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Charities should be often seen and loudly heard.

Respected Times columnist, Libby Purves, took aim last week at the campaigning work of charities (see article (pay-wall)).  As did Chris Snowdon, a fellow at the Institute of Economic Affairs (IEA), who wrote this piece in CITYA.M.

Both appear to share a romanticised view of charity in which charities would be better ‘seen and not heard.’  And through a soft-focus lens at that.

The trigger for this attention is that the campaigning work of charities will be encompassed within new legislation being introduced by the Government to codify lobbying generally.  And the charity sector is none too happy about some aspects of the new rules which would seem to be unworkable.

This morning I began to write a list of the campaigns I have been involved in over the last 20 years….disability equality, better mental health services, long-term care costs, the needs of carers…

Not all have been successful.  But some have resulted in social reform that has changed lives and society for the better.

Few of them would have got off the ground let alone got results without the support of charities.  When you hear the Secretary of State for Health spend his weekend calling on employers to change their attitudes to flexible working for carers it is worth remembering that his comments are not a knee-jerk reaction to a one-off event.  They actually follow many years of campaigning by organisations such as Carers UK with Governments of all political persuasions.

Government is only as good as its Opposition.  It is also only as good as the charity sector and others to which it must subject its ideas.  For only through this discourse between them can good policy be formed.

Charity lobbying has changed out of all recognition over the last two decades ago.  In the nineties it was not untypical for medium-sized charities to have one or two campaigns officers.  Nowadays these same charities have sizeable teams focusing on influencing what future public policy should look like.  Even smaller ones are likely to have someone with campaign responsibilities.

But so has the world around us changed.

When I started work in 1992 – as one of the much-maligned charity lobbyists we are hearing so much about today – the fax was the epitome of office technology and many MPs still got their news from a telex machine standing in the corridor.  Government and policy-making is more complex and intricate than ever before and will continue to be so whatever the politicians say.  Despite years of cost efficiency and trimming we still have more Government departments today than in 1992.  In our media, the test-card girl has been replaced by the 24/7 poster-child.

However, we should not under-estimate the strength of feeling and distaste people have – and I think Libby Purves does justice to in her column – about the tone, style and tactics employed by some charities in their fundraising, campaigning and communications.  My suspicion is that more often than not this lack of restraint, of proportionality, is a sign of a deeper disconnect with the public or even their intended beneficiaries.  Therein may lie and even more worrying tale.  Legislation won’t solve it.  Only donors and supporters who are willing to challenge Trustees and withdraw their support if appropriate answers are not forthcoming can.

For me, the challenge when it comes to the specific issue of campaigning as a legitimate activity of charities is the opposite to that set out by Libby Purves.   It also requires a different and more substantive response by charity leaders across the sector as opposed to what seem like the rather arbitrary requirements being proposed in legislation.  For it is about leadership as much as rules and regulations. It is about how to ensure the right relationship between Government and the charity sector.  It is about how to ensure we grow a sector that is committed to doing the right thing.

In the eighties changing Government thinking even at its margins felt like a war of attrition.  Then, successive Labour Governments decided to smother the voluntary sector with contracts and increasingly stultifying consultations.  Today, Government and some charitable organisations appear locked together in a marriage of convenience in which honesty would be the greatest betrayal of each-other’s lack of ambition. No wonder some people have come to the conclusion that the relationship between the state and charity is too close for comfort.

I want charities to be both seen and heard.  Loudly and often.  In fact I would like to believe that charities will always stand up and say ‘enough is enough’ when they need too.  That’s why I first came into the sector.  Perhaps I am just an incurable romantic.

Lock up your charity CEO the Daily Telegraph is coming

The best advice I can give charity Boards of Trustees today is: lock up your chief executive because the Daily Telegraph is after them.

The newspaper known for its successful probing of MP pay and expenses is now taking aim at charity CEOs. Specifically it has gone for the heads of the charities that make up what is known as the Disasters Emergency Committee or DEC. DEC is more often than not heard of in the context of appeals to send aid in response to major intl emergencies. These are put out by the BBC and other broadcasters as you may well know.

I have mixed emotions about this morning’s story. On the one hand I fear that our charities are becoming more like businesses every day, far removed from their founding principles. Is this just another vestige of that trend?

