“Healthcare Innovation, Policy, and Equity,” Professor Alyce Adams

Introduction and Disclosures

• The speaker has spent 25 years studying healthcare disparities in the United States, particularly for chronic conditions like cancer, despite people having health insurance (14s).
• Disparities in healthcare outcomes are seen in various communities, including rural indigenous communities, lower-income and lower-education communities, and African-Americans, who have higher death rates from breast cancer (30s).
• The speaker joined Stanford University three and a half years ago to collaborate with experts from different fields, such as epidemiologists, engineers, and sociologists, to understand and address healthcare disparities (1m9s).
• The leadership at Stanford is committed to making the university a leader in Health Equity science, which is why the speaker is excited to be there (1m49s).
• The speaker is looking forward to a discussion rather than a lecture and encourages the audience to ask questions during the Q&A session (1m59s).
• The speaker acknowledges the land of the Ohlone people, who were the original inhabitants of the area and are partners in some of the research being discussed (2m29s).
• The speaker has no conflicts of interest but is funded by Stanford University and has grants from the National Cancer Institute (NCI) and other federally and non-federally funded research grants (2m38s).
• The speaker has a PhD, not an MD, and cannot answer medical questions, so the audience is advised to consult their doctors for medical advice (2m59s).

Cancer Overview and Impact

• The speaker will discuss the impact of cancer, innovation in cancer care, and the core of their research, which focuses on understanding why healthcare disparities persist despite innovation (3m23s).
• Cancer affects everyone, either directly or indirectly, and it's essential to work together to improve outcomes, as it's a condition that affects every single person, regardless of background or socioeconomic status (3m46s).
• Cancer is characterized by uncharacteristic growth of cells that spread to other parts of the body, which is not supposed to happen, as the body is normally supposed to regulate itself and prevent this from occurring (4m22s).
• Cancer is a growing condition in the United States, affecting many people globally, and it costs billions of dollars, with the estimated cancer cost in 2030 expected to be $233.4 billion in the US alone, representing a 34% increase from 2015 (4m54s).
• Developed nations with higher income and educational attainment tend to have more cancer cases, primarily because people in these countries are not dying from other causes, and they live longer, increasing their chances of developing cancer (5m34s).
• The US has the highest cancer mortality rate, with breast cancer, prostate cancer, lung cancer, and colorectal cancer being among the most common types of cancer, although other types, such as cervical cancer, are more prevalent in other countries (6m5s).

Innovations in Cancer Care and Disparities

• There have been dramatic changes in cancer treatment over the last 30 years, driven by advances in technology, political will, and increased funding, including the passage of the first cancer bill by President Nixon in 1971, which helped break down barriers and push forward research and development of treatments (6m52s).
• The Clinton administration reenacted a law in 1993 that aimed to continue progress in cancer research, which has led to important breakthroughs in understanding and treating cancer, pushing the field forward to think of cancer as a chronic disease and exploring ways to cure advanced diseases (7m55s).
• Stanford Medicine has been at the forefront of cancer research and innovation, with a history dating back to 1956 when Stanford scientists built the Western hemisphere's first linear accelerator to treat cancer (9m29s).
• Today, Stanford is developing uniquely innovative approaches to cancer care, including a first-in-the-country FDA-approved cell therapy for solid tumors, early drug development programs, and work to miniaturize proton therapy systems (9m51s).
• These innovations have had a huge impact on cancer outcomes, with dramatic improvements in survivorship since 1990, particularly in three primary areas: early detection, early intervention, and innovations in care (11m18s).
• Despite these improvements, disparities in outcomes persist, highlighting the need for continued innovation and efforts to address these disparities (12m22s).

Stanford Medicine's Commitment and Mission

• Stanford Medicine is committed to finding new ways to improve outcomes and deliver hope to those battling complex cancers, with a focus on equitable access and compassionate care (10m32s).
• The institution's mission is fueled by its patients, their loved ones, and the promise of a better tomorrow, inspiring biomedical innovation, compassionate care, and a commitment to equitable access (10m50s).

