Advocate for patients in research
I work as an advocate for patients in research in a number of ways. I am passionate about involving patients and the public in health research to ensure that studies address what is important to patients and their families and are acceptable to participate in.
I have been a carer for close family with a range of health conditions (cancer, depression and chronic fatigue syndrome) for many years. My career has been spent in health research management across the commercial, public and voluntary sectors following my early academic career to post doctoral level in biochemistry and microbiology.
My combined experiences led to my interest in facilitating effective patient and public involvement in health research. I now work part time as the Public Involvement Lead for the Health Research Authority and have a number of other occasional public involvement roles including:
- member of the Grand Challenge Patient Panel and public involvement training facilitator for Cancer Research UK;
- Associate Member of INVOLVE;
- senior facilitator for the Macmillan / NIHR Building Research Partnerships [public involvement] workshops;
- lay reviewer for the NIHR Evaluation Trials and Studies Coordinating Centre (NETSCC);
- public co-chair of the NETSCC Patient and Public Involvement Reference Group;
- Research Partner at the Wales Cancer Research Centre;
- member of Independent Cancer Patients’ Voice;
- public contributor to two projects at the Health Services Research Unit at the University of Aberdeen:
STEER: Systematic Techniques to Enhance rEtention in tRials, which aims to find new ways to minimise the damaging consequences of people dropping out of clinical trials.
PRioRiTy II: Prioritising Retention in Randomised Trials, which is a Priority Setting Partnership working in association with the James Lind Alliance that aims to identify, agree, prioritise and disseminate a list of the most important unanswered questions around the retention of patients in clinical trials
- member of the editorial board of Research Involvement and Engagement, the open access journal launched by Biomed Central in November 2014.
Involvement Matters is my blog about the involvement of patients and the public in research. My views are informed by my personal experiences and those of people close to me and by the work I do.
Public involvement matters to me and in the greater scheme of things.
Involvement Matters is my personal view of the world of involvement and anything I say cannot be taken to represent the views of any of the organisations I work for or with.