London Focus Group on Research Strategy

Following on from the “Your Say, Your Day, Your CRUK” event, I was invited to attend a Research Strategy day at Cancer Research’s head office.  Cancer Research are running a number of these smaller events around the country (each one with approx 8 people) following on from a number of points raised from the Your Say Your Day event. Well done Cancer Research for following this up.

The purpose of creating a research strategy is to bring forward the day when all cancers are cured.  However in order to fund all the research it would take an inordinate amount of money and way more (sadly) than Cancer Research have access to from all the mammouth fundraising efforts of you all.  This sadly means that not everything can be funded and research has to be ‘put on hold’ or simply not undertaken.  Inevitably this means difficult decisions based on so many factors.

Cancer Research have four main objectives in their research strategy which in brief are:

  1. Reducing risks of developing cancer.
  2. Diagnosing cancer earlier.
  3. Developing new treatments.
  4. Improving cancer treatments.

Each of these objectives were discussed in length at our meeting.  It was a great opportunity for each of us to add our own voice, experience and opinion as to the impact and importance of each of these objectives, in our minds.

Throughout the day there was a lively discussion.  For those of us affected by rare and rarer cancers it also gave us the opportunity to ensure that these were not forgotten in the discussions and included in the objectives.  Over 53% of all cancers fall within the classification of rare or rarer cancers however these are often not in the public eye as there are many cancers but only a minor number of people with each cancer so their ‘voice’ is quieter.

We discussed the emotional impact of cancer, particularly with reference to funding or working with parties looking at the psychoncological aspects.

Discussed was the ‘topical’ conversation of collecting data for BRCA 1 & 2 as to outcomes and how many chose mastectomy -v- lifestyle/surgery.

The EPIC study – where over 500m people from 10 countries have been recruited to research into diet and nutrition with reference to chronic conditions including cancer.

Our group, after lengthy discussion, thought that lifestyle research should be undertaken collaboratively with other charities, organisations, NHS England.  We felt that by working on a larger project across boundaries there would be more access to specific patients and carers able to provide research data and feedback before during and after diagnosis.

With reference to Objective 2 about early diagnosis, a question was raised “Do we find early diagnostic tests for cancers that are curable?”.  A difficult question to answer.  Logically, of course, so that noone needs be diagnosed and can live cancer free.  Logic would also say though that as not every research project can be funded, should the money not be spent on a cancer where there is no cure?

With reference to Objectives 3 and 4, there was a very lively discussion.  Where there are some treatments already should we develop new treatments?  Clearly a difficult one however logically (oooh logic eh?) medicine and technology is always improving, so why shouldn’t there be advancements are simply because of improved technology.  Just because something works it doesn’t mean that there may be a less toxic chemo or less invasive surgery?

One of the many aspects we looked at with reference to this was not only the survival statistics but the length of survival, quality of life and mortality rates.  Each of these have a slightly different bent to them but as people affected by cancer, we all said that actually quality of life was essential in surviving.  Therefore some surgeries which mean that a persons lifestyle is inhibited in such a way to make it ‘difficult to live’ may not be the best option (for some).

We also said that we appreciated Cancer Research (like any organisation) needs to make an impact.  We often, within business, talk of ‘quick wins’ and I guess for many within cancer research, this might be seen as an easy solution, not overly complex, perhaps for a ‘popular’ cancer or a project that perhaps doesn’t take long to complete.

We discussed the possibility of Cancer Research’s involvement in surgical trials.  Could they be carried out in a way that each one would be comparable and thereby determine an advancement in treatment?  This is a difficult one as we know that as humans we have different skills and perhaps are better at one thing than another and indeed each patient is different too.

Discussed during the day was also the Genomics England project.  Worth reading and understanding a little more, if you don’t already know about it.

We were given £350m each (in monopoly money!) and asked to consider how we would allocate the funds within the four objective areas.

Those of us with a voice for rare and rarer cancers were also keen to ensure the addition of monies being ringfenced for rare and rarer cancers.  The main reason simply being that the time required to recruit patients or obtain tumour samples takes much longer due to there being fewer of each available.  We wanted to ensure that the funds, although allocated for a project in Year 1, would be available for an extended period of time, should the project not be able to begin until the data had been gathered.

As part of the focus group, we were handed a pack of post-it notes.  On the wall was a series of points which marked the different stages of the research cycle.  We were asked to use the post-it notes to write our concerns, feedback, thoughts, etc on each of these stages and more particularly where we believe patients, carers, advocates should be involved in the discussions AND decisions of Cancer Research’s Strategy and how the monies raised by the public is to be spent.

A terrifically interesting day and I do hope our voices and opinion will be considered and valued by Cancer Research.

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