Introduction to the Guide

Owned by Justin Obara
Last updated: Jul 19, 2021 by Vera Roberts
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Introduction

During the pandemic response and recovery, many health units have moved to offering services using virtual healthcare. While there are many opportunities with virtual healthcare, there are also risks that individuals and communities will become excluded in this shift in service delivery if it is not designed inclusively. This guide has two main purposes: 1) to identify the virtual healthcare needs of Canadians and 2) to provide guidance for reducing the barriers in receiving care.Guide for Reducing Barriers to Virtual Healthcare (the Guide) is the result of a collaboration between the Inclusive Design Research Centre at OCAD University and the National Research Council of Canada as part of the Pandemic Response Challenge Program (visit the project wiki site for more details). The Guide was created using inclusive methods for participatory design and incorporates input from Canadians who have experienced challenges and successes in receiving healthcare, healthcare practitioners who have provided services during the COVID-19 pandemic, and a review of information on current virtual healthcare practices

Co-design method

This guide was created with input from seven co-design participants of differing cultural backgrounds, languages, ages, and abilities. Five practitioners across Canada also provided their professional input and insight into providing care with remote services during the COVID-19 pandemic. Co-design method details are available on the project wiki.

An evergreen guide

This guide is authored with the intention that it will grow, adapt, and be adjusted alongside with changes in the healthcare landscape and the people engaged in it. The Guide does not aspire to be complete at any time. The Guide is an ongoing project and will evolve with input from stakeholders. See Contributing to this guide, below for additional information on how to participate in the evolution of this guide.

Understanding barriers

This guide outlines barriers in terms of functional requirements and personal constraints that need to be considered to provide flexible ways to access services or operate devices and systems that may be part of virtual healthcare. When understanding barriers to access, it is helpful to use the social model of disability as the standpoint. The social model views the product, environment, design and even society as the source of disability not the individual. The social model is counter to the medical model which views disability as a deficiency rather than difference. In the social model way, a barrier or a disability can be viewed as a mismatch between the needs of the individual and the options provided by the service. Systems (from technology to social) that are flexible and responsive to individual needs and preferences are most likely to be accessible and able to meet the needs of diverse populations, including needs not yet articulated. To support access, it is best to address mismatches affecting individuals rather than homogeneous "vulnerable populations".

Scope

Virtual healthcare can mean any part of a healthcare experience that is not in person. It can be healthcare that is conducted synchronously or asynchronously. For example, healthcare can be live and synchronous on the phone or video call with a receptionist, pharmacist or doctor, or asynchronous using a website, app, or messaging system where an immediate response is not expected. While the scope of this guide is virtual healthcare, it has potential for broader application of in-person practices and physical spaces.

Possible audiences for this Guide

While written for the virtual healthcare context, the Guide has broader applications. The following list of possible users of the Guide is not exhaustive:

  • Recipients of care, and their circle of care,
  • Practitioners, which includes:
    • family physicians,
    • nurse practitioners,
    • pharmacists,
    • telephone health advice services,
    • medical office administrative assistants,
  • system builders & designers
  • procurement officers

Practitioners can use this guide to help identify areas in their practices, processes, or services that may be causing challenges or barriers for others. The Guide can also be used to identify areas that are working well so those offerings can be expanded and improved.

Individuals engaged in healthcare, as recipients of care or as members of a circle of care, can use this guide as a resource to help them increase their understanding of virtual healthcare, and learn possible strategies to improving their healthcare interactions.

The guide provides suggestions, ideas, and approaches to establishing and enhancing existing practices; it is not a checklist of features or tasks to be implemented. The Guide can also be motivation for changes to systems and approaches for inclusion. For existing products and solutions, this guide can be used to review, validate, and plan for future improvements.

Parties looking to procure systems or who are examining their current systems can use this guide to help evaluate their processes to identify areas for improvement, new features to request, or gaps in their existing practices.