Persistent Disparities and Challenges

• Mortality rates among women vary by race and ethnicity, with black, American Indian, Alaskan Native, and Hispanic women having lower survivorship rates despite innovations in healthcare (12m32s).
• Disparities in healthcare outcomes persist even among insured populations, with a study at Kaiser Permanente finding that American Indian and Alaskan Native patients were more likely to die from cancer despite equal access to care (13m10s).
• Patients with the greatest need and cancer burden often benefit last from innovations in care, with gaps in accessibility and outcomes persisting across different subgroups (13m35s).
• The adoption of new technologies, such as BRCA testing, has been slow, with improvements in access only starting to appear around 2010-2012, and gaps in accessibility persisting between metropolitan and non-metropolitan areas (13m47s).
• The cost of cancer treatment is rising, with predicted costs reaching $245 billion by 2030, and patients are feeling the financial burden, with 60% worrying about paying for treatment and over 30% taking on extra debt (15m7s).
• Financial toxicity, or the financial burden of cancer treatment, affects certain groups more than others, including racial and ethnic minorities, adolescents and young adults, low-income people, and those living in rural areas (15m47s).
• The financial burden of cancer treatment can have long-term effects on patients, particularly adolescents and young adults, affecting their ability to complete education and impacting their future trajectories (16m9s).
• Healthcare innovations can have a significant impact on individuals and their families, but their effectiveness is limited if people cannot afford them (16m35s).

Policy's Role and Impact

• Policy plays a crucial role in either aiding or hindering the impact of innovations on cancer survivorship, and it is essential to pay attention to policy to see these innovations translated into improvements and equity (17m2s).
• Coverage expansions, such as Medicare and Medicaid, have been shown to improve access to care, increase the uptake of clinically effective treatments, and reduce the cost burden on patients (17m17s).
• However, when the costs of care increase, insurance companies and health systems may pass on these costs to patients through co-pays or cut off supply through prior authorization (17m45s).
• Prior authorization is a process that requires healthcare providers to obtain approval from insurance companies before prescribing certain treatments or conducting specific tests, which can create hassle and reduce utilization (18m1s).
• Reducing co-pays can increase utilization of services in the short term, but this effect does not last for a long period (18m40s).
• Medicare Part D was created to provide coverage for prescription drugs, which were not previously covered under Medicare, in response to the rising costs of prescription drugs in the 1990s (19m12s).
• Medicare was initially created to help people with hospital costs, but over time, costs shifted away from hospitals, and prescription drugs became a significant expense (19m25s).
• Natural experiments are conducted to evaluate policies, such as the impact of Medicare Part D on prescription drug coverage, by comparing individuals with generous and not-so-generous coverage before and after the policy change (20m11s).
• The introduction of Medicare Part D led to an increase in the intensity of clinical use of clinically effective services, particularly among patients with comorbidities, and reduced disparities in utilization between black and white patients (21m9s).
• Patients who moved from less generous to more generous coverage were more likely to use beneficial services, indicating that making it easier for people to access services increases their utilization (21m42s).
• Prior authorization policies, such as the one implemented in Michigan, can have unintended consequences, such as disrupting therapy for individuals already using novel antidepressants, despite being exempt from the policy (22m14s).
• The prior authorization policy in Michigan reduced new use of novel therapies, but also reduced overall utilization of antidepressants, including those that were not subject to the policy (22m56s).
• The policy's impact on individuals with depression who were using antidepressants was evaluated by comparing the outcomes in Michigan to those in neighboring Indiana, which did not have the policy (22m42s).
• A policy was implemented that had unintended consequences, as it was lengthy and had many caveats in fine print, making it difficult for busy clinicians to determine patient eligibility, resulting in a decline in the use of a whole class of medications (23m34s).
• The policy's complexity led to clinicians stopping the prescription of certain medications altogether, rather than navigating the fine print to determine patient eligibility (24m6s).
• The decline in medication use was attributed to the policy's complexity and other similar studies showing comparable results (24m11s).

Community Benefits and Financial Assistance

• The federal government incentivized hospitals to provide community benefits in the 1960s, which led to hospitals offering free care to those in need, with the goal of maintaining their nonprofit status (24m28s).
• Hospitals decided to provide free care as their primary community benefit, which involves assessing patients' income and debt to determine eligibility for financial assistance (25m1s).
• Many hospitals, including Stanford, have medical financial assistance programs, which spend billions of dollars per year, but have rarely been evaluated (25m47s).
• An evaluation of Kaiser Permanente's medical financial assistance program in Northern California found that it successfully increased clinically effective services and improved follow-up rates for patients (26m14s).
• However, the program had limitations, including a lack of awareness among patients and clinicians, particularly those outside the hospital system, as well as questions about eligibility and uniformity across hospitals (26m38s).
• There is also criticism that hospitals are not spending enough on community benefits, which is a topic of ongoing debate (26m57s).

