Fight the good fight: medical research charity advertising slogans

Over the last few months, I have been noting down charity advertising copy as I go about London. Here are ten. Notice any trends?

Diagnosed with blood cancer, Chloe only has one hope…YOU. Text HOPE…. Anthony Nolan Trust 2013

Elliot is deafblind. He can’t tell it’s Christmas. Text TOY to….Sense

Help us beat cancer sooner – Cancer Research UK cinema advert late 2013

In the fight against cancer every moment counts
Because we’re not just fighting cancer
We’re racing against time
To do more research
To find more cures
To save more lives
One day research will bear cancer
And the sooner you give
the sooner that day will come.
Cancer Research UK Jan 14

We’ve found a cure for blood cancer. Pleased to meet you.
Anthony Nolan Trust

Conquer the London to Brighton Bike Ride
British Heart Foundation (BHF) tube advert jan 14

Cancer doesn’t care if you put this in the bin
(Cancer Research direct mail shot) feb 2nd 14 at home

Because no one should face cancer alone Feb 2014 train poster Macmillan Cancer

These things happen to my mother (‘other people’ crossed out) Breast Cancer CampaignMarch 2014 Warren St tube

I wish I had breast cancer
Newspaper ad – Feb 14 – Pancreatic Cancer Action

Round round get around I get around – Caldicott2, patient data, dementia portal and more!

So sang The Beach Boys who were on Radio 2’s ‘In Concert’ this week.  Not that I’m a great fan but it seemed apposite given my week.  This has involved visits to TrialReach, Oxford (well, virtually!) to discuss plans for public involvement in the Biomedical Research Centre there, my good colleagues at BioMedCentral and, tomorrow, Leeds (see below).  To think I used to spend three weeks every autumn to attend the party conferences.  It’s like regaining a bit of my life again.

But before I get into the meat of this blog, I just thought I’d draw your attention to a presentation on the ‘Caldicott2′ website (this is the review looking at information governance in the NHS including use of patient data for research purposes).  Made by Dame Fiona Caldicott earlier this month it shares some early findings from the review and also shows the next steps for this important piece of work.  Look under the Southern Informatics listing on this page.

I’m off to Leeds tomorrow to speak at an NIHR regional event – the first of four happening over the next few weeks – aimed at strengthening dialogue with NHS Trust R&D Managers against the background of much change in the NHS.  I am looking forward to getting to know this audience better and hope that, during my small walk-on part, I can convey the important role they play in delivering research which will lead to better outcomes for patients.  I think I am erroneously listed as ‘a patient’ on the programme and am wondering whether that means I take on the even more misleading definite article on the day, and am then definitive in every sense of that word thereafter.  Let me worry about that one.

I notice that several organisations have been pushing out their responses to the NHS Commissioning Board Draft Mandate (it being the deadline).  The King’s Fund document is compelling as ever although, as always after reading their documents, I felt a bit as if I should have taken that further degree after all.  It has a strong statement on ‘shared decision-making’ which succinctly conveys what this should be in practice.

The Association of Medical Research Charities (AMRC) has joined forces with other research funders to put in a very comprehensive response focusing on the research and innovation objectives in the Mandate.  Some good ideas in there including the point about better training for NHS staff on research, a point that was also made by Jonathan Sheffield (NIHR Clinical Research Networks) during The Guardian debate on innovation this week.  It’s certainly true that if patients are to see choice become a reality in research we need to do much more to make sure that NHS staff are ‘research-aware.’  Meanwhile I thought Cancer Research UK’s response was helpful about ‘patient choice’ saying (briefly) what needs to happen to make it work and what they might be able to contribute.  I think this is the key – organisations understanding that in this new environment what is pushed from the outside is going to be as, if not more, important, than what is put out from the centre. And I sometimes wonder whether the sense of shared responsibility has quite sunk in in some quarters.