On the other I feel immense frustration that society seems to expect my colleagues working for charities to dress in sackcloth and flagellate themselves every morning. At some point these last few years Britain has gone from a ‘keep up with the Joneses’ mentality (which was bad enough) to that in which we actively covet all that our neighbour until it has been taken away.

In such a febrile atmosphere such campaigns can have unintended and harmful consequences. The outcry over MP expenses was right and proper. But it has also stymied parliament and parliamentarians from receiving the resources they need to serve the nation well.

The head of the Charity Commission, William Shawcross made the only response he could this morning. Charities should be prudent and exercise appropriate controls on pay. Also that this is a matter for charity Boards.

In fact if you are really interested in asking the question of charities about whether they are well run or not then CEO pay is a blunt instrument. Better to examine the composition and behaviour of the Board, how it reflects its beneficiaries interests, how it reports and accounts for this in public.

But that probably sounds too much like hard work to the Daily Telegraph.

Comment piece: New mental health research charity springs from an unlikely quarter #mentalhealth

It has been in the works for a not inconsiderable amount of time.  A slow burner if you like.  So it somehow seems fitting that the first flames should flicker almost unnoticed.

Yesterday, Research Fortnight’s Adam Smith wrote about a new mental health research charity to be launched next year with a hefty £20 million kick-start from the Wellcome Trust.  It’s working title is ‘Insight: Research for Mental Health.’ But  it’s new CEO, Cynthia Joyce, is quoted as saying it is likely to have a different name by the time it hits our high streets.

This is a typically bold strategic move by our largest research charity.  Who would have thought that the Wellcome Trust would one day decide to pump-prime a new charity whose business model will depend on traditional public fundraising?  I suspect that the Trust will have concluded that this is the best route to making an all-round contribution in the area.  For instance, adopting this model is more likely to help raise awareness and de-stigmatise mental health issues than if they had gone the way of a traditional grants programme.

However it is also a strategically important one in terms of the UK’s international standing in mental health research.  For it begins to correct two long-term issues in the field: the need for a stronger and more diverse funding stream and; the lack of a major charity funder that is prepared to both support research as well as advocate for funds and encourage other funders to work alongside it .

There is no doubt that these systemic issues have held us back.  You only have to look at the figures produced by the Association of Medical Research Charities (AMRC) as part of their latest annual review to see how far mental health lags behind many other conditions in funding from UK research charities despite its human cost and the cost to the nation.

For whatever reason, there has been a collective oversight if not reluctance by mental health charities to pro-actively grasp the research agenda notwithstanding a few valiant efforts to change this.  The work of Mental Health Research UK and the Mental Health Foundation are of particular note in this regard.  Overall though, it has been difficult to turn a general acceptance of the need to do more into some sort of positive action, as I found when I was at AMRC.

What has happened in the past no longer deserves our attention.  It is what happens next that matters.

Above all, those who are doing the work – such as our excellent Mental Health Research Network (MHRN) – will be looking to all funders to think and act collaboratively.  Existing charities with their immense knowledge and experience of mental health issues and the needs of their community must act as good hosts.  But the new kid on the block must also act the part of the good guest who brings something different to the part but also has much to learn.   That includes the urgent need to research quality if life issues as much as take forward biomedical research. At least Cynthia Joyce would seem to be making the right sort of noises in yesterday’s piece.

We shall see.

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.

Behavioural matters: pharma could learn its way out of its ‘slump’ by working more closely with patients

I thought this short piece by David Shaywitz in US Forbes Magazine was terrific.

David examines three problems identified by the pharmaceutical industry as holding them back, and proposes solutions to each.  The first seems to follow on neatly from my blog on Saturday which looked at the venture philanthropy tactics being pursued by charities to fill the translational gap in medicines development.  He effectively suggests that this part of the landscape should be left to charities who have a better motivation to pursue it, and pursue it well.

In the second, he says that industry should re-focus its thinking and spending so that it’s not just investing in the science but putting effort into helping patients get more value from their medicines.  That means, as he says, more upstream involvement of patients in product development to ensure its outcome better reflects patient experience and the choices and behaviours they will make when managing their condition.

The third is about regulation and red tape…..  I quite liked his arguments about how the cautious behaviours of pharma are caused by an inflated perception of risk and obstacle.  I had the same thought in my car the other day.  It has those little beepers that tell you how close you are to things when reversing or parking.  I listen to those things far more than I should and my parking skills have taken a real nose-dive.  Anyone know how to turn them off?

