enough in the new context, the new usage can delegitimize the original meaning, or at the least create enough confusion that the power of the terms may be devalued in all contexts. For the appropriators, that is a success in itself.

So what can we do?

I suggest that we, as a community dedicated to advancing consumer engagement as a partnership between patients and providers, be forceful and clear in what we are – and aren’t – talking about. We need to differentiate these two models by talking about “patients as partners,” in contrast to “penalties for patients.” We also need to speak up and call out when policies that are potentially harmful (particularly to low-income consumers) are being misleadingly promoted as patient-centered.

What do you think? Do you have other phrase suggestions or ideas on how to make sure the clarity of our syntax is preserved? Tweet us at @ccehi to share your thoughts!

This blog is part of a series to highlight the dangers of repealing the Affordable Care Act. Multiple times a week, Community Catalyst will highlight a different constituency to draw attention to the benefits the ACA has afforded them and to outline what a loss of coverage would mean.

Olivia's Story

In 2014, Community Catalyst shared Olivia Richard’s story in a video. Olivia is enrolled in the One Care program, the Massachusetts demonstration project which coordinates care for people with disabilities eligible for both Medicare and Medicaid (“dual eligibles”). Olivia uses a wheelchair and relies on personal care attendants (PCAs) to help her with activities of daily living. Before enrolling in the One Care program, she had not been receiving an adequate amount of PCA hours, nor other services she needed to achieve the quality of life and degree of independence she envisioned for herself. After enrolling in One Care, Olivia was able to live independently, with services that met her needs, preferences and goals, thanks to a coordinated plan developed together with her Independent Living-Long Term Services and Supports Coordinator. This was possible because of the Affordable Care Act (ACA), which enabled the creation of the dual eligible demonstration projects now ongoing in Massachusetts and 12 other states (formally termed the Financial Alignment Initiative.)

Fast forward to November 9, 2016: Individuals like Olivia now face the serious possibility that this much-improved coordination of their Medicare and Medicaid benefits may be significantly undermined by repeal of the ACA, impacting the delivery of critical services. Dual eligibles are a particularly vulnerable population – doubly in the line of fire – not only from the immediate attack on the ACA, but also from proposals circulating among the Republican-controlled Congress that threaten to seriously undermine each program in other ways in the future.

Beyond the unfolding rush to repeal the ACA, proposals in favor among Republican congressional leaders and the nominee for HHS Secretary, Rep. Tom Price, would permanently rework the structure and financing of Medicaid and could end the existing guarantee of coverage for all those who qualify for the program. In addition, House Speaker Paul Ryan has for years floated proposals to change Medicare from a defined benefit program to one in which adults over 65 get “premium support” to purchase private insurance, a plan slanted toward benefitting those older adults who are more affluent and in better health, leaving low-income elders in poorer health without the safety net that they have counted upon.

Who Are the Duals?

Dual eligible beneficiaries are entitled to Medicare either by virtue of age (being 65 or older) or by having a permanent disability and receiving Social Security Disability Insurance (SSDI). They are also eligible for Medicaid based on low-income eligibility guidelines. Currently, there are over 10 million dually eligible beneficiaries, with the majority (59 percent) aged 65 and older, and with most of them (73 percent) also eligible for full Medicaid benefits. Dually eligible beneficiaries comprise 14 percent of all Medicaid beneficiaries, but account for 33 percent of Medicaid spending; they also make up 20 percent of the Medicare population, but account for 35 percent of Medicare spending. In part, this disproportionate spending is because dual eligibles tend to have complex health needs, with higher rates of diabetes, mental illness and cognitive impairment. Another reason is that these beneficiaries have to navigate two complex systems, Medicare and Medicaid, which more often than not, has resulted in very fragmented and inefficient care. 

Altering Medicaid Will Have Serious Implications

The most significant implication of GOP proposals to restructure Medicaid – like changing to block grant or per capita cap funding methods – is the strong likelihood that eligibility will be limited and critical services will be cut, as the total federal dollar payments to states would be greatly reduced. Block grants or per capita caps would also limit states’ abilities to pursue innovative strategies that address issues beyond medical services such as access to long-term services and supports and the addressing of social determinants of health, which result in better integrated and more coordinated care. This is true for many low-income populations, but the dually eligible population is particularly at risk.

Medicaid, especially since the passage of the ACA, has served as fertile ground for innovative solutions to addressing health care cost, quality and access issues. Medicaid programs have been vital to improving care for dual eligibles, often serving as a catalyst for innovation. Fundamental changes to the Medicaid program could jeopardize such innovative programs as:

  • The Dual Eligible Demonstration Projects: as noted above, thirteen states are running demonstration programs – like the One Care program in Massachusetts helping Olivia – to better align the financing of the Medicare and Medicaid programs in order to better integrate services for dual eligible enrollees. These demonstration projects could not have been possible without the ACA creating the Center for Medicare and Medicaid Innovation (CMM) and the Medicare-Medicaid Coordination Office (MMCO) within CMS.
  • Medicaid Accountable Care Organizations (ACOs): ten states are actively running Medicaid ACO programs to improve care coordination and delivery of Medicaid benefits by holding providers accountable through quality improvements, increased financial risk and innovative information technology. Some states are using or are planning to use ACOs as a model of care for dual eligibles, such as Maryland and Oregon.
  • Initiative to Reduce Avoidable Hospitalizations among Nursing Facility Residents - the MMCO and CMMI are spearheading an initiative to help improve the quality of care for people in long-term care (LTC) facilities by reducing potentially avoidable inpatient hospitalizations. The most recent evaluation report for this initiative shows a decline in all-cause hospitalizations and potentially avoidable hospitalizations in participating sites. The evaluation report also finds that there were reductions in overall Medicare expenditures relative to a comparison group.

Innovations such as these will be seriously impacted if the ACA is repealed and/or if Medicaid funding were to be radically undermined. Investments in delivery and payment reform in Medicaid are critical and must continue. The dual eligible population has complex medical and social needs and taking away needed services and shifting costs onto a group of consumers the least able to take on new financial stresses is bad policy. If innovative changes to our health care system can work better for the most vulnerable, they can work better for everyone. Stakeholders, including providers, plans, payors and advocates, need to come together now and raise their voices loudly to protect the ACA and the Medicaid program itself. This fight is nothing less than a fight for health care justice, period.

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