How to use this guide

The Guide provides suggestions, ideas, inspiration, and approaches to establishing and enhancing existing practices; it is not a checklist of features or tasks to be implemented.
Many of the guidelines are interconnected, related, and work together. The process of addressing one issue might lead to addressing other issues as well. This is a result of working and engaging in a complex, evolving, and interconnected system (see Inclusive design for healthcare, below).

The guide may be used to develop design standards. When using the Guide, choose to implement the guidelines that will work best for your context, it is unlikely that all the guidelines will fit a single context. Just as needs and preferences change over time, the guidelines that fit a context may also change over time. Reassess guidelines that fit your context in later iterations of your products, systems or approaches.

Contributing to this guide

The live version of the Guide is hosted on the Fluid Project wiki. Fluid is an international community of inclusive designers, developers, researchers, and other members who believe that inclusion can be accomplished through open collaboration. Anyone can contribute to this guide by becoming a Fluid Wiki editor. Editorial oversight will be provided by the collective Fluid community.

Glossary

Circle of care:

  • providers of care or support for an individual. This can include medical practitioners, therapists, support care workers, as well as family and friends.

Context:

  • individual circumstances that affect the needs and preferences of how someone may be able to address tasks; they can be physical (e.g. a noisy environment) or experiential (e.g. financial stress).

The Guide:

  • refers to this document Guide for Reducing Barriers to Virtual Healthcare.

Guideline:

  • considerations for a virtual healthcare goal or objective that is general in scope including functional needs, practices, and possible software approaches.

Patient-centred care (also person- or family-centred care):

Practitioner:

  • a term used to generally describe a provider of medical care.

Primary care provider:

  • general practitioner, nurse practitioner, physician assistants, etc. for whom a referral is not required.

Recipient of care:

  • a person who is receiving treatment or care from a practitioner as a patient or client. Also referred to as the "individual" the guidelines.

Virtual healthcare:

  • any part of a healthcare experience that is not done in person. For example: on a phone or video call with a receptionist, pharmacist, or doctor. Virtual healthcare can be conducted using combinations of tools like a website, web conferencing app, text messaging, and telephone.

Structure of the guidelines

The guidelines are grouped under categories (e.g. practitioner, technology) and have a unique name and number. Each guideline begins with a high-level, plain-language version of the content for those who want to understand the issues, concepts, and approaches to reducing barriers to virtual healthcare. Next, each guideline is divided into five sections:

  1. Functional needs:
    • individual services or supports that are needed to accomplish the task or goal.
  2. Clarifying questions:
    • questions that help expand the understanding of different perspectives, including client and patient perspectives, and support thinking critically about needs. Clarifying questions can also be used to help validate practices and software approaches. 
  3. Practices:
    • different approaches that can help address functional needs in a virtual health context. These practices are flexible rather than prescriptive and may not be applicable to every situation and context. Use these practices as they are, build on or adapt them, or create your own inclusive approaches that suit your situation. 
  4. Software approaches:
    • ideas that can help address functional needs by using a software design, feature, or existing technology combination.
  5. Other related guidelines:
    • links and references to other related guidelines 

Inclusive design for healthcare

This guide follows the three dimensions of inclusive design (Reference: Treviranus, J. (2018). The three dimensions of inclusive design: Part one. Medium.com. https://medium.com/fwd50/the-three-dimensions-of-inclusive-design-part-one-103cad1ffdc2) contextualized for healthcare. Using these three dimensions as values helps provide a framework in which to develop guidelines for virtual healthcare that reduce barriers.

Plan for human diversity

In healthcare there may be individuals who exhibit the same healthcare needs, but the delivery of care and their outcomes can be drastically different from each other. These differences can be explained by the fact that everyone is unique and has different backgrounds, contexts, and personal needs. Adapting standardized practices to meet such a wide human diversity requires approaches, tools, and systems that are flexible and robust.

