Advancing inclusive care pathways for people with disabilities

Around the world, the prevalence of diseases is substantially higher for the 1.3 billion people (16 percent of the population) with disabilities.¹According to Article 1 of the United Nations Convention on the Rights of Persons with Disabilities, adopted in 2006: “Persons with disabilities include those who have long-term physical, mental, intellectual, or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”; “Disability, World Health Organization, March 7, 2023. For example, among adults with disabilities living in the United States, 10.4 percent have heart disease, compared with 3.7 percent of those without a disability.²“Disability impacts all of us,” US Centers for Disease Control and Prevention, updated July 2024. The disparity in communicable diseases is similarly stark; globally, adults with disabilities are twice as likely to have HIV/AIDS,³Hannah Kuper and Phyllis Heydt, Access to health services for 1 billion people with disabilities, Missing Billion Initiative, July 2019. and children in sub-Saharan Africa with a disability are more likely to experience acute respiratory infections, diarrhea, and fever.⁴Sara Rotenberg, Calum Davey, and Emily McFadden, “Association between disability status and health care utilisation for common childhood illnesses in 10 countries in sub-Saharan Africa: a cross-sectional study in the Multiple Indicator Cluster Survey,” eClinicalMedicine, March 2023, Volume 57, Number 101870; Sara Rotenberg et al., “HIV knowledge and access to testing for people with and without disabilities in low- and middle-income countries: evidence from 37 Multiple Indicator Cluster Surveys,” Journal of the International AIDS Society, April 2024, Volume 72, Number 4.

The aggregate effect of these health inequities on human life is shocking: globally, people with disabilities have a mortality rate that is 2.24 times higher than those without disabilities,⁵Hannah Kuper et al., “The association between disability and mortality: a mixed-methods study,” The Lancet Public Health, May 2024, Volume 9, Number 5. with a mean life expectancy 13.8 years shorter.⁶Hannah Kuper et al., “The association between disability and mortality: a mixed-methods study,” The Lancet Public Health, May 2024, Volume 9, Number 5.

Although people with disabilities often have greater healthcare needs, they also experience more and higher barriers to care, often rooted in failures through the health system. For example, people with disabilities are 2.5 times more likely to report skipping or delaying care because of cost.⁷Gloria L. Krahn et al., “Persons with disabilities as an unrecognized health disparity population,” American Journal of Public Health, April 2015, Volume 105, Supplement 2. Additionally, they are more than twice as likely to have difficulty securing transportation to a health facility, and when they do arrive, they often encounter inaccessible facilities or healthcare workers with inadequate skills or flexibility to provide quality care.⁸Gloria L. Krahn et al., “Persons with disabilities as an unrecognized health disparity population,” American Journal of Public Health, April 2015, Volume 105, Supplement 2. Moreover, people with disabilities are 2.5 times more likely to not receive care because it is unaffordable.⁹Gloria L. Krahn et al., “Persons with disabilities as an unrecognized health disparity population,” American Journal of Public Health, April 2015, Volume 105, Supplement 2. Finally, weak laws and policies against discrimination, limited representation of persons with disabilities in health sector decision making, and poor data and evidence pose additional barriers to receiving holistic and accessible care.

The McKinsey Health Institute (MHI) is working with the Missing Billion Initiative to address health system challenges and close gaps in health equity (see sidebar, “About the Missing Billion Initiative and the McKinsey Health Institute”).¹⁰The World Health Organization defines health equity as “the absence of unfair and avoidable or remediable differences in health among population groups defined socially, economically, demographically, or geographically.” For more, see “Health equity,” WHO, accessed July 7, 2024. In 2022, the Missing Billion put forward a framework for disability-inclusive health systems with examples of actions and good practices that stakeholders could implement across health systems.¹¹Céleste Danos et al., Reimagining health systems that expect, accept and connect 1 billion people with disabilities, Missing Billion Initiative, September 2022. In 2023, the Missing Billion and MHI explored how a data equity gap limits the ability of health systems to meet the needs of people with disabilities and outlined actions stakeholders could take with respect to data collection and usage.¹²Ahmed Osman and Sunny Sun, “The missing billion: Lack of disability data impedes healthcare equity,” McKinsey, September 12, 2023.