Recent Legislation and Policy Landscape

• Recent legislation at the state and national levels has focused on alleviating healthcare costs, such as the Cancer Patients Bill of Rights in California, which allows Medicaid patients with cancer to receive care at comprehensive cancer centers (27m21s).
• The Inflation Reduction Act addressed drug prices by enabling Medicare to negotiate with pharmaceutical companies and reducing co-pays for Medicare enrollees, with a cap on out-of-pocket expenses starting next year (27m49s).
• There is pressure on the Centers for Medicare and Medicaid Services (CMS) to address prior authorization, with some states using AI to reduce bureaucratic red tape, and CMS finalizing a rule on the issue earlier this year (28m35s).
• The policy landscape continues to evolve, with implications for shepherding innovations from the bench to the bedside and ensuring people have access to them (29m0s).

Addressing Inequities and Patient Engagement

• Core findings from research indicate that access is necessary but not sufficient for the uptake of novel therapies, affordability is critical, and equitable outcomes require deliberate efforts to enhance fairness (29m20s).
• To address persistent inequities, it is necessary to engage patients and communities in the design of cancer care innovations, take multidisciplinary approaches, and leverage novel methodologies to inform policy design (29m55s).
• Researchers are working with patients and clinicians to drive AI-enabled innovations in cancer care, such as building an algorithm to predict chemotherapy-induced neuropathy (30m23s).
• Partnerships are crucial in addressing healthcare innovation, policy, and equity, involving patients, modelers, sociologists, and other stakeholders to discuss access, policies, and application in the real world (30m43s).
• Kaiser Permanente is an example of a partner in engaging communities and discussing community benefit design and medical financial assistance to address the issue of most community benefit funds being spent in areas with less need (31m8s).
• A map illustrates that most community benefit funds are being spent in areas with less need, prompting the question of how to shift this and change it to a more equitable distribution (31m27s).
• To address this issue, patients, students, patient advocates, community advocates, health systems, and systems modelers are working together to identify the components of the system that need to change and predict the outcomes of these changes (31m45s).
• The goal is to create a partnership between communities and hospitals to distribute community benefit funds in a more equitable way (32m0s).
• Engaging communities in cancer science is also crucial, with communities driving priorities and researchers giving back to communities with their findings (32m9s).
• Equity can only be achieved by asking high-priority questions for communities and working with them to develop solutions (32m21s).

Cost of Treatment and Policy Considerations

• Cancer affects everyone, and working together is the only way to move forward in terms of equity (32m32s).
• A policy issue is the tendency to gravitate towards more expensive treatments, such as proton therapy for prostate cancer, despite similar outcomes to less expensive treatments (32m58s).
• The question arises whether public policy should create incentives for people to choose less expensive but equally productive treatments (33m45s).
• Addressing this issue requires educating consumers about the differences between treatments and the potential for cost savings while maintaining quality care (34m0s).
• Comparative effectiveness analyses are crucial in determining whether interventions are worthwhile, but there has been a lack of willingness to use these analyses for policy purposes, hindering the ability to make informed decisions about what constitutes a meaningful difference in healthcare outcomes (34m24s).
• Cost containment is necessary, but it's essential to understand whether cost containment measures, such as prior authorization, are doing what they're intended to do and whether they have unintended consequences (35m10s).
• Prior authorization can be an effective tool for shifting utilization, but it's currently a blunt instrument that needs refinement to be more like a scalpel and less like a hammer (35m46s).
• Policies from states and CMS are trying to refine prior authorization to make it more effective and less burdensome (36m5s).

AI in Healthcare and Bias

• The intersection of policy, regulations, and AI technology is a critical area, particularly in radiology and imaging, where there is a risk of bias and inequity in data sets and care (36m26s).
• To address these biases, policymakers and regulators need to encourage the development of AI technology while ensuring that patients, clinicians, and other stakeholders are involved in the conversation and policy development (36m52s).
• The human-centered AI group is working on this issue, and experts like Michelle Melo are leading the way in understanding the regulatory side of AI in healthcare (37m4s).
• A key step in addressing bias in AI is to ensure that diverse stakeholders, including patients and clinicians, are involved in the development of policies and technologies (37m26s).
• Development of AI algorithms in healthcare involves patients and clinicians in the room to ensure the right direction and identify potential pitfalls, with a focus on equity and ethics (37m49s).
• The use of AI in healthcare is widespread, but its adoption is slow and varied across health systems, with some applications being too challenging to use or not useful (38m31s).
• Risk management is an area where AI is being used extensively, but it also raises concerns about bias, and experts like Sher Rose are working to assess and address this bias (38m57s).
• Efforts are being made to improve data collection, such as Stanford's SOI initiative, to reduce bias and improve the quality of data used in AI algorithms (39m18s).
• The involvement of ethicists, patients, and clinicians is crucial in the development and implementation of AI in healthcare to ensure awareness of potential consequences (39m32s).

