Healthcare

1. As a key to inclusive development, actively seek feedback from those you anticipate benefiting from your product or service in order to validate ideas.

• Engage with diverse and underrepresented groups throughout the product development process. 

• Recruit through non-traditional channels and influencers in the community - churches, community centers. Create in-house teams dedicated to identify community leaders & sites and facilitate interactions between the community and the researchers. 

• Partner with, rather than take from patients & participants during research. Too often, marginalized populations are over-studied and underserved. Engage community partners from inception through implementation and refinement, and ensure that they are compensated fairly for their contributions. 

• Acknowledge the power dynamics in these collaborative efforts, and ensure that community partner voices are valued as much as the other stakeholders. 

• Build a sense of ownership over the solutions developed within the community.

• Share learnings from research and testing with the communities that helped inform the research.

• Include diverse contexts of recruitment & care.

• Tailor digital health solutions to communication preferences and the digital context of patients (focus on mobile, not computers), considering the appropriate channel (SMS, email, phone, patient portals, etc.), the content and literacy level, and the right time (day of week, time of day).

• Evaluate digital solutions to understand who has access and who does not, e.g., based on digital literacy, connectivity, and language/cultural competency. Be explicit in naming the impacted groups and consider whether changes can be made to broaden access. 

• Scale research while remaining respectful of patients’ dignity and well-being.

• When evaluating new concepts, consider and account for the unintended consequences.

2. Stay on top of results: identify data related to your inclusion goals, consistently and reliably evaluate, and use data to inform product improvements.

• Evaluate any data used, especially in machine learning and artificial intelligence models, to consider who may not currently be represented and what bias may exist within algorithms. 

• Use health literacy and numeracy best practices when developing digital content, apps, etc., including plain language.

• Ensure that the teams building new tools represent diverse demographics, experiences, cultures, etc. 

• Train, empower, and support communities to build, use and refine the tools/their data themselves, so they do not have to depend on external parties to make decisions and control the tools created.

• Ensure accessibility best practices are met.

• Benchmark progress based on the outcome of those most affected by health and economic challenges.

3. Stay connected with your target audience as you promote, communicate, and educate about your product.

• Improve digital health literacy for patients and caregivers and providers, clinicians, and staff supporting patients, providing avenues for these groups to learn how to use digital tools. This could include teaching patients/caregivers how to schedule an appointment, use myChart, attend a virtual appointment, use a health app, etc., in trusted and relevant community locations. 

• Avoid technical jargon and provide clear definitions and explanations of how a tool works, what the data means, and how it can impact their day-to-day decision-making.

• Develop materials, apps, and tools in the languages appropriate and relevant to the communities served. Look beyond the current patient population to consider which languages may be reflected in the broader community that are not currently represented.

• Develop a variety of modes for accessing materials/information - digital vs. physical, etc.

• Ensure that patients have access to their data and how it is shared, including the ability to delete if/when they choose to. 

• Based on the data provided, design solutions that empower individuals and their families to feel confident in making their own health decisions. Practice transparency in sharing how the data is collected, used, and impacts treatment decisions and outcomes.

4. Hire, manage and measure to prioritize equity and inclusion.

For product teams:

• Ensure the teams providing virtual care or building digital healthcare products reflect the communities served (target users).

• Measure your digital health products and services’ impact on health outcomes and disparities (collect, analyze, and report data to include sociodemographic characteristics).

• Disaggregate data to understand how opportunities and challenges vary for different groups and advocate for a tailored solution.

• Establish organizational structures that enable employees to collaborate/consult with a representative group of end-users and community leaders along all stages of product development.

• Align funding decisions with a commitment to health equity.

• Ensure the core team is continuously trained in bias recognition, power dynamics, neurodiversity, and diverse communication styles.

For broader company culture:

• Create a culture of equity within the organization, embedding equity into the mission and purpose and team goals and performance incentives.

• Align team incentives and benefits with goals for digital health equity.

• Align funding decisions with a commitment to health equity.

• Set expectations amongst the staff that engaging in activities to promote health equity is encouraged. Track their equity efforts and progress in performance evaluations and ongoing training. 

• Educate all teams on the barriers patients face in accessing health care, public health services, and other opportunities to better health outcomes. 

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Background

Inclusion for health equity

Underserved or displaced communities are often at a disadvantage when it comes to healthcare. The lack of economic and material resources (stable employment and transportation), Social factors (religious, cultural beliefs, language barriers), and access to digital resources (phones and broadband internet). Individually, these factors can have large impacts on an individual’s health outcomes, but together they can significantly impact health, wellbeing, and life expectancy.  

