Improving the Cancer Patient Experience, Representation at the Policy Level

KirchAt the ACCC Annual Meeting and Cancer Center Business Summit (March 4-6, 2020; Washington, DC), Journal of Clinical Pathways spoke with Rebecca Kirch, JD, executive vice president, Healthcare Quality and Value, National Patient Advocate Foundation (NPAF; Washington, DC) about the latest efforts of the Foundation as well as components of the ACCC tiered matrix of services that are specific to improving the patient experience.

To begin, I know you and your team keep a watchful eye and are very active on Capitol Hill. What are some of the advocacy initiatives that have your attention at the current moment?

Mrs Kirch: The big prize we have our eye on is educating Capitol Hill about the plight of patients in terms of their financial circumstances. This effort is a way for us to harken back to our roots.

NPAF just released our new policy principles for 2020. We update them every year and they go through a board approval process. In the first year of my current role, we added integration of palliative care, psychosocial support, and rehabilitation to the policy principles. In my second year, we added new principles around caregiving. This year, I am particularly proud because we have gotten back to the very foundation of Patient Advocate Foundation; the policy principles include supporting financial and social needs navigation.

We wanted to develop new principles that will help socialize the difficulty that patients and families experience with regard to financial toxicity as well as the value of navigation services as a helpful solution. We hope to standardize these services so that everybody understands them as an important aspect of quality care aligned with specific accountability metrics that can ultimately lead to payment reform. In a nutshell for financial and social needs navigation, we are looking at a strategic policy development trajectory to socialize, standardize, and monetize these services over the next months and years. It will take some time to lay that foundation.

Can you describe feedback of these updated policy principles – both internally and on Capitol Hill?

Mrs Kirch: We have received great enthusiasm internally, but are only just starting to bring them to Capitol Hill. The Senate Finance committee is a new frontier for us to interact with in this way. Typically, patient advocacy organizations (including NPAF) have focused advocacy efforts on authorizing proposals with the Senate Health, Education, Labor and Pensions (HELP) Committee. In recent years, less activity and relationship building has occurred between us and the Finance Committees.

However, payment reform is within the jurisdiction of the Finance Committee and is dependent on the knowledge of Committee staff. We aim to share with those staff members that “financial toxicity” has progressed far past being a buzzword and into a realistic dilemma for many patients with cancer and other complex health conditions. Financial toxicity happens to just about every patient – not just the uninsured or underinsured. Nearly everyone has to make large financial trade‑offs and difficult decisions when confronted with disease diagnosis and ongoing care.

We built policy principles that emphasize the importance of naming the problem as well as identifying solutions. Namely, we offer ways of guiding patients and caregivers to available resources and avoiding waste so that programs like Medicaid and other safety net services are used as they were intended.

So much of the administration’s policy emphasis is on restricting program eligibility instead of improving screening for needed services and expanding eligibility criteria. We want to flip that trend and educate policy makers and stakeholders about the vital role that safety net programs play in improving health outcomes, quality of life, and the bottom line. Helping staff understand how assessing patients and families for their unmet financial and social needs and guiding them to available community programs, safety net services, and other resources can achieve better outcomes will be a central core of our near term advocacy action.

In light of this being an election year, how has the current political landscape of this country either shed a light or stayed away from cancer patient advocacy and interests? How do you project the coming election results and 1-2 years in the future to change the attitude or importance placed on patient interests?

Mrs Kirch: I think US politicians will have no choice but to listen to patients because public demand for person-centered care is building. Organizations like NPAF help amplify patient voices and give them the scaffolding they need to be influential in showing stakeholders the importance of treating the person beyond the disease. I have always believed that public demand will change policy and practice faster than any regulatory tweak, so our efforts will be putting this belief to the test.

There is quite a bit of momentum behind person‑centered care and large, coordinated advocacy efforts promoting this approach across the country. It is only a matter of time before person-centered care becomes a priority from a national policy perspective.

Shifting gears to the ACCC tiered matrix of services that community practices can adopt as a result of the ACCC 2019 survey, how do you expect these services to elevate patient care and the patient experience? What are some of the facets of the matrix that are specifically targeting patients?

Mrs Kirch: My emphasis on the ACCC conference panel discussion regarding this matrix was on quality of life, palliative care, financial navigation, and patient navigation. We also discussed survivorship care planning and clinical trials.

Among all of those services, oncology practices are challenged with how to pay for them. The discussion always comes back to reimbursement. While it is important to consider reimbursement, all of these services are no longer simply luxuries, but rather essentials. Frankly speaking, we do not have the payment system or clinical education and training to reflect that these services are ingrained across interdisciplinary teams.

The panel focused on this tension, the opportunities and challenges, and how we might start to think about system-wide solutions that can help support practices in building better, more comprehensive, and coordinated quality care.

Were there any reimbursement solutions for these services discussed by the panel?

Mrs Kirch: The main solution involved bundling of services and payment in a value‑based way instead of fee‑for‑service. However, it may be short‑sighted to think about reimbursement without considering the accountability metrics and the measures that we associate with payment reform. Some of the new measures (eg, patient-reported outcomes) need to be part of the conversation so that we can measure quality from the patient perspective, rather than focusing exclusively on making sure practices meet their bottom lines.

There is value for oncology practices to think about messaging that emphasizes opportunity to improve the quality and lived experience for patients throughout their journey – from diagnosis to treatment and long‑term survivorship or end of life. There are many steps along the way where service lines (eg, rehabilitation) can help with functional impairment. We need to think about financial navigation to help with financial impairment. This cannot always be handled by the practice, but identifying point people that can steer patients and families to needed supportive services is an area where there is currently no reimbursement. Similar to care coordination, financial navigation has yet to be prioritized within accountability measures that would then be tied to payment reform under MACRA or any other sort of new framework from CMS.

This is where the role of NPAF comes into play – we help to lead the way of socializing the needs from the perspective of patients and families. In other words, let’s do a better job of prioritizing the customer experience. That is how hotels are built. That is how Disney functions. Only in health care do we do the opposite.

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