Positive Deviants and Community Interventions

• There is significant variation in healthcare outcomes across different states, counties, and cities, and researchers are studying "positive deviant" groups that are achieving better outcomes to understand their strategies (40m24s).
• Researchers are working with localities to formally test experiments and identify effective interventions, such as guaranteed income experiments and earned income tax experiments (40m40s).
• The concept of "positive deviant" work involves studying individual communities to understand what sets them apart and how they achieve better outcomes, with some researchers at Berkeley specializing in this area (41m2s).
• Looking to other disciplines, such as sociology, can provide valuable insights into healthcare issues, including understanding why certain groups may be doing better than expected despite having issues with income and education, and identifying the "secret sauce" behind their success (41m13s).

Funding and Research Focus

• The Opa H grant, a $150 million award from the Biden Administration, aims to eradicate cancer, but the amount may be considered small compared to the magnitude of the problem (42m5s).
• To accelerate progress in solving the problem of cancer, additional funding sources may be needed, and it is essential to activate more technology, talent, and interest in the field (42m34s).
• The major technological challenges preventing a viable and effective long-term solution to cancer may include a lack of focus on prevention and community interventions, as well as an overemphasis on biomedical approaches (42m47s).
• The Academy Health organization provided public comment on the ARPA-H legislation, suggesting that it focused too much on treatment and not enough on prevention, and that it was too biomedical in its approach (43m24s).
• Other funding sources, such as the Patient-Centered Outcomes Research Institute (PCORI), which was established under Obamacare, may provide alternative approaches to addressing healthcare issues, including a focus on patient-centered outcomes and community engagement (44m30s).
• A separate budget can provide an opportunity for people to discuss and work together on common goals without being heavily influenced by politics, as seen in the case of the Porori budget, which is separate from the NIH budget (44m52s).

Patient Empowerment and Advocacy

• Proton therapy is approximately five to 10 times more expensive than other treatments, but only offers a 2% difference in benefits, making it challenging for consumers and patients to make informed decisions (45m29s).
• To address this issue, patients and caregivers can be trained to become experts in working collaboratively with researchers and healthcare systems to ensure that research meets the needs and priorities of patients (46m2s).
• Organizations like the Porori ambassadors and PFCC Partners provide training programs for patients and caregivers to work collaboratively with healthcare systems and influence decision-making (46m11s).
• These programs aim to support patients who may not have the time, bandwidth, or ability to navigate the healthcare system on their own, especially when dealing with a new diagnosis (45m49s).
• Libby Hoy, the founder of PFCC Partners, is an example of a patient who has become an advocate for herself and others, and has developed expertise in working collaboratively with healthcare systems (46m45s).
• Organizations like the American Cancer Society also provide a wealth of information and support for patients, and can be a valuable resource for those navigating the healthcare system (48m19s).
• A cancer survivor is helping other patients navigate their cancer diagnosis and treatment, particularly in the first few months, and is training others to do the same as lay navigators for Black Ladies Advocating for Cancer Care in the East Bay (48m31s).
• The goal is to support communities in building capacity to help themselves, which is an exciting development in healthcare innovation (49m7s).

Precision Oncology and Clinical Trials

• Research is being conducted to develop individually oriented cancer treatments, also known as precision oncology, which involves tailoring treatment to a person's specific genetic profile (49m34s).
• Precision medicine aims to provide personalized treatment by analyzing an individual's genetics and tailoring their treatment accordingly, with a focus on advanced cancers where standard treatments have not been effective (49m59s).
• Clinical trials for precision medicine are becoming more efficient, with smaller groups of people being tested and evidence being found earlier, often at stage one or two, rather than at stage four (50m51s).
• The clinical trials process is becoming more variable, with more flexibility in terms of when treatments become available to patients (51m16s).
• The Stanford Cancer Institute is making significant advances in precision oncology, and their website is a resource for learning about specific types of cancer and the latest research (51m28s).