These health disparities have far-reaching impacts, and digital health can play a significant role in reducing inequalities. However, ensuring an equitable experience requires intentionally including these historically underrepresented communities throughout all stages of product development. Inclusion results in improved quality of care and better health outcomes and can create new revenue opportunities for health organizations.

Intended Audience

The intended audience for this document is organizations that deliver care virtually or rely on digital tools for clinical care, disease management, communication, etc., within a health care context to improve the health of patients and communities.

This includes providers, clinics, hospitals, health systems, insurance providers, employers, health innovators, biotech, pharmaceutical companies, and other health organizations. In particular, it is intended to be a helpful tool for decision-makers & leaders at these organizations regarding new product/service development and refinement. 

Goals of these principles

• Build a set of actionable inclusion principles applicable to the conception, development, testing, and refinement of digital health technologies and the organizations that build or use them. 

• Create principles that stakeholders can advocate for at different levels of the organization and different parts of the design/product development process. 

• Connect the community to resources (tools, best practices, case studies, etc.) to put these principles into practice, gather feedback and continue to refine them.

• Improve the overall health of individuals and communities by reducing health disparities that exist today.

Organizational Requirements

Inclusivity is a hot topic. It drives sales, increases customer loyalty, and raises brand awareness among previously under-engaged customer demographics. Inclusive design requires a dynamic team of individuals of varying educational and life experiences. But let’s be clear—this is not a trend and should be embedded and integral to any organization. Overall, companies are trying to incorporate diversity, equality, and inclusion. However, companies are often overwhelmed by the work it takes to do this well. They will face pushback if their messaging appears inauthentic or tone-deaf, lacking cultural awareness.

Audiences can easily establish when diversity is done for ‘show’ compared to a genuine interest in serving a customer base. For example, Procter & Gamble’s Accessibility Lead Sam Latif is responsible for creating tactile features of Herbal Essences Shampoo and conditioner bottles. For visually impaired customers, these adjustments to their packaging can help consumers feel recognized, which creates an affinity towards the brand. Latif has been visually impaired since early childhood, and his lived experience is invaluable. 

When companies lead with a bold statement around DEI, the message often comes up to high levels of scrutiny; even if companies act with the best intentions, many can find fault. Organizations must live up to their external statements about DEI and commit to a journey, moving from intent to impact and learning along the way.

Barriers to Inclusive Practices

There are a variety of systemic barriers to implementing equitable design and development principles within the healthcare industry. Acknowledgment and awareness of how these educational and foundational issues can impact the success of equitable product development is crucial for improvement. 

• The economic incentives within the healthcare sector are often a barrier due to a focus on acquiring and maintaining patients with employer-sponsored health plans to boost revenue. This is especially applicable in countries that do not have broad government-sponsored healthcare coverage, such as the USA. 

• As technology advances, artificial intelligence (AI) and machine learning (ML) capabilities impact how products contribute to equity within a healthcare context. These models may inadvertently compound bias and existing inequities embedded within the datasets used to build them. Bias can show up at different points of the process - from study design to data collection, entry & management, to model choice and dissemination of the results. Building teams with diverse backgrounds and expertise, and encouraging critical thinking around unintended consequences, and closely examining the visible and invisible data can help teams identify and tackle these biases earlier on in the process. Engage community members in data collection and interpretation.

• Neurodiversity is often not recognized within product design and development in healthcare. Neurodiversity includes differences in individual brain functionality and human traits, including conditions like ADHD, dyslexia, social anxiety disorders, autism, and more.

• People are hesitant to engage in healthcare solutions without trust. The process of building trust with individuals and communities to impact health and achieve equity is incredibly important. Community members and community health workers can be especially impactful in bridging reciprocal and supporting relationships with underrepresented and underserved communities. It is important to build a relationship that goes beyond a single project. 

• Cultural competency and language barriers can be challenging to overcome within a digital context, and their importance is often overlooked/underplayed while designing new products and services.

• While most people have some access to technology, low literacy, and digital literacy levels can impact an individual’s ability to utilize technology to access and understand healthcare resources and information. To use digital health care services usually requires access to the internet, computers, or mobile phones.

• Implicit bias can adversely impact the development of new products and, consequently, the patients’ experience using them. 

• Racial bias and inequality, both direct and indirect, have a long history in medicine and healthcare. Healthcare organizations must actively work to identify and acknowledge past discrimination and inequities and work collaboratively with affected communities to prevent racism and discrimination in current and future policies and practices.

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