The intersection of Patient and Public Involvement and Engagement (PPIE) and Human-Centred Design (HCD)

Posted by s.aragon on 11 January 2023 - 10:00am
Alan Turing Institute entrance
Courtesy of the Alan Turing Institute

By Meag Doherty, SSI Fellow

This is the second of four blog posts related to the topic of Human-centred design. 

Converging disease agnosticism and multiple long-term conditions research 

At first glance, the broad goal of the All of Us Research Program – a historic effort to collect and study data from one million or more people living in the United States – seemed distant from the specific focus behind Turing Institute’s AI for multiple long-term conditions: Research Support Facility (RSF) project. But once I started talking with Sophia Batchelor about giving a talk at the Turing Institute last month, the similarities quickly emerged. 

At the core of these two programs, and many others, is the need to build trusting, bidirectional relationships with participants to achieve more significant advances in human health. And two related paths to enable such relationships are Human-Centred Design (HCD) and Patient and Public Involvement and Engagement (PPIE). 

I wanted to take an opportunity to outline these two paths, demonstrate how we have operationalized a few practices at the All of Us Research Program, and continue to build bridges with like-minded research staff.

The following is a summary of the talk, RSF seminar series: Everyone has a say, Embedding human-centred design (HCD) in the research setting:

HCD/PPIE maintains focus on outcomes

To ground the discussion, we took a few moments to look at the definitions for both terms with a particular focus on results. Asking, how will the world be different when we apply these methods?

“This [human-centred design] approach enhances effectiveness and efficiency, improves human well-being, user satisfaction, accessibility and sustainability; and counteracts possible adverse effects of use on human health, safety and performance.” - ISO definition of human-centred design 

“NHS England has more power to improve access to services, reduce health inequalities in communities and make better use of resources.” -  NHS England Patient and Public Participation Policy (2017)

Meet people and communities where they are and build trusting relationships: the essence at the intersection of human-centred design and PPIE. Trust and safety are the outcomes.

Human-Centred Design at All of Us Research Program

Bringing Human-Centred Design to life inside a large organisation is an evolving process and approach. Every organisation, project, and program will operate differently but I shared how we work at All Of Us Research Program. Our approach is broken down into four ongoing processes and services:

Identify insights 

Uncover user needs from existing products and experiences and prospective users via in-depth interviews, surveys, and other user research methods.

Concept, test, and define solutions

Measure twice and cut once. Once we look at a problem, we run brainstorms and design sprints alongside our users to determine the solution.

Support design and implementation

Handoff and support. As part of a large, multi-award consortium, our discovery and design work often gets passed onto a program partner for implementation.

Research and design operations

Ensure smooth operations of the HCD methods. Quality and research integrity are everyone’s jobs, but we have a dedicated HCD operations team to keep everything on track.

Getting started on human-centeredness

Having practiced HCD methods over the past ten years across government, industry, and civil society, the following tips remain true for every project:

  • Find your allies. Lean on the people who already support your way of working.
  • Show, don’t tell. The HCD process sometimes unlocks more insight than the result.
  • Start today. Don’t wait for the perfect experience; it won’t come. 

Emerging topics in HCD/PPIE

The presentation generated a lot of enthusiasm and discussion around the clear overlaps between HCD and PPIE and an interest in exploring how the practices can continue to converge. And also a curiosity about the specific needs of patients in the research context.

Attendees were curious about particular methodologies and toolkits (Fellow SSI Fellow Ginestra Ferrara is working on one).  I mentioned an example of co-design, where patients share in the decision-making process
Attendees were curious about particular methodologies and toolkits (Fellow SSI Fellow Ginestra Ferrara is working on one [link to blog post #1 where I mention Ginestra’s work]).  I mentioned an example of co-design, where patients share in the decision-making process.

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