Insights from co-creation interviews

In 2023 we have been learning more about clinical trial experiences through interviews with key stakeholders.

On 18 October 2023 we were joined by new and familiar faces as we resumed our online co-creation workshops. We had participation from parents, clinicians and researchers.

In this session, we presented the top insights from 15 one-on-one interviews conducted during the year with people representing three stakeholder groups:

  • 5 parents who have a child born preterm and whose child took part in a clinical trial 
  • 3 neonatologists and 2 nurses who have worked on clinical trials with preterm-born children 
  • 5 adults who could have been eligible for a treatment as a child, for example because they were born preterm themselves

In these interviews, we asked questions around clinical trials and stem cells to dig deeper into these topics as we look for solutions to our co-creation challenge. The interviewees represented a range of countries, including The Netherlands, Mexico and New Zealand, and talked about their different experiences.

In Workshop 6, we presented the top three as well as additional insights which came out of the interviews according to stakeholder group. The co-creation participants then discussed the most surprising results for them before using an online collaboration tool to rank each of their comments and produce a shortlist of issues and problems for us to tackle in the final workshops.

Parent interviews top insights

We saw some frequent patterns across the three interview groups. For example, the importance of providing information to parents who are considering enrolling their child in a clinical trial in plain language, avoiding overly scientific terminology or jargon. There were also calls for a clear clinical trial roadmap so that parents can prepare themselves for the whole journey.

Taking into account these genuine stakeholder insights, the aim for future workshops will be to co-create recommendations for the design of a future clinical trial to ensure a positive user journey for caregivers and patients.

Workshop 7 takes place on Wednesday 8 November and Workshop 8 on Thursday 30 November. If you’d like to join a PREMSTEM co-creation workshop for the first time, you can sign up via Eventbrite.