“We engage people with lived experience of mental health conditions when we user test our products.”
“But who decides which questions to ask?”
This was a lightbulb moment for the ieso team, shared by one of our Lived Experience Partners at a company meeting to plan how we were going to develop a digital health product that delivers real benefits for our patients. After all, our research insights are only as relevant as the questions we think to ask, and who we ask them of.
At ieso, we build our products, services and research from a foundation of Responsible Innovation that places our patients at the heart of everything we do. Central to this is involving people with lived experience of mental health conditions to shape our work so that it is trustworthy and positively impactful.
We have co-developed our Responsible Innovation strategy with people with lived experience since its inception – starting with a set of guiding principles that inform how we work. Since then, we’ve worked together to build, test, evaluate and improve a programme of lived experience involvement, and embed it across the company.
While lived experience involvement is increasingly seen as best practice in academic and healthcare settings, it is not yet the norm in digital health tech.
In this post, we’ll share what lived experience involvement is, how it adds value for patients and digital health innovators, and the lessons we’ve learned from implementing it at ieso.
What is lived experience?
In a mental health setting, “lived experience” typically refers to a person’s experience of mental ill-health, treatment and recovery. It is person-centred knowledge that brings important and often overlooked perspectives to mental healthcare and innovation. The knowledge can be first-hand, or it can come from caring for someone with a mental health condition.
Why involve lived experience in digital health tech?
When we involve people with lived experience, we apply this knowledge to shape our product development, healthcare delivery and research in ways that maximise patient benefits. It makes our work more impactful by directing our efforts to areas that are most likely to meet our patients’ needs, resolve their concerns, and earn their trust.
How have we involved lived experience at ieso?
Some of the projects we have embedded lived experience into include:
- Co-designing research studies and trials, including plans to work with lived experience collaborators throughout implementation, evaluation and dissemination.
- Co-developing inclusive trial design by working with people with lived experience, including those belonging to communities that are under-represented in mental health care and research, to understand and resolve barriers to engagement.
- Interpreting insights from user research to inform digital product design and development.
- Shaping clinical deployment pathways for our digital products that will meet patients’ needs and thus facilitate adoption.
- Co-creating our company equity, diversity and inclusion strategy.
- Shaping marketing campaigns to reach under-served groups.
- Co-authoring a set of FAQs that clearly explain the research we do, how we use and protect patient data, and the choices our patients have.
What have we learned?
In our journey to embed lived experience across ieso, we’ve learned five key lessons:
- Start early – The sooner lived experience is embedded into a project, the greater the scope for patient-centred design and impact. Waiting too long risks spending more time and resource unpicking suboptimal decisions further down the track.
- Involve meaningfully – To add real value, people with lived experience must be empowered and enabled to fully engage in the projects they are asked to be a part of. Lived experience involvement is not a tick-box exercise: tokenistic efforts put undue burden on contributors, limit the potential for positive patient impact, and erode trust. Just like all good collaborative practice, we have found it particularly helpful to share briefing materials ahead of meetings, provide multiple options for contributing input, be flexible with ways of working, and protect time and space for reflection.
- Form follows function – Lived experience involvement comes in different forms. Identify the needs of a particular project and work with people with lived experience in the way(s) that will best meet those needs. At ieso:
- Lived Experience Partners work alongside us as collaborators to apply their expertise in the systemic issues that affect those with mental health conditions to shape strategy and implementation.
- Lived Experience Panels bring a diversity of individual perspectives that we use to better understand and address our patients’ needs, perspectives and concerns.
- Lived Experience Advisors are embedded as members on various steering and governance committees that evaluate our plans and practices, and hold us to account.
- Nurture shared understanding and trust – This starts with agreeing clear objectives, aligning expectations, and making time for questions and learning. It enables the challenging yet constructive conversations that accelerate progress. Sharing worked examples of successful projects lowers the barrier for teams to embed lived experience in their work by illustrating what good practice looks like and how it adds value.
- Close the loop – Remember to give feedback to lived experience contributors on how their input was actioned and the impact it delivered. Celebrate the successes. Be honest when it was not possible to follow up on a recommendation and explain why. This promotes ongoing engagement and trust.
What’s next?
We’d love to start a conversation with our colleagues within and beyond the digital mental health sector. How have you involved lived experience in shaping your products, services and research? What’s worked well? What challenges do we need to overcome? How can we learn and improve together?
In May, we’ll be spotlighting our brilliant Lived Experience Partners: Paul Edwards and Bayparvah Kaur Gehdu from the UK, and Jose Caballero and Marcus Alston from the US. Stay tuned for more!
