Building Equity Into Value Assessments Requires Changing the Rules of the Game


Equity has to be made front and center in conversations about value assessment, otherwise all stakeholders will continue waiting for someone else to make the first move, said one panelist at the Value-Based Insurance Design Summit.

Throughout the day, panelists at the Value-Based Insurance Design (V-BID) Summit raised the issue of value and how it squares with equity. In the final panel of the day, speakers specifically discussed how to incorporate equity into value assessments. The summit was hosted by the University of Michigan’s V-BID Center.

The panelists included:

  • Jennifer Bright, MPA, chief engagement and strategy officer at Innovation and Value Initiative (IVI)
  • Nelly Ganesan, executive director of health equity at Morgan Health
  • Charlene Son Rigby, CEO of Global Genes

Similar to previous panels in the day, Bright acknowledged that her organization really began its journey during the COVID-19 pandemic when cost, inequities, and the disproportionate impact of the virus on communities of color kept bubbling up as challenges.

IVI created a multistakeholder project, which included Bright’s co-panelists Ganesan and Son Rigby. The purpose of the project was to understand how health technology assessment (HTA) can be used to understand questions of equity in decision-making about value, as well as where there are gaps.

“There is an enormous amount of debate and, frankly, a lack of consensus about the limitations of health technology assessment: where we've got methods that work and where we don't,” Bright said. “We often hear that our data are what limits us.”

The result is that patient communities are burdened to develop data about their lived experiences and the impact on their families, but that data are not always incorporated into health economics approaches and cost-effectiveness analyses.

IVI identified 4 domains where equity and HTA intersect:

  1. Power, people, and processes: emphasizing the patient perspective and engaging with communities to understand the burdens and economic impacts they are confronting
  2. Communications and use: how results and limitations of HTA are communicated to affected communities and decision makers
  3. Data, inputs, and infrastructure: identifying representative sources of data that can be used to answer questions or identify where there are blind spots in decision-making
  4. Methods: prioritizing practices and tools that elevate equity considerations

According to Bright, when talking about value assessment, the launch price of a drug, while important, is not the only cost that needs to be acknowledged. “There are also myriad other costs borne by patients and families that are a direct result of disparities in care,” she said.

At this point in time, more thought needs to be paid to the roles stakeholders play to make change happen without finger pointing, Bright said. Patients can’t be expected to take all the responsibility for generating good data.

“Fundamentally, I think the conversation needs to pivot to talking about accountability,” Bright said. “We have enormous resources and research funding and expectations of published literature and things like that. Until the rules of the game change and we start prioritizing questions that put equity at the front and center of this conversation about value, we're going to be arguing about who has to make the first move.”

Employers have been slower to take up HTA and integrate them into the work the employer does around health, but thinking of how to do that is a key goal of Ganesan’s job.

Morgan Health is a business unit at JP Morgan Chase that was created when the JP Morgan-Amazon-Berkshire venture Haven disbanded. According to Ganesan, when Morgan Health was set up, health equity was a foundational aspect of the course of work.

Morgan Health has just under 300,000 covered individuals. The benefit Morgan Health has is that it knows where everyone lives and what their occupations are, both of which affect health outcomes, as well as their claims, and all their health information of what they are being treated for. In addition, these covered lives are located in 8 geographies.

“We've been working with our carriers to better understand what our populations look like [in these area], but are there things that we can actually implement within those communities or work [we can do] with partners in those communities?” she noted.

For instance, informing employees of where providers are located if breast cancer screening rates are low in one area. In addition, when identifying vendors to work with, Morgan Health is also ensuring that they have language preferential documents tailored to the population.

When investing in new technologies, the company is looking closely at integrating equity into the investment. The solution should be promoting better use of care and better access to care for various populations, Ganesan explained.

One potentially overlooked area of inequity in health care is that only 5% of disorders have approved therapies, which means 95% have no approved therapies, and there is a great economic burden associated with the lack of treatment for these disorders, said Son Rigby.

Her own daughter has a rare, severe neurodevelopment disorder the includes seizures, fine and gross motor issues, and severe to profound intellectual disability. However, her daughter had an atypical presentation without the seizures, and it took 3 years for her daughter to receive her diagnosis, which is still much shorter than the diagnostic journey can be for others.

Estimated direct medical costs for rare diseases can range from $400 billion to $800 billion a year in the United States, alone, and the indirect medical and nonmedical costs total $1 trillion a year in the United States, she explained.

“This health care burden is really staggering in terms of the aggregate cost, and there are so many systemic access and equity issues,” Son Rigby said.

The good news is that there has been tremendous progress on the therapeutic front with novel therapies such as CRISPR, adeno-associated virus vectors, and more. These therapies are in various stages of preclinical development for hundreds of rare diseases and may possibly even address the root cause of some diseases. As a result, the landscape for rare disease treatment is expected to change dramatically over the course of a few years.

However, value assessments haven’t been at the forefront of rare disease treatments. Global Genes is driving multiple efforts from a health equity standpoint, including a multistakeholder forum to build awareness and advance the discussion around health equity.

In addition, there is a data collection program in progress for approximately a year and a half. “We're already collecting quality-of-life data across participants, and I'm really hopeful that this will help us to start creating baseline data for these very understudied disorders as inputs into value assessment,” Son Rigby said.

Finally, there is a pilot kicking off to develop a community-based model that will identify, support, and engage individuals and families impacted by rare disease. The goal is to enhance diversity and equity in care and research. The FDA is pushing for more diversity in clinical trials, but in order to get there, the profound trust issues in some communities, particularly underserved and marginalized communities, need to be addressed first, she pointed out.

The purpose of the pilot is to meet patients where they are by partnering with community-based and faith-based organizations, as well as working with community health liaisons.

“You can really think of it as layers,” Son Rigby said. “We’re building trust, then we can start to think about education, then we can start to think about engagement, and hopefully, participation….Being able to build equity in value assessment, to do that we need to make sure that we have truly diverse representation of all stakeholders at the table.”

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