UK Medical Charities under the microsope

The AMRC Responds...

We report some progress

The AMRC has been in touch and individual replies from charities also confirm that this communication is attracting serious interest even if the majority are ignoring us!

The AMRC has offered to work with 'Charity Watch' and to support our requests for information. This is good news and indeed we will take up their offer and collaborate with them whenever appropriate. However, this gesture, however welcome, does not preclude the response that we need from individual charities. Surely the AMRC cannot speak for the ‘sector’ all the time. We have agreed to send some key questions to the AMRC and when we are ready to send them, they will also be published here. 

Are medical research organisations ‘learning organisations’? A learning charity would be interested in “engaging people in two-way communication rather than preaching from on high”[1]. Staying with this award scheme, we think donors, sponsors and fund-raisers deserve the same treatment as customers, even more so because donors give money with no expectation of reward other than benefits for the common good.

Would it therefore be too far fetched to expect leading medical research charities to offer systematic feedback throughout the year to donors. This should include key messages. I donated money to cancer charities for many years and the only time that I heard from them was when I cancelled my standing order. Do charities benefit from 'donor fragmentation' - where you have millions of small scale donors, is it easy to ignore them all?

A number of charities have started to communicate this information through their websites but it is not clear whether the sites are aimed at lay readers, donors, clients, people with medical conditions supported by the charity or no one in particular.

Charities need to go one step further. They have to address the issues that affect their donors and clients. They have to demonstrate the efficiency of their services. They have to show how they measure their efficiencies.

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[1] As defined by ‘Management Today’ in their Service Excellence Awards for 2006. 

Now add overfed charities to your hit list

Small used to be beautiful

A general analysis of the size of UK based medical research charities should reveal that perhaps 90% of the charities would account for less than 10% of the total annual spend on research and other key activities in the United Kingdom.  This means that 10% of the medical research charities, or the “research juggernauts” would probably account for 90% of spending. The figure could be 80/20 which still makes one fact loud and clear – a few large charities control a disproportionate amount of funding and have an alarming command over influence. Now we all know what happens to juggernauts.

The AMRC used to provide breakdowns of charity research spending in the form of a very useful summary. The analysis seems to have disappeared and the lay members of the public are expected to work out the totals and proportions of research spending by themselves.

A number of concerns about the glitter and ‘packaging’ need to be outlined. These will be followed by a summary of some problems with the ‘contents’, services and visible claims relating to ‘activities’.

For a start the use of the term ‘medical research charities’ is a misnomer. Not all members of the AMRC are primarily involved medical research. Most try to provide a combination of other services as well – advice for clients and patients, services for rehabilitation and treatment, educational services, information and education for coping strategies. Research into prevention and causation is the emotional lure; it’s the money spinner but public funds do find their way into other less advertised activities.

There is a complex dilemma here. What should be the ‘optimal’ size of a medical research charity which also carries out other activities. It is clear that juggernauts like Cancer Research UK are too large to be effective and efficient. While we hope to address this point at some time in the future, Cancer Research UK shows four or five primary areas of work in addition to medical research without stating its core business. If it were to define its core business as research, which requires a complex set of organisational and management skills, then it cannot also offer the suitable skill base that is required for other five stated activities.

There are three scenarios for exploring large juggernaut charities:

·         They have not defined their core business and activities have been added without strategic analysis;

·         They have not evaluated what they are really good at and in order to remain competitive, they are also involved in a ‘service mix’ which must mean loss of value and effectiveness;

·         A charity which tries to pass as a research body, knowledge manager, treatment provider, advice generator and education agency is doing too many things and probably most of them quite badly.

As the information revolution advances and the tasks for managing and disseminating knowledge to various types of interested but critical audiences demands special skills, would it not be a good idea for charity juggernauts to also become more self-critical, respect the value of specialisation and try to become better known as ‘learning organisations’? It would be possible to identify at least 7-8 charity juggernauts that are heading for the cliffs or run the risk of stranding themselves on the beach. We intend to help the public to 'identify' them. Otherwise when they do beach themselves, no one will be able to help them.

If these charities' disproportionate influence is also taken into account, it is the public that is in the best position to stop feeding the charities which are already very obese.

Morality, the Medics and the man called Gordon

No tax please, we're charities!

I  do hope that Gordon Brown is not reading this. I mean the Gordon Brown.

In the unlikely event you are reading this Gordon, so sorry I mean "Mr Brown, Sah!", you have been so generous with donors who have given freely to charitable causes. You have given tax relief and enabled many worthwhile causes to benefit from our great British propensity to give to charitable activities.