While efforts to remove systemwide barriers must increase, it is also important to identify and address specific challenges faced by people with disabilities along the patient care pathways of specific health conditions.¹³For more, see “Using care pathways to improve health systems,” McKinsey Health International, 2011, Number 11.

This article examines inequities at each stage of the patient care pathway for people with disabilities, using examples of a noncommunicable disease and a communicable disease. It offers two personas, a patient with cervical cancer and a patient with HIV, to provide insights into disease-specific inequities and potential interventions to overcome them.¹⁴The criteria for selecting cervical cancer and HIV for study include available data, relevance to diverse groups of patients, and their representation of noncommunicable and communicable diseases, respectively. Finally, it offers a three-step approach to reduce health inequities across disease types as well as an approach to analyzing care pathways to inform national disease program designs.

Analyzing patient care pathways reveals the stark compounding effects of disability-related barriers to quality healthcare that patients experience at every step and identifies opportunities to implement changes (Exhibit 1).

1

Image description: Table depicting typical experiences of people with disabilities in four stages.

1: When perceiving a need and deciding to seek healthcare, they typically experience uncertainty about symptoms and whether to seek care, concerns about the quality and accessibility of care, and dependence on a caregiver to access care.

2: When accessing healthcare services for diagnosis and consultation, they typically experience difficulties using transport due to lack of accessibility or affordability, facilities not being fully accessible or making accommodations (e.g., ramps, accessible toilets, accessible information points), and healthcare workers not trained to provide preventive care.

3: When undergoing treatment and being monitored, people with disabilities typically experience not being treated comprehensively or with respect by staff, not being able to access treatment due to a lack of accommodations, and disability-related assumptions leading to no diagnosis or treatment.

4: For long-term management and follow-up care, they typically experience confusion about what to do after the visit, inaccessible follow-up instructions and education materials, and delayed follow-up care or appointments. End of image description.

Exploring inequities in patients with cervical cancer

The care pathway for cervical cancer illustrates both the barriers that women with disabilities face related to sexual and reproductive health and the barriers that people with disabilities often face in cancer care (Exhibit 2).

Prevention, screening, and diagnosis. Parents of children with disabilities may assume people with disabilities are asexual or not sexually active,¹⁵Shaniff Esmail et al., “Attitudes and perceptions towards disability and sexuality,” Disability and Rehabilitation, 2010, Volume 32, Number 14. which could impede care quality. For example, the human papillomavirus (HPV) vaccination has proven highly effective at reducing the incidence of advanced-state disease, but vaccination uptake is substantially lower in schools specifically serving students with disabilities than in mainstream schools.¹⁶Jenny O’Neill, “Vaccination in people with disability: a review,” Human Vaccines & Immunotherapeutics, 2020, Volume 16, Number 1.

Likewise, cancer research organizations recommend a highly effective screening for cervical cancer every five years for women aged 25 through 65.¹⁷“The HPV vaccine,” Cancer Research UK, reviewed on January 25, 2024; “ACS’s updated cervical cancer screening guidelines explained,” National Cancer Institute, September 18, 2020. Yet a meta-analysis of 22 studies showed that women with disabilities are 35 percent less likely to be screened for cervical cancer.¹⁸Hannah Kuper et al., “Principles for service delivery: Best practices for cervical screening for women with disabilities,” International Journal of Women’s Health, 2024, Volume 16.

Treatment and follow-up care. Cervical cancer patients with disabilities are less likely to receive treatment, including chemotherapy and surgery, for a variety of reasons.¹⁹Overall mortality risk was about 1.4x higher for patients with disabilities. Jin Young Choi et al., “Disparities in the diagnosis, treatment, and survival rate of cervical cancer among women with and without disabilities,” Cancer Control, 2021, Volume 28. Clinicians may limit treatments with high toxicity for people with worse baseline health, or they may lack awareness or exhibit bias when treating patients with disabilities. Additionally, cancer is detected at later stages, on average, for people with disabilities, and hospital rooms and equipment may be inaccessible.²⁰Overall mortality risk was about 1.4x higher for patients with disabilities. Jin Young Choi et al., “Disparities in the diagnosis, treatment, and survival rate of cervical cancer among women with and without disabilities,” Cancer Control, 2021, Volume 28.

