Stratified medicine dialogue results used in report on the EC-funded Human Brain Project
The findings of the public dialogue on Stratified Medicine have been used in the recent report from King’s College London as part of the evidence base for their conclusions and recommendations on the social and ethical challenges of the Human Brain Project Medical Informatics Platform (HBP MIP). The Stratified Medicine dialogue was completed in 2014, commissioned by Innovate UK (then the Technology Strategy Board) and co-funded by Sciencewise.
The Human Brain Project (HBP) is one of the Future and Emerging Technology Flagship Initiatives which are funded by the European Commission and promote ambitious and science-driven research initiatives. The HBP was launched in 2013. It is a 10-year project in medicine, neuroscience and computing that brings together scientists and over 100 partner universities and companies from 20 nations across Europe. The project has a budget of over €1 billion.
The HBP report cites the dialogue findings in the section on the Emerging Challenges of Disease Signatures. It says:
“Evidence from related public dialogues and investigations of public responses to the prospect of ‘personalised medicine’ suggest that many people – at least in publicly funded health services – have much trust in their medical practitioners and will readily delegate their authority to them. However, there is evidence that some groups are less trusting; younger people and those from ethnic minorities, who are concerned about possibilities of discrimination in the allocation of treatments on the basis of such tests.”
The footnote at the end of the final sentence links directly to the Stratified Medicine dialogue report.
The HBP report is built explicitly around the principles of Responsible Research and Innovation, and the focus within RRI for engagement. The full list of recommendations is introduced by saying that:
“Many of the social and ethical challenges that the MIP[Medical Informatics Platform] faces can potentially be alleviated by having a strong consultation and engagement process with communities that may be affected by the work of the HBP. Integrating a broad range of communities and stakeholders into the research process of the HBP MIP (in some cases, with the aim of building long-term working relations) can potentially improve the quality of HBP research methods, outcomes, and their translation into future health technologies and clinical practice.”
More generally, the HBP report identifies three major challenges around data protection and data privacy which need to be addressed – around legality, trustworthiness and privacy. The report suggests that:
“Some of these challenges may be addressed by measures for technology management; others may be addressed via community-building activities around the MIP. These activities could involve clinicians, the pharmaceutical industry and other professional stakeholders, as well as patient groups and the general public.”
It goes on to say that many of the above, and additional, challenges “can only be addressed adequately by strong consultation and engagement with affected communities.”
The HBP report recommends a Public Engagement and Research Dissemination Plan be developed, as one of the nine recommendations it makes. The recommendations also suggest that future plans to work with others should “Remember communication is two-way.”, implying that communication strategies would be expected to be dialogic rather than one way.
Foresight Report on Future Medicine, by Nikolas Rose, Christine Aicardi and Michael Reinsborough (all King’s College London). Published June 2015.
See related project page: Developing Stratified Medicine