-
The HaNC PPI Research Forum is group of patients and carers whose aim is to support clinicians in all aspects of their Research into Head & Neck Cancer and to ensure that the patient voice is fully heard. It also acts as a fundraiser for locally based head and neck cancer research.
Role of HaNC PPI Forum
The main role of the group is to:
- provide advice on research proposals from a patient and carer perspective
- act as advocate for patients and carers to help ensure consideration is given to their views.
- help ensure that research is patient and carer focused
- suggest new directions for future research
- be involved in the management of research studies.
Over the years, the role of the Forum has expanded to include fund-raising activities for local head and neck cancer research projects in the Cheshire and Merseyside area. These tend to be for many important areas, which find it difficult to find funding from the major national cancer charities (for example, patient care and support).
Membership
Given the scale of research activity currently underway at the Liverpool Head & Neck Centre, new membership is extremely important. As such, the Patient Research Forum actively seeks new members, whether they be patients, carers, family friends or fundraisers.
So feel free to attend the next Forum meeting, and you will be made very welcome.
Meetings
The PPI Forum meets up to six times every year and discusses a wide range of issues with guest presenters.
Researchers, whether they be consultants, specialist clinicians or students, regularly attend these meetings to report on their current projects, provide updates on new technical developments and initiatives, and to seek patient and carer advice on their future research activities.
Details of our upcoming meetings are always prominent on our Facebook (@HaNCCommunity) and Twitter (@HaNCCommunity) pages.
Further Information
If you would like any more information about the PPI Research Forum membership, its activities or future meeting dates, please contact Mike McGovern (Chairman) on HaNC.liverpool@hotmail.com
-
Liverpool Oral Medicine Patient Research Forum is a patient focus group for patients interested in contributing to research studies relevant to Oral Medicine.
It was established in 2015 and patients have been active in producing patient information leaflets and representing the patient voice on clinical trial management groups and research grant applications. We aim to meet every six months in Liverpool.
Why have a group?
There is increasing awareness within the NHS of the benefits of involving patients in their care. Through this group, we hope to give you the opportunity to tell us what you want from this service and how we can provide you with better care. This group also provides an opportunity to become involved with research. Patients who wish to become involved in the group are not expected to discuss their diagnosis or treatment with other patients. Ultimately, we would like this group to be run by patients.
What the group will do?
Promote a patient perspective.
Improve communication between the service providers, the group, and the wider population.
Discuss needs of patients, current services, changes and developments
Actively involve patients in decisions regarding future research topics and clinical trials
Produce patient information, newsletters or leaflets.
Obtain patient feedback.
What we can’t do?
This is not a forum for discussing your own diagnosis or treatment with members of staff. Neither is it a place for discussing complaints; a complaints policy is in place at the Dental Hospital.
Example Outcomes of Previous Meetings
A Glossary of Terms to aid interpretation of clinic letters for patients
An information leaflet on oral dysplasia
A Patient Questionnaire to obtain feedback from patients attending the clinic
All of these things are being addressed in the short and medium term. Doctors and patients are working together to make them happen.
Current Research
Staff working on the Dysplasia clinic are involved in research into new treatments for, and ways of diagnosing, dysplasia. Without patients, clinical trials into new treatments or techniques cannot happen. We will ask your opinion on research topics and ways that you would like to be involved in research. Interested patients can get more involved in the clinical trials by acting as a patient representative. Opportunities will be discussed at our meetings.