Furthermore, when developing treatment plans for various cancer types, physicians often use standardized scales (for example, the Karnofsky Performance Scale) to assess patients’ ability to tolerate cancer treatment; however, these scales are not designed with disabilities in mind—which some physicians are publicly criticizing as a problem²¹Elizabeth Cooney, “Doctors call out ableism in cancer care: ‘The biggest accommodation is attitude,’” STAT, December 13, 2023.—resulting in the following challenges:

• Certain impairments (such as mobility) artificially sway results to underestimate patients’ ability to withstand chemotherapy treatment, resulting in a lower likelihood chemotherapy will be suggested.²²Sean R. Smith, Cheri Blauwet, and Thomas Peter Edward Wells, “Anti-ableist oncology care: ensuring equity for people with physical disabilities,” The Lancet Oncology, November 2023, Volume 24, Number 11.
• Language such as “requires occasional assistance” or “disabled” may lower the chances of being deemed a good candidate for more-aggressive care plans for people with a wide variety of impairments.²³Sean R. Smith, Cheri Blauwet, and Thomas Peter Edward Wells, “Anti-ableist oncology care: ensuring equity for people with physical disabilities,” The Lancet Oncology, November 2023, Volume 24, Number 11.

The bottom line: as a result of combined health inequities, women with disabilities who are diagnosed with cervical cancer are half as likely to complete a successful cervical cancer patient journey (Exhibit 3). This leads to a mortality risk that is 1.4 times higher for people with disabilities and a mortality risk that is 1.7 times higher for people with severe disabilities.²⁴Jin Young Choi et al., “Disparities in the diagnosis, treatment, and survival rate of cervical cancer among women with and without disabilities,” Cancer Control, 2021, Volume 28.

3

Image description: Two waterfall charts for a model of South Korean women with cervical cancer and with and without disabilities at each stage of cervical cancer coverage: having cervical cancer, unscreened, no treatment, unsuccessful treatment, and successful treatment. For women without disabilities (n = 13,582), 46% are unscreened for cervical cancer, 4% receive no treatment, 9% receive unsuccessful treatment, and 41% receive successful treatment. For women with disabilities (n = 3,185), 71% are unscreened for cervical cancer, 3% receive no treatment, 6% receive unsuccessful treatment, and 20% receive successful treatment. End of image description.

Examining health inequities in patients with HIV

Despite established health interventions, HIV is a chronic, infectious disease that leads to nearly one million deaths each year globally from AIDS.²⁵Hannah Ritchie and Max Roser, “HIV / AIDS,” Our World in Data, updated December 2023.

Social stigma remains a substantial barrier for patients in general to seek care, increasing their risk of contracting the disease and developing secondary disabilities. For people with disabilities, the risks are compounded (Exhibit 4). Because of abuse risks and correlation between poverty, exclusion, and disability, people with disabilities are often at higher risk for contracting HIV.²⁶Sara Rotenberg et al., “HIV knowledge and access to testing for people with and without disabilities in low- and middle-income countries: evidence from 37 Multiple Indicator Cluster Surveys,” Journal of the International AIDS Society, April 2024, Volume 72, Number 4. An estimated two-thirds of those with HIV have a mental health disorder, compared with 31 percent of persons without HIV.²⁷Kathy K. Byrd et al., “Improvements in retention in care and HIV viral suppression among persons with HIV and comorbid mental health conditions–Patient-centered HIV Care Model,” AIDS and Behavior, December 2020, Volume 24, Number 12. The World Health Organization’s recommendations to ensure access to HIV treatment for those with mental health, neurological, and substance use conditions lists a wide range of interventions, including helping health and HIV service providers have more knowledge and skills to identify, screen, and manage mental health conditions; and giving those with mental health conditions access and referrals to HIV prevention, testing, and treatment.²⁸Integration of mental health and HIV interventions: Key considerations, UNAIDS and World Health Organization, April 28, 2022.