Tangentally you might want to check out the blog I have written about patients and Academic Health Science Networks (AHSNs) for the Greater Manchester (AHSN) website.  Last week at the INVOLVE annual symposium for members it was interesting to hear people talk about their different experiences of working with AHSNs.  Helping support their work in trying to avoid groundhog day in these new organisations, is going to be a focus for the future I suspect.

This afternoon I tweeted about the national portal for people with dementia and their carers to register their interest in taking part in research and be informed about future trials.  It is being developed by DeNDRoN and will be developed shortly.  This really could be the most significant development in helping to nurture a research-active patient community since the Alzheimer’s Society set up QRD in the 90s.  The opportunity of the PM’s Dementia Challenge to give it the best start in life should not be missed and I’m looking forward to chairing the public involvement group that is going to help guide the portal’s development.

Seem to be on the road a lot from next week as well and look forward to meeting people in Birmingham at the next NIHR Regional R&D Day, the Mental Health Research Network (MHRN) conference and other places.  Reminds me I must buy Ben Goldacre’s new book to read on my travels.  And this from the US Federal Drugs Administration today seemed relevant.

New science networks herald more fertile ground for health innovation

If contemplating NHS change rest assured, and this from one who once visited Mt Etna, that the lava does solidify, some old structures do survive, and it is possible for new ones to be built with solid foundations.

Herewith some new and some not so new ‘kids’ on the block in the world of research.

First, great to see that my good colleague and patient advocate, Derek Stewart, has started his own blog and has got off to a predictably brilliant and incisive start with a piece entitled: ‘What I want from research.’   I’ve also listed his site on my blog roll (see below).

The British Heart Foundation (BHF) has a new report out today entitled ‘Clear and Present Data.’   It examines how use of patient data is integral to medical research.  There’s a youtube video available through the above link and BHF have also published the results of a YouGov survey of public opinion on patient data issues.  Suffice to say that this is all part of a significant push by the medical research charity sector on patient data issues – it is, for instance the theme of AMRC’s parliamentary summer reception on 12th July.

The BHF report makes six recommendations including introducing an opt-out system for use of anonymised data in research (already a Government proposal subject to the outcome of a public consultation later this year), and changing the remit of Caldicott Guardians.  Not sure about the last one – I would need to think it through from a patient perspective in the context of a ‘localised’ NHS.   But good to open the debate.  For the results of the survey and an overview it might be easiest to read the guest spot on the Association of Medical Research Charities (AMRC) blog by Joe Clift from BHF. 

A number of BHF’s recommendations are focused on the HRA, so a brief ‘congratulations’ to the excellent Janet Wisely who was recently appointed Chief Executive there and has really taken up the public involvement challenge.

Finally, the entirely new kids on the block are AHSN’s or Academic Health Science Networks.

The Department of Health published a guidance document about their formation on Friday, and potential networks have been asked to submit ‘expressions of interest.’  AHSNs really do represent a significant and positive enhancement in terms of where research meets the NHS.  It is not so much what they are as an entity as what they will bring together in terms of local NHS organisations, academia, industry, providers etc behind a common purpose.  It is also the comprehensiveness of their remit given that they will not just be responsible for the diffusion of innovation but also the promotion of research including trials and public participation.  I suspect more change will ripple outwards.  The Governance arrangements will, however, need to be strengthened with strong public involvement mechanisms.

Perhaps AHSN’s represent new lava flows in research bringing more fertile grounds for growth with them.

 

 

DH and charities reach acoRD over medical research costs

Divvying up the costs of conducting research in the NHS funded by medical research charities is an intricate business.   Who pays for that research nurse, their time in administering the extra treatment required in a clinical trial, the procedures and equipment needed as part of its conduct, the oversight and governance needed to ensure that things are done properly and with patient care uppermost in mind? When do these costs begin and end?

For both the NHS and charities the concern is to be able to demonstrate appropriate use of respective taxpayer or donor funds, for the purpose for which it has been intended; to have a system for the apportionment of costs which recognises the value and contribution of both partners to making trials happen and does not inadvertently disincentivise either because of perceived unfairness.

It is an issue which has been tussled over for a considerable period of time with the latest discussions dating back to well before I left the Association of Medical Research Charities (AMRC).

