Traverse delivered a multi-strand public and stakeholder dialogue and engagement programme to gauge opinion on the introduction of new IVF-based techniques for the avoidance of mitochondrial disease.
Traverse (formerly OPM Group) were asked by Innovate UK and Sciencewise to design and run public dialogue exploring the concept of stratified medicine with members of the public. The aim was to identify how stratified medicine can best contribute to healthcare and to understand how people feel about it. We ran six reconvened workshops with a cross-section of the public, some with a specific focus on patients and medical students. We worked hard to ensure that everyone present was listened to equally and carefully. Quality analysis and reporting ensured that the opinions and ideas of all who attended, including groups that are often overlooked, were properly represented.
The dialogue aimed to explore with members of the public the concept of stratified medicine, with a view to identifying how stratified medicine can best contribute to healthcare. The dialogue explore social and ethical issues raised by the science and aimed to understand how people feel about medical prescriptions based on genetic, or other, characteristics.
Importantly, one of the main aims of the dialogue was to allow members of the public, policy makers, scientists and other stakeholders to discuss the issues and learn from each other in an open forum. This means involving stakeholders in the design of the process, inviting experts to debate with the public, and asking the public to help report the outcomes back in a stakeholder summit at the end of the project.
The dialogue involved four main themes and components:
- Two sets of reconvened workshops. Lay members of the public were engaged in deliberations facilitated by the OPM Group. These workshops are also engaging expert participants who have backgrounds in the clinical aspects of stratified medicine and bioethics. Expert participants are there to answer participants’ questions of clarification about the science and practice of stratified medicine, and gain insight for their own work in the field.
- Four sets of reconvened workshops. Patients, young experts (medical students), young people and young patients, were engaged on the topic in deliberations facilitated by the OPM Group.
- Self-facilitated workshops. Local patient and community groups will run their own workshops following train-the trainer sessions run by the OPM Group. By developing materials and training community members to run their own self-facilitated workshops we hope to gain more ‘natural’ responses to key issues. There are challenges for us in maintaining consistency within these self-managed groups, which we’re addressing through accessible digital materials, training sessions and follow up interviews.
- Collaboration with Relevant Experts. Stratified medicine is an area of emerging research, making it difficult to clearly define the scope of the topic for participants. In a similar fashion to that envisaged in this project, we have worked extensively with experts in the field to develop multimedia materials which preserve this complexity and uncertainty in the discussions we have with the public.
The direct output of the project is a report documenting our findings about the learning journeys people take in understanding stratified medicine, the social and ethical issues they are concerned about, and recommendations about how to manage these implications as stratified medicine enters the health care system. However, identifying these recommendations isn’t the end of the dialogue project, it’s vital that they are heard by the right people to act on them. We will be working with the TSB to organise a stakeholder summit where everyone from policy makers to industry leaders will come together with the dialogue participants to explore the findings and agree a way forward. We hope that by inviting decision makers to share in the outcome of the project and take ownership of its findings we can generate real impact.