May, June, September and October 2009

Getting Involved and Influencing Research workshops in 2009 are aimed at consumers involved or who may wish to become involved in cancer research as well as any researchers/clinicians working directly with them.

25 April 2009
The Yorkshire Cancer Research Network, Leeds Cancer Centre, University of Leeds and CR-UK are holding an open day where you can hear about the work that they do.

They are keen to engage the public and patients they serve in learning more about the world class cancer research that is carried out and how they might consider becoming involved in this process. Having the input of the public is crucial to effective and meaningful research outcomes. This involvement could simply be reviewing information designed for patients, or by joining a steering groups/committee once every few months, or by helping to get the message across about the importance of cancer research in developing treatments in the future, through other events.

31 March 2009
UKCRN are holding a course on 'Fundamentals of Involving Patients as Partners in Clinical Research Activities'. This course is aimed at both health professionals and consumers. More information can be found on the UKCRN website.

11-12 November 2008
A personal view from Richard Stephens, a cancer and heart patient

I attended the 6th INVOLVE Conference in November not simply as a cancer patient, but with a background in user involvement in all public services, at the design stage as well as monitoring performance.

I found many useful examples of new methods of involvement, and of the impact of user involvement in changing service delivery. These came both from workshops (e.g. "Involving young people in evaluating mental health projects") and also from the many posters ("Ambulance services for Faith and BME communities").

The conference was packed with small projects and groups making big differences, almost all of them working towards better service delivery or towards evaluating psycho-social impacts on patients or costs to the NHS and/or the patients.

"Evaluation" was the single most common topic in the workshops, and much of it was to the people who had taken part in the research and/or who would be directly affected by the results. This made for some challenging questions for the researchers, and for entertaining and informative ad hoc debates over tea and coffee.

Some of my fellow cancer patients observed that seeing research results presented to research subjects in Nottingham also made a nice change from academics presenting their results to other academics in exotic foreign locations or in learned journals.

Harsh comments perhaps, and certainly unfair on Nottingham, but the issue of publicising research and ensuring that reliable information gets to patients was one of the issues raised in a lively and thoroughly enjoyable final session led by Derek Stewart with 200 people fully engaged with each other and with some big themes.

This was a marked contrast to the keynote talk on Day One, a top-down lecture so full of jargon that even after 23 years in local government, I had problems keeping up.

"What exactly are Health Service users accessing strategically-centred multi-therapeutic and diagnostic resources?" I had to ask the lady next to me.
"Sick people going to their local health centres," she translated.

At lunchtime on the second day there was a Soapbox feature. Delegates stood up and had 3 minutes to get across a point to their audience. The loudest round of applause went to a delegate who told fellow patients that attending meetings is only one tenth of the work.
"You need a degree in email!" he warned, "Follow the online audit trails!"

The idea that patients can help set strategic priorities for research was mentioned directly in only two workshops, both of which were led by speakers from the cancer community. The notions that patients might sit on funding bodies or trial management groups or become researchers themselves was more readily accepted, but even so it seemed that cancer (and stroke and Alzheimer's) is considerably further forward than other diseases.

Surprisingly heart disease barely registered as a topic throughout the 3-day conference, not even when every delegate received a free bag of crisps on arrival in addition to the platefuls of chocolate biscuits at all other times.

There was also very little on experimental medicine, and the next INVOLVE conference in 2010 offers an opportunity to report progress on involving consumers but also in how consumers can engage in research at a much earlier stage than most of the examples currently seen in our health services, and also how consumers can help set very wide and far-reaching research agendas about causes of disease and about ranges and types of treatments, therapies and interventions.

These are issues that have not yet made an impact at an INVOLVE conference, and our ECMCs can and should lead the way. It would also link well with the plans of the NCRN Consumer Liaison Group to spend 2010 demonstrating how consumer involvement adds value to all stages of the research process.

5-8 October 2008
Miriam Harris, Consumer Representative, NCRI Board Sub-group on Clinical and Translational Research

I attended the 2008 National Cancer Research Institute (NCRI) conference as one of two new consumer recruits to the NCRI Board Sub-group on Clinical and Translational Research. I had been to a number of meetings of different groups - the Board Subgroup, the Consumer Liaison Group, a presentation at an Experimental Cancer Medicine Centre, an international partners' meeting - and was having difficulty identifying what my contribution as a patient with no experience of participation at local level or involvement in a trial might be.

Although I could have attended the whole five days, thanks to the generosity of the Consumer Liaison Group Bursary Scheme, I decided that two days would be enough as an initiation - and so it proved. Any longer and I would have suffered from overload.

The variety of plenary lectures, presentations, posters and stands was initially bewildering, but I gradually found my way around, began to recognise colleagues from earlier meetings and to choose sessions to attend.

I was impressed with the range of topics under discussion, from basic research at cellular level to work on the cost of cancer - a fascinating session this. The session on ensuring equality and diversity in recruitment to trials was very thought provoking. "Living beyond cancer" raised all sorts of issues, with startling statistics.

There were lots of consumers there, contributing confidently to the Q&A sessions and playing an important part in the proceedings. I made contact with consumers with similar experiences to mine and was reassured about the possible development of my role.

Everyone I spoke to was most welcoming and spoke warmly of the part that consumers can play in all aspects of the NCRI endeavour; there was encouragement to ask the awkward questions, however daft and however unwelcome to practitioners they might be.

April to May 2008 
The Wales Cancer Conference was hosted by the Wales Cancer Alliance and the Wales Cancer Institute. The event brought together members of the cancer community including researchers, health professionals, patients and carers, charities, policy makers and politicians. It was an opportunity to hear about the progress in areas such as basic research, new therapies and clinical trials as well as attend discussions on survivorship and palliative care.

Consumers were well-represented at the conference and to make sure that the event was inclusive, speakers pitched their presentations at both the lay and expert members of the audience. Professor Lesley Fallowfield, an expert in psychosocial oncology talked about the importance of good communication between healthcare professionals and cancer patients. She highlighted the success of training courses designed to help clinicians sensitively explain information to patients in a way that is understandable.

There were also very interesting sessions on palliative care and survivorship issues as well as presentations on the Wales Cancer Bank and the National Institute of Health and Clinical Excellence (NICE). The conference debate was a lively event with the two teams arguing whether or not all effective treatment should be free. Both sides put forward very strong cases but the winning team convinced the audience that all effective treatment should be free.

The Wales Cancer Conference was a very interesting and informative event which succeeded in communicating cancer research to its mixed audience of patients and public, scientists and health professionals.