Happily the Department of Health and AMRC have now reached agreement and the final document – entitled AcoRD for short – can be found on the Department’s website.  The document – which came out late on Friday – takes a principle-based approach and includes case studies to guide decision-makers.

It is an important document.  Consistent and coherent implementation overseen by both will be crucial.  The linkage of the application of the rules so firmly to those charities who have AMRC membership, is an important amplification of the status AMRC now holds in ensuring quality and excellence in the sector.

‘Scroll down’ for clinical trials

To begin with, here’s more on that Pfizer story about use of mobile phone technology etc in clinical trials. It seems to have piqued an interest among many of you anyway.

Also on the subject of clinical trials, I was rather perplexed by this story running out of the NHS Confederation this morning. I’m delighted that the NHS Confederation are at last exercising their PR might in the name of research – it must have something to do with Mike Farrer’s move there as CEO. As you may know, he was previously the chief executive at the North West Strategic Health Authority which led the hallowed ‘NW Exemplar work on clinical trials.

The overall message of the piece about regulation standing in the way of clinical trials is also good. But I am sure the data/evidence they have put forward to support it, passed its sell-by-date a long time ago. If you look at the latest metrics for trials put out by the NIHR Clinical Research Network (CRN) Co-ordinating Centre, one gets an alternative and more up-to-date picture of an improving situation.

Much work is still to be done though.

The really striking bit in yesterday’s MORI survey by the Association of Medical Research Charities (AMRC) was that showing the degree to which patients would be willing to assist in research by participating in trials (72%) or letting researchers access their confidential records (80%). But you have to scroll down the page to see these results.

A bit like we expect patients to ask their GPs to do if they want to turn their willingness to take part in research into action. I am sure I saw an academic paper a few weeks ago which heralded the 39% or equivalent GP practices that were active in recruiting patients for trials in Eastern England. All I could think of was…what about those people living in the catchment areas of the other 61%. Perhaps their GPs still use scrolls instead of prescriptions.

So grist to our mill in making sure the Health and Social Care Bill supports the things that are already being done by NIHR and others to change this.

Budget reaction

UPDATE & FURTHER COMMENT

There’s a very helpful bullet point summary of the budget measures concerning health research on NIHR’s website.

Having only just landed in the office after an afternoon following developments while in and out of meetings, I would add the following to my comment earlier today:

‘Credit where credit is due.  After months of pushing by medical research charities and our partners in health research, one can only applaud the Government for coming forward with a comprehensive set of measures which will ease regulatory issues, speed up the research process and improve transparency. 

I am very pleased that the proposals include a commitment to tackle a number of long-standing issues such as e-health records research.  Also, that political weight is being put behind the need to make information about clinical trials accessible to patients through the UK Clinical Trials Gateway.   This ‘front door’ to research for patients is extraordinarily important if we wish to see the patient population more engaged in health research and participate in trials.

While the headlines will undoubtedly concentrate on eye-catching details such as the creation of a Health Research Agency, I believe that one of the most important steps outlined is that aimed at incentivising research at a local level.  It will help to ensure that the health system begins to work to the advantage of health research.”

George Osborne has announced the 2011 budget, with interesting news for science, and medical research in particular. As trailed, this includes £100 million capital funding for science institutions and measures to make the UK more attractive to small and medium sized enterprises, key members of the life sciences sector.

The growth strategy, published alongside the budget, published alongside the budget, announces plans to act on the Academy of Medical Sciences’ recommendations to improve the regulation of health research in the UK, including establishing a single Health Research Agency to regulate research and working to streamline the process of conducting clinical trials. It also announces action to make patient data safely and securely available for medical research and to establish a Cell Therapy Technology and Innovation Centre.

My first impressions of today’s announcements?

Medical research charities and patients will very much welcome the steps outlined by the government to reduce health research regulation and help clinical trials get off the ground more quickly. They are important steps towards ensuring patients will benefit from future innovations in health and that the UK remains a world leader in research.