Use inclusive practices and tools

To create guidance, practices, and approaches that are useful to diverse individuals, the traditional strategies of "guidance by industry experts" alone is not enough. The people working and engaging in healthcare at the margins often experience a wide spectrum of challenges and must overcome many different barriers. By intentionally seeking out the involvement and perspective of these individuals through participatory design approaches, their lived experiences help create guidance, practices, and approaches that not only address the difficult issues at the edges, but also help everyone. The tools used in these co-design activities must also be inclusive and accessible to support full participation. The goal is to enable design by and with stakeholders rather than design for.

Recognize complexity, evolution, and interconnectedness of systems

Creating designs, systems, and guidance that have longevity and are broadly applicable requires that approaches consider coexistence in complex, evolving, and interconnected systems. A solution created to address a single need will only be useful if the system it resides in does not change. Instead of creating a solution for a static context, healthcare systems and processes should aim to adopt more resilient approaches that have broader beneficial impact within their interconnected systems and ability to account for an ever-changing, healthcare landscape.

Guiding principles to reduce barriers

These principles extend the concepts from Inclusive design for healthcare deeper into the context of the practice of reducing barriers to quality healthcare. These guiding principles are informed by the Co-design method (see above).

Design for diversity

Human diversity can be expressed as the many different needs and preferences individuals have. Needs and preferences are not static; they change with the environment, time of day, and personal circumstances. An individual may need or prefer many different modes of access along a healthcare journey.

Consider, for example, health systems used by patients and practitioners either in-person or virtually, that are available in Canada's two official spoken languages: English and French. If someone's preferred language is not one of the two official languages, then language can become an access challenge and, a barrier to quality healthcare. Having a system that can easily flex to provide translation or sign language, means that the system can continue to work as intended without this barrier to care.

It is more achievable to have systems that adapt and flex to different needs and preferences when diversity and flexibility is part of the core design.

Extreme and evolving difference should be the baseline

In healthcare interactions, the most unique and extreme differences should be considered the baseline for creating quality healthcare access. If the focus of interactions is commonalities, then there will be an inability to reach 20% of the population while continuing to uplift 80% of the population (see: Figure 1, below). If instead, the focus is on the 20% with the most unique needs and preferences then the remaining 80% will be included by design. As individuals spread out from the hypothetical average at the centre of the scatterplot of needs, their needs become more diverse and there is greater difference in needs between this 20% than between individuals in the 80%. This diversity means that one-size cannot fit all. Instead, systems need to flex to fit individuals. Inclusive processes and individualized preference expression are ways healthcare systems can adapt and flex to support one-size-fits-one approaches.

Figure 1: Creating solutions for the inner 80% majority by nature excludes the outer 20%. But by designing for the other 20%, the inner 80% benefit from those solutions.

Contextualization can individualize healthcare experiences

Contexts are individual circumstances that affect the needs and preferences of how someone may be able to address tasks; they can be physical (e.g., noisy environment) or experiential (e.g., financial stress). Contexts are not singular; an individual can have multiple contexts that layer and overlap. Some contexts can change rapidly, while others can be more static, contexts can include history, patterns, preferences, and needs. Practitioner and client understanding of the rich and evolving complexities of an individual's contexts can remove ambiguity, enhance the personalization of healthcare, and support a patient-centered care model. Consider, for example, heart rate data logged by a personal wearable device — the information collected may be interesting but much more useful when that data is contextualized. Maybe the client had less sleep last night, is going through weight fluctuation, is experiencing housing insecurity, or their child is having problems at school. With these layers of context, the data becomes much more useful for individualized healthcare.

Supporting a patient-centered care model encourages patient agency. Simply being told about something versus being invested in the development and control of something can have psychologically different outcomes. Studies show that patient agency and the involvement of their non-clinical circle of care in healthcare decisions has been "associated in primary care settings with reduced pain and discomfort, faster recovery in physical health, and improvements in emotional health". https://www.ncbi.nlm.nih.gov/books/NBK207234/

Understandability is fundamental to quality care

Everyone should be able to understand and comprehend their healthcare situation including care options, costs, privacy, and rights. The interaction goal is to equip both recipients of care and practitioners with the tools and mindset to have effective and meaningful exchanges. Lack of understandability is a common reason for anxiety and confusion.