But, in the last few years have you not also sought to claim back any unwarranted benefits and given to others who do not even know how to organise themselves as "charities"? You have been equitable and supported community causes. You have been resourceful as a 'giving Chancellor' and not as a grabbing meanie.

I also do not mean to be mean, but Gordon, have you looked at tax relief on charitable donations? Of course the Government wants to see more and more communities taking care of themselves. It also follows that tax relief is a great "bottom up" community developer.

I shudder to think that I have any influence on you but if you are humanly looking for a break from your very taxing schedules, please spare a few minutes every week to read these lines for easy relief.

What does the AMRC think?

What is the role of the Association of Medical Research Charities (AMRC)?

Some of the ‘big questions’ in medical research funding and its accountability to the public still apply today as they did in 1994.

We will be talking again to the AMRC. They appear to have made many successful inroads into the management of research funding on behalf of their members. There is convincing evidence of some meaningful change. Useful examples of various initiatives are reflected on the AMRC website. However, we hope to talk to AMRC’s policymakers and its management. We will offer them the right to reply on behalf of their members if they wish to.

In 1994 many medical research charities were not members of the AMRC. Are there significant numbers of charities who are still not inclined to take up membership of the AMRC even today? Do non-members still wield significant influence? Why do some medical charities opt to remain independent?

Does the AMRC have plans to expand its membership or have they reached a saturation point?

"Top UK Cancer Charity Wastes Public Donations"

Consider this...

That is a charge no cancer charity would ever and potentially want to address, however large or small, powerful or priviledged they may be.

Cancer Research UK's  Consolidated Statement for Financial Activities for the year ended 31 March 2006 also confirms that its total incoming resources amounted to £423m, an increase of £38 million compared to the previous year.

Detailed accounts of activities would of course not find their way into an annual report and accounts. The charity says that it funds over 600 research projects in 42 towns in the UK alone. Other claims tend to leave the lay reader totally overwhelmed with the detail and the scale of its operations. A future post will address the question of scale and size of the charity.

However, a paragraph on page 13 of the report says “ In 2004, we formed the Council Research Strategy Group(CRSG), which is actively reviewing the strategic direction of our entire research portfolio.” The statement goes on to say that the CRSG has undertaken detailed reviews of

-    “The operation and governance of our funding committees

-    The role of our institutes

-    The training and development of young researchers

-    Drug discovery and our clinical centres”……and so on

There is no information on the CRSG on the charity's website.

It would be most useful to find out:

-       What the ‘active review of the charity’s research portfolio’ has found over the last two years.

-       What is the role and remit of the CRSG? How much does it cost to carry out the reviews? Who heads it and what are their credentials? Do its findings get reported to the charity’s Audit Committee?

-       In what way do these reviews differ from other routine investigations connected with probity and accountability?

-       Are the reports of the CRSG available to the general public? As a former donor to cancer research charities, would the writer be entitled to receive a copy?

There are a number of further intriguing questions. Are medical researchers going to carry out the strategic reviews? Can an organisation review its strategic direction when it may not have developed a strategy for research in the past?

It is important to wait for a few answers before we carry on. However, just one more question, if I may? If the largest cancer research charity has only just started to review its strategic direction, what can one say about the other cancer charities which may not have set up strategic reviews? In science, they say one must learn to ask the right questions…..we hope someone will answer them for us.

Key Question for Cancer Charities

A pertinent case

In 1994 we looked briefly into the operations of The Imperial Cancer Research Fund (ICRF) and the Cancer Research Campaign (CRC). We challenged the reasons for the existence of two major research charities possibly working in the same areas of research.  At that time ICRC was spending £53 million on research and CRC was spending £47 million. We proposed a case for a merger of the two charities and we declared our intention to investigate the case for merger.

However, both charities argued against our proposal for a merger. The reasons for their disagreement was not explained but it appeared to be obvious when their representatives spoke out against our suggestions. Unfortunately we have not been able to retain documentary evidence of their angry rejoinders.

Today, the website of Cancer Research UK says it was formed on 4th February 2002 by the merger of The Cancer Research Campaign (CRC) and Imperial Cancer Research Fund (ICRF). 

Our arguments were valid but it appears that the cancer charities vacillated for eight years before a merger was finally agreed. How has the merger helped with the work on cancer? Are there important lessons to be learnt which could benefit other charities where there is similar duplication of research effort, a lack of clarity on distinctive aspects of their research policies and where high cost of central overheads are being funded by the donors and sponsors?

Initial list of charities of special interest

Towards a cultural shift in research management?

In 1994, we identified a number of charities of specific interest. We asked some important questions which were not answered. Some of these questions may need to be rephrased owing to changes in their context. Other lines of enquiry may need to be abandoned but we know that many of our main concerns will be relevant today as they were when we first started our work.