Preventive care and prevention. Awareness of preventive methods—for example, clean-needle sharing, use of contraception, and pre-exposure prophylaxis medication²⁹Pre-exposure prophylaxis medication should be used only in emergencies and taken within 72 hours after possible exposure to HIV. For more, see “Preventing HIV with PEP,” US Centers for Disease Control and Prevention, January 25, 2024.—reduces the risk of contracting HIV before or after exposure. People with disabilities, however, typically have lower access to healthcare and less autonomy. At a global level, according to the United Nations, they are more vulnerable to sexual assault or abuse, are less likely to be enrolled in school and receive sexual or reproductive health education, and are often assumed to not be sexually active. Collectively, this puts those with disabilities at higher risk for HIV and AIDS.³⁰“Disability and HIV/AIDS,” United Nations, accessed September 13, 2024.

Testing and diagnosis. Testing at least once a year is recommended for individuals with certain risk factors for HIV.³¹Risk factors include, but are not limited to, being a male who has had sex with another male; having anal or vaginal sex with some who has had HIV; and sharing needles, syringes, or other drug injection equipment. For more, “Getting tested for HIV,” US Centers for Disease Control and Prevention, September 6, 2024. Because of a lack of awareness, people with disabilities are less likely to know where to go for testing or to have been tested before. Economic vulnerability, physical limitations, and stigma further impede patients from seeking testing.

Treatment. Antiretroviral therapy using a combination of daily medicines is a standard treatment for patients with HIV. Difficulty gaining access to information about HIV and traveling to treatment centers, combined with social stigma, often result in patients with disabilities delaying medication refills and checkups.

Monitoring and ongoing care. The chronic nature of HIV forces patients to experience fluctuating episodes of illness, wellness, and disability, which requires varying levels of care, adding a layer of complexity to the care of people with disabilities.³²Stephanie A. Nixon et al., “The increasing chronicity of HIV in sub-Saharan Africa: Re-thinking "HIV as a long-wave event" in the era of widespread access to ART,” Global Health, October 2011, Volume 7, Number 41. Service delivery models for disability-related issues are either limited or nonexistent in many low- and middle-income countries, where the prevalence of HIV is highest but resources are less available.

A call to action

Healthcare stakeholders can take specific actions to reduce or eliminate health inequities across disease areas.

Analyze care pathways as part of the design phase to identify specific barriers. Government entities, funders, and implementers of disease programs can adopt a structured approach to identifying gaps and intended outcomes at each stage of care through available quantitative data and new qualitative data gathered through consultations with experts and people with lived experiences.

They can also understand the specific barriers facing people with disabilities throughout the care journey. Healthcare worker training programs can be designed with a multi-lens approach toward general disability awareness and knowledge of pathways for specific diseases. It is essential that healthcare workers feel empowered to provide high-quality consultations and care for people with impairments, with nuanced understanding of disabilities and their impact on care pathways.

Additionally, stakeholders can ensure healthcare facilities and equipment are accessible and can provide access to assistive technologies, rehabilitation, and mental health and social support services.

Three steps for developing an insightful, equitable care pathway

This exercise is designed to help stakeholders develop disease-specific care pathways, considering the needs of people with disabilities. Developing representative care pathways is an effective way to understand health inequities and identify opportunities for effective interventions.

• Government agencies could complete this exercise when developing national programs to identify system-based gaps and develop targeted interventions.
• Health systems could use it to understand their patients’ needs to ensure accessibility of care (transport, facility design, follow-up, treatment, and intervention provision).
• For funders, completing this exercise could help identify health inequities to inform investment portfolio decisions or fund research.
• Care delivery organizations could use this exercise to understand their patients’ struggles, build knowledge and awareness among healthcare workers of the additional burden of disease for people with disabilities, and promote inclusion.

Step 1: Identify pathway components and gather data

This involves stakeholders having a clear understanding of the components and drivers of the care pathway experience and the root causes of the inequities faced by people with disabilities, backed by comprehensive and representative data.

