Projects

Stratified Medicine: a public dialogue

Background

Stratified medicine is an approach to healthcare based on identifying before treatment how likely a therapy is to be successful. This allows the right treatment to be given to the right patient at the right time. The Technology Strategy Board (now known as Innovate UK) sees stratified medicine as a leading area of healthcare research with the potential to provide significant benefits to patients and effect strategic shifts in the way healthcare is delivered. That the public understands these shifts is vital to ensure that new techniques are used in the best interests of all involved. The Technology Strategy Board, with Sciencewise, asked OPM Group to run a public dialogue programme which gave people the chance to have their say on these new techniques feeding directly in to the development of stratified medicine in the UK.

What we did

OPM organised 19 workshops involving about 180 people: a mix of members of the public with no specific knowledge of stratified medicine, young people, and patients and medical students. The workshops were delivered in various forms, from 5 patients coming together for an evening in November, to 50 stakeholders at a whole day summit in January. We used a range of tools to explore the science, the social issues and the implications for patient care. These tools included animation, video testimonies, hypothetical scenarios and discussion activities. The final event in this project was a workshop for stakeholders involved in the development of stratified medicine, designed to consider the implications of our findings for the development of stratified medicine. The workshops covered the following issues:

  • Definition and Communications
  • Implications for Patients and Care
  • Social Issues and Consequences
  • Research, Testing and Data Sharing

The dialogue sought to identify the human issues that are raised by stratified medicine and what these will mean for how it is delivered, for the individuals who will benefit from it, for their families, and for those for whom there will not be immediate benefits.

Impact

The final report presented our findings as well as the future challenges we identified for stratified medicine. By presenting these findings at a deliberative workshop with stakeholders involved in delivering stratified medicine we increased the reach of the findings, and supported the Technology Strategy Board’s ongoing aim to develop knowledge sharing. The keys findings from the workshops were:

  • A crucial challenge to developing a more stratified healthcare system is having a clear, consistent definition to communicate with patients and the public about changes that are taking place. Participants in the dialogue often felt that the terminology being used was inaccessible and had negative connotations.
  • Many participants felt that continuing to engage with the public was as important as accurate and accessible information for patients. Participants did not want to be merely passive recipients of information communicated via the media but instead be actively involved in the development of new healthcare models.
  • Participants identified supporting patients to make sound treatment decisions as a challenge for stratified medicine. Many believed that more stratified approaches would increase the amount of information with which clinicians and patients need to deal. As such healthcare professionals would need appropriate resources and training if they were to support patients effectively.
  • Equality of access was one of the most prominent themes of the dialogue. Participants emphasised the importance of understanding and mitigating any implications that stratified medicine might have for equality.
  • Participants felt it was important for the public to develop an understanding of the costs and benefits of stratified medicine to the UK healthcare system.
  • Participants in this dialogue were broadly positive about contributing data to medical research, provided that research participants have a choice about how their data is accessed and shared and by whom. They were most positive about contributing to research carried out by the public or third sector, where data was anonymised and held securely, and did not want any research contribution to be used to generate profits for private companies such as insurance and pharmaceuticals.