In 1994 the following charities were identified for their special interest to the Charity Watch:

1. Action Research
2. Migraine Trust
3. The Multiple Sclerosis Society
4. Scope
5. British Retinitis Pigmentosa Society
6. LEPRA- The British Leprosy Relief Association
7. International Spinal Research Trust
8. The National Back Pain Association
9. Research into Ageing
10. Breakthrough Breast Cancer
11. Friedreich’s Ataxia Group
12. The major cancer research charities
13. The Foundation for the Study of Infant Cot Deaths.

We invited the above charities to respond to the questions that we had raised. Our requests were ignored. We will be updating our enquiries and raising a number of questions in the near future.

It is important to recognise that some of the above charities may have changed their names or reviewed their research policies. A few charities have also merged and rationalised their operations.

Why medical research charities need a Charter

A Public Charter for Medical Research?

In 1994 we were interested in starting a critical debate relating to the formation of a public charter for medical research. A charter would help to define success criteria and preconditions for good research programme management, generate reliable parameters and propose good practice in the management of research funding. A charter would also encourage open and objective accountability for public funds.

There has been a major change in the availability of research funding. The National Lottery distributors were lobbied by medical research charities and a case was made to access public funds. What was the merit of the charities’ case? How did it comply with regulatory provisions of the lottery funding system? How has the National Lottery supported medical research charities?

In addition, there are key players such as the Medical Research Council (MRC) and organisations within the National Health Service and the Department of Health which also fund medical research. The role and impact of these institutions appears to be significant and must continue. However, does funding leverage work effectively?

There are key questions that need to be answered with regard to:

• The practical challenges relating to the ‘packaging’ and presentation of research proposals,

• Any guidance that may be now available from the AMRC with regard to sharing of costs between donors,

• Any guidance that may be available with regard to accounting for research funding.

• The nature of dialogue with Government which provides funding via its agencies, the MRC, NHS, DoH and other private funders of medical research.

• What lessons have medical research charities learnt during the last 12 years? Perhaps the AMRC is in the best position to explain.

Lets look at the present - that is what matters

Are charities learning from experience?

The following questions need to be explored in detail. They help to understand what was the situation in 1994 when they were first questioned and what is their position today?

1)     Have medical research charities learnt from their experience since 1994? 

To what extent are charities now able to and even willing to articulate their long-term funding priorities as opposed to relying on drip-feed funding?

It is anticipated that many a researcher will say “Ah but, this does not work in our field. This is science, not business”.

Is it also possible that some researchers may prefer not to divulge a funding model which articulates long term needs?  Surely one cannot put donors and sponsors at unease by divulging estimates of increasing funding need?

2)      Will medical research charities be more interested in a principled dialogue today than they were in 1994?

·         It is right to bring these issues back into the public domain and to educate the funder and donor about monitoring and evaluation of research organisations.

·         Demand for donor funding is escalating. The public is interested in supporting other more visible needs. There is increasing competition for funding.

·         The public is more cost conscious and would want to eliminate duplication, waste and unreliable accounting if and when it takes place.

We will propose standard questions for evaluation. We will apply them to selected campaigns for the public’s information. We will keep the public informed and we hope that the charities will respond more openly. We are reviving our belief that A Public Charter for Medical Research has value and that it will engage the public more than ever before.

Call yourself a website expert?

Its your say!

Call yourself a website expert? Vote for the best UK medical research charity website!

Those of you who are website designers and experts at evaluating sites – now is your chance! We are inviting nominations for the best medical research charity website and the worst site in your opinion.

Why does this matter? It does because the website shows how a medical research charity addresses key issues in its communication process. It shows who the charity is addressing in its communications. It also provides a guide to the charity’s interest and commitment to preparing a sound communication platform and the trouble it takes to target information at various users.

The website also shows to a great extent how the charity wants to be seen and how it is interested in being user-friendly.

Where can you find a sample of charities to look at? I suggest that you go straight to the website of the AMRC, the Association of Medical Research Charities and study the charities that are its current members. Please see www.amrc.org.uk or for a list of members please click this link http://www.amrc.org.uk/index.asp?id=3 

Whatever you do and however you decide to evaluate a few sites, you will need to prepare a set of broad questions or criteria. What are your criteria for evaluating the sites of AMRC member websites? If you are impressed with any one of them, please email charitywatch@btinternet.com stating your decision and the criteria. If you identify a poor website, please write in still and also state your criteria.

In the next few weeks, I will nominate my first 'good' site. I will also mention a 'poor' website and in both cases provide my reasons. Open evaluation with clearly defined criteria can only be beneficial to all.