Identify pathway components. Break down the components of the pathway (for example, awareness and prevention, screening and diagnosis, treatment, and follow-up and ongoing care) and identify stakeholders for each one. These components will vary depending on the disease care pathway.¹Céleste Danos et al., Reimagining health systems that expect, accept and connect 1 billion people with disabilities, Missing Billion Initiative, September 2022.

Gather quantitative and qualitative data. Quantitative data will depend on the specific disease pathway; pathway components can guide the search for data (exhibit). Examples of sources of quantitative data are electronic health records, the Global Health Data Exchange, UNICEF Multiple Indicator Cluster Surveys, and The Demographic and Health Surveys (DHS) Program. Stakeholders can compare data in the general population and in people with disabilities using filters such as gender, geographic location, socioeconomic status, and other disease-relevant demographics.

Image description: Table of questions that stakeholders in the care pathway experience can ask to better consider the needs of people with disabilities.

• For awareness and prevention, key questions include: are people with disabilities at higher risk? Are they facing barriers to information, awareness, or prevention? And are there qualitative or quantitative data on this issue?
• For screening and diagnosis, questions include: What is the main screening and diagnosis approach, and what are the difficulties people with disabilities may face? And are there data showing a difference in uptake by disability status?
• For treatment, questions include: Are there data on the uptake of treatment stratified by disability? What are the main barriers people with disabilities face when trying to access treatment? And are there qualitative and quantitative data on this issue?
• For follow-up and ongoing care, question include: Are there data on successful completion of treatment? What are the main barriers people with disabilities face when trying to access ongoing care? And are there qualitative and quantitative data on this issue?

End of image description.

Obtaining qualitative data from people with disabilities may be challenging and require ethical approval. One potential option would be to partner with people with disabilities by creating a council of organizations of persons with disabilities and conducting focus groups and interviews with patients, caregivers, healthcare workers, and other stakeholders, ensuring focus groups are representative of gender, age, multiple disability types, socioeconomic status, and geographies.

Step 2: Create personas to illustrate diversity within each care pathway inequity

Using the data collected, stakeholders can create two or three diverse personas, providing insights into the types of barriers faced by different people with disabilities. They can then develop real-life potential scenarios to illuminate the challenges that come with disabilities faced by the personas. Key persona characteristics to develop could include disability type (such as hearing, vision, or cognitive); demographics such as gender, age, geography, employment status, and education level; level of independence and available support systems; and financial status (such as ability to cover healthcare expenses). Stakeholders can use personas as a tool to apply data in real-life situations, but to avoid skewing actions, they are advised not to use personas as a tool for planning services.

Step 3: Build the pathways and derive insights

This step will yield specific insights and recommendations, with defined stakeholder ownership for each.

Build current persona pathways. Using the gathered quantitative and qualitative data and a patient-centered approach, stakeholders can develop pathways based on the personas’ experiences to identify challenges and pain points across the entire care pathway.

Build ideal persona pathways. Stakeholders can then apply the Missing Billion inclusive health systems framework to draw up the best-in-class patient pathway for each persona²The Missing Billion Initiative framework for inclusive health services from Reimagining health systems that expect, accept and connect 1 billion people with disabilities, September 2022. as well as optimize system drivers (for example, country laws and policies, healthcare worker knowledge, and disability inclusion budgets) and the roles of stakeholders across all key moments in the care pathway.

Compare pathways to derive insights and recommendations. By comparing the two pathways, stakeholders can identify gaps and derive holistic insights that inform holistic and disease-specific recommendations for stakeholder initiatives.

Education, raising awareness, and tackling stigma are likely to be important levers for improving uptake of services. HIV programs also are more likely to need to account for secondary impairments that could create barriers to completing treatment. (See sidebar, “Three steps for developing an insightful, equitable care pathway.”)

Enable system-level changes as foundations for inclusive care pathways. Governments can make system-level changes to healthcare that set the foundation for tailored, inclusive programs by, for example, including people with disabilities in national health sector plans and national disease plans.

Consider care pathways as an important tool for targeted advocacy. Civil societies and patient advocacy groups for specific disease programs can use care pathways to build a holistic picture of compounding inequities and gaps at every stage for people with disabilities. This can enable effective convening of relevant stakeholders and efficient use of available resources to close the equity gap.