Here at the merseyside regional head and neck cancer centre we have an international reputation for our patient care and also our research activities. We currently have a number of studies on-going within the unit and have set up a Patient & Carer Research Forum.
In 2007 I and a number of other former patients were asked to help establish the Patient Research Forum.
The aim of the PRF was to provide advice and guidance to researchers about research projects, to help develop new ideas and directions for research, to help ensure research has a strong patient/carer focus and has an appropriate place in the cancer journey. For example, one of the topics discussed by the Forum at an early meeting was the issue of finance. We felt that some patients/carers might suffer a financial burden as a result of a cancer diagnosis; there was however, little in the way of research data analysing the extent of the financial impact on individuals. Subsequently therefore, a preliminary study was commissioned by the Forum and carried out by a dental student, to assess the impact on patients and carers following diagnosis.
The study found that many suffered real hardship, with 50% of those interviewed reporting that illness had caused a large or unbearable financial burden. This study ultimately resulted in a benefits adviser being recruited by the Head & Neck unit at Aintree to assist patients with financial matters.The research Forum has been very active,assisting research in many areas including carer burden,PCI,internet access and FOR.Since its early days, membership of the Forum has increased and its role expanded to include the overseeing of fund-raising activities and the allocation of resources to fund research projects here in Merseyside and Cheshire. Recently, following a tendering process, we agreed to fund a three year study looking into reasons for late diagnosis; a problem which affects many in this region and beyond.
Early detection is crucial and can impact significantly on the ultimate outcome for patients and the Forum felt this was an important piece of research which might otherwise not be funded. This work involved the training of a Phd student over the three year period.The Forum has also funded a study of patient and carer experience in advanced cancer cases,to assess the quality of decision making when considering treatment options.The forum also agreed to fund a study into alternative treatment protocols to avoid/minimise the use of tracheostomies – again another area of importance to patients.
The Aintree groups are a valuable mechanism for patients themselves to decide what they consider to be appropriate areas and to provide funding for important studies which might otherwise go unfunded.The involvement of patients and carers in research (PPI) is of increasing importance. Frequently, funding bodies require lay participation in the design and review of research projects. Members of the Research Forum have been active in this role locally and nationally, sitting on trial steering committees for clinical trials and in identifying and considering new areas for research. Forum members also have established links with the Liverpool Cancer Trials Unit and have assisted in establishing a PPI Group to provide guidance to those research teams.
The Research Forum meets 3 times per year in February,June and October. Meetings are informal and deal with a range of issues including current and proposed research.Frequently researchers attend to report on current projects or to canvass patients’ views on proposed studies.Meetings may also deal with other matters such as fund raising events.Involvement with the forum is a rewarding experience and the work is highly valued by the researchers.
There are many reasons why patients and carers become involved.For some it is an opportunity to give something back and help influence research to benefit others;others may have had a negative experience and wish to channel this into something more positive.Some are interested in bringing about improvements in health and social care.There are many other reasons.
The group meets on the first friday in February, June and October. Meetings take place in the clinical science building, University Hospital Aintree from 09:30am - 12noon.
The group currently has 8 members; 6 patients and 2 carers but we are looking to increase membership.Those interested can contact the chairman Mr D Macareavy.
Role of the PRF
The role of the Patient Research Forum is:
- To provide advice on research proposals from a patient/carer perspective
- To act as patient/carer representative to help ensure consideration is given to their views/interests
- To help ensure that research is patient/carer focussed
- To provide suggested direction for future research
- Admin support or other ways to actually get involved and help the research happen