Patient Research Cohorts Initiative Panel
Early this year two lay experts from the MRC Public Panel joined a specially-convened assessment panel chaired by Professor Stephen Holgate, Chair of the MRC Psychological Systems and Clinical Sciences Board, to consider proposals and allocate funding for the Patient Research Cohorts Initiative.
The MRC, the National Institute for Health Research and the Welsh and Scottish health departments have invested more than £7 million to establish small groups of extensively characterised patients for research. The investment will contribute to scientists’ understanding of disease and accelerate the development of new treatments, forming a key part of an overall strategy to turn scientific discoveries more quickly into health benefits for patients.
The assessment panel’s composition reflected the range of applications received and included experts from academia, industry and medicine. The lay members contributed to the discussions and decisions made at the meeting providing a lay perspective to all aspects of the assessment criteria in particular; health burden of the studies on patients and the general ethical concerns.
The public members of the panel were Jean Waters – a retired anaesthetist - and Ron Marsh – a retired marketing manager. Both members found their participation very rewarding and felt their comments were well received and valued by the rest of the panel.
Commenting on preparing for the meeting and the outcomes of the day, Jean Waters said:
“As one of the two lay representatives asked to join the MRC patient cohort initiative review panel, I felt a degree of responsibility for the Public Panel to make a difference. The call for proposals covered many medical specialties and with the short listed proposals divided between the two of us, many hours of preparative reading were needed before the panel met. Armed with my notes and a slight anxiety regarding the acceptability of my opinion, I joined the panel as a full voting member.
Any concerns evaporated following a warm welcome from the chairman and the realisation that our opinions received the same degree of attention as those expressed by the multidisciplinary experts around the table. I found it a very positive experience and the sense of purpose culminated when an adjacent professor commented ‘it’s really good having someone like you here. It gives a completely fresh perspective.’ If we left a feeling that the public panel voice was a positive addition, then our work was worthwhile and perhaps sets a model for inclusion in the future”.
Ron Marsh said:
“The MRC’s decision to include two lay members on the Patient Research Cohorts Initiative Panel came as a welcome development of my roles. The significant aspect of this was that our attendance became all the more effective through the encouragement and support given by the professional members present – both Jean and I were always given an opportunity to input and when we did our opinions were listened to carefully”.
On behalf of the assessment panel Tom Foulkes of the MRC’s Physiological Systems and Clinical Sciences Board said:
“For the Patient Research Cohorts Initiative, we decided that public representation was important, due to the potentially high burden on patients from participating in one of these cohorts. From the outset we chose to involve the representatives fully in the decision-making process, meaning that they were given the same voting and contributory rights as any other panel member.
Both Jean and Ron brought refreshing viewpoints to the panel discussions. Their input was valued by the other panel members, from academic and industrial backgrounds. Their comments were well-considered and relevant, addressing issues that may have otherwise been missed by the panel. On the recommendation of the panel chair, we plan to involve one member in an ongoing oversight group for funded cohorts. Given the success of public involvement in this panel, we hope to be able to include public members in future initiatives.”
Thirteen cohorts across England, Scotland and Wales have been funded, providing a portfolio of common and rare diseases, including type 2 diabetes, COPD and neuromuscular mitochondrial disease. The groups include both adults and children and are across a wide geographic spread.
The performance of each new cohort will be reviewed annually against agreed milestones and targets by an oversight group, also made up of representatives from industry, academia, medicine and lay people.
Find out more
If you are interested in finding out more about the ways in which the MRC involves patients and the wider public in its work, please contact:
Contact: Hala Patel
Telephone: 020 7670 5344
Email: hala.patel@headoffice.mrc.ac.uk