Health Equity Imperative: Engage patient voices

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Community Strengths

7 min readJan 31, 2021

What is the opportunity we are trying to solve for?

When we listen deeply to patients, caregivers, and other stakeholders, we are better able to understand their experiences in the journey of care and co-design innovative solutions that improve the healthcare ecosystem.

The following three key drivers provide a compelling case for better understanding the patient journey and engaging patients, caregivers, and other stakeholders in designing innovative solutions in order to create value and continue to transform the healthcare ecosystem.

Key Drivers to Transform the Healthcare Ecosystem

Empowerment: Engaging patient voice helps shift the health care ecosystem to be more patient-centered — informed by patient experience and values.

Patient empowerment is a process through which people gain greater control over decisions and actions affecting their own health. In this process patients are supported to take co-responsibility with health partners (providers, pharma, payers) to manage their health, increasing value through enhanced medical outcomes and lower costs. At the very core of patient empowerment is seeing patients and caregivers not as passive actors but rather active partners in creating solutions helping to promote innovation. The movement towards more patient-centered care increases patient empowerment and forges a stronger partnership by considering patient preferences, needs, values, and goals.

Equity: Significant disparities in health equity continue to exist. Moves over the last several decades, such as value-based care, have had a limited impact on racial health disparities.

Black Americans in particular are more likely than White Americans to suffer from cardiovascular disease, maternal mortality, and poor cancer outcomes. Moreover, Black patients are more likely than White patients to receive care at under-resourced safety-net hospitals that consistently score lower on patient experience compared to non-safety-net hospitals (Ojo, Erfani & Shah 2020).

Over the next 20 years, the US will become more diverse and older. The United States will likely be majority people of color by 2045. In addition, the share of the population who is at least age 65 will increase from about 1 in 7 today to about 1 in 5 in 2030. The number of people who are at least 85 years old is expected to increase two-fold. As a result, there is a widening racial generation gap between the nation’s youngest and oldest people. In 2017, 22% of people over 65 and 49% of youth were people of color.

Let’s take a look at how disparities are showing up related to age and race using cervical cancer as a case study.

There are age, stage, and race disparities in cervical cancer incidence and death rates.
The incidence rate among US Hispanic women is nearly 50% higher than among non-Hispanic White women.
The incidence rate among Black women is 30% higher than non-Hispanic White women.

Death rates in Hispanic women during 2012–2016 were 26% higher than those in non-Hispanic White women.
Death rates in Black women during 2012–2016 were 75% higher than non-Hispanic White women.

In addition, certain racial/ethnic populations are under-represented in cancer treatment trials when compared with their percentages in the overall population of patients with cancer. Only 4% to 6% of trial participants are Black and 3% to 6% are Hispanic, despite representing 15% and 13% of all patients with cancer, respectively.

The Center for Information and Study on Clinical Research Participation (CISCRP) offers patient clinical trial journey workshops to “solicit important patient and/or caregiver insights and preferences over the course of a clinical trial.”

Value is an equation that reflects improving outcomes while lowering overall costs. This can be achieved through improving clinical efficacy and efficiencies while decreasing costs. But it also includes addressing the context of patients’ lives and ensuring positive patient experiences.

A patient-centered approach is responsive to these key market drivers including increasing patient empowerment, addressing disparities, and creating value.

Patient centricity focuses on meeting critical unmet needs as defined by patients. This helps to bridge opportunities to improve navigation of the health care system. It also addresses gaps in access and supports readiness for more effective treatments. Better understanding the patient journey integrates patient, caregiver, and other stakeholder priorities into clinical research, outreach, care delivery, and support through access and other holistic programs. It helps to create strategies that align across the healthcare continuum and reduces silos to create more value in the healthcare ecosystem.

Insights and Co-Design

There are opportunities to use co-design to gain deeper and more actionable insights in order to support increasing empowerment, equity, and value in the healthcare ecosystem.

Different forms of research provide increasing levels of insights, participation, and innovation.

The following tools along the design thinking process help to create new possibilities (and reduce risk with growth and innovation).

Source: Designing for Growth

Let’s take a look at patient journey mapping as an example. Engaging in patient journey co-design approaches helps to reconceptualize the role of the patient, caregivers, and other stakeholders throughout the entire healthcare ecosystem.

Patient journeys help us to gain a deeper understanding of the human behavior that influences how we interact with the health care system. It also helps to frame data into actionable insights through identifying “aha” moments, enhancing the effective use of data. Patient journeys also support the co-design of solutions with rather than for patients, caregivers, and other stakeholders.

Let’s return to our cervical cancer case study. Imagine the following hypothetical scenario: A pharma company with a drug for advanced cervical cancer wanted to address disparities in incidence and death rates. So, they engaged the team to help them better understand the patient journey in order to develop innovative solutions in their commercial and market access strategies. The team knew it was critical to have patients as active partners in the process, so they formed a team with patients and rolled up their sleeves. The team first shaped a design challenge in partnership with patients: How might we work together with patients, providers, and payers to reduce disparities in cervical cancer incidence and death rates?

What might be possible if we engage focus on improving empowerment, equity, and value in our healthcare ecosystem? What would you change or add to this value proposition?

The following sources were used in writing this article and can be resources for further learning and discussions. Please share other resources you have found useful!

Health Equity Imperative: Engage patient voices

Insights and Co-Design

Written by Kristin Bodiford