Spirit of ad-venture shown by charities in funding drug research or a sign of desperate times?

From The Economist in New York, a short but interesting piece on the growing collaboration between charities, pharmaceutical and biotech companies in the US to bring new drugs to market.  More specifically it looks at the ‘venture philanthropy’ model being adopted by charities there to support clinical trials.  I’m not quite sure I’d characterise it as the ‘desparate’ lunge that the journal suggests, more an evolution in behaviour engendered by many factors; austerity and costs are just two.  It is also a quite deliberate and strategic move to foster innovation on their part.

We are seeing the same pattern emerge here in the UK.  In just the past month we have seen our two largest medical research charities both announce ‘venture philanthropy-like’ initiatives – Cancer Research UK and the Wellcome Trust - to boost drug development and fill the ‘translational gap’ as it is often termed.  ['Scope' have also announced something similar in the disability area.]

This is on top of what UK medical research charities are already doing to support clinical trials. If you want to understand more about venture philanthropy you might want to look at PhilanthropyUK’s website and this article in particular which talks about some of the areas in which venture philanthropy activity is growing – medical research being one of them.

The brute reality though is that I think this is a strategy really only viable for the larger charities who have the funds to invest.  But I would be interested to know whether the criteria they are adopting for investment decisions encompass the possibility of putting money into ideas being generated by other charities who do not have the scale to take them further?  I don’t see why not.  That could be a potentially important stimulant to greater collaboration between charities.  Or perhaps I have just got the wrong end of the stick, although surely it’s about investing in, rather than the provenance of, the idea.

Meanwhile PatientView has published the latest in its surveys of global patient group opinion about industry – this time it’s the turn of medical devices companies to come under the spotlight. In reputational terms, this sector within industry comes ahead of pharmaceuticals and biotechs in how well they are rated generally, but share the same dismal record in terms of ethical marketing.

This ahead of the annual conference of the Association of the British Pharmaceutical Industry (ABPI) in London later this week entitled ‘Can we afford innovation in medicine?’

Have charities really put the brakes on public involvement in research?

I was pulled-over by the police on the M25 on Sunday night.  Unbeknown to me, my car brake lights had failed so that they were permanently on.  Quite apart from blinding any traffic on my tail, an unwitting driver could easily have mis-read my intentions with who knows what consequences.  Thankfully that didn’t happen.  And by the way, thanks to the AA man who repaired them.

A few weeks ago, the Association of Medical Research Charities (AMRC) published an excellent report of the five-year audit they have done of the Association’s 125 members and their peer review practices.  You can download it from their website here. It shows that UK medical research charities are as committed as ever to independent external review of their science.  And it is this sector-wide commitment to peer review – to almost the exclusion of all other factors – which locks them into the prevailing consensus on the pursuit of science in the UK.  For better of for worse.

But there is a statistic in the report that troubles.  This shows that the number of charities that use lay people in peer review (49%) is very similar in 2011/12 to that (53%) of the previous previous audit completed in 2006/7.  Have charities really become static on public involvement or am I just not seeing through the static?

Now, we have to be a bit careful here because I know from colleagues that the story behind the numbers today is quite different to what it was then.  Five years ago charities tended to simply stick lay people on panels, count this as involvement and forget about them.  Nowadays – as AMRC’s report and other documents it has produced shows – the role and contribution of lay people is better facilitated and richer as a result, from separate panels feeding into peer review, to developing research strategy not to mention contributing to research dissemination.  AMRC’s science communication awards also bear witness to this.

But I am not going to let my beloved sector off the hook completely: there are other indicators that paint charities in a disappointing light when it comes to public involvement.  For, even with the silver lining portrayed above, the figures in successive AMRC peer review audits indicate that around half of medical research charities do not involve the public in the way they decide how to apportion donor or supporter money to research.  Go figure.

The recent INVOLVE/National Research Ethics Service (NRES) report on public involvement in grant applications also showed that, of those funded by charities, about one third included no public involvement and about another third had ‘ticked’ various public involvement activities as part of their study but were unable to confirm what this was in free text.  In my view charities should be at the top of the leader board, way ahead of the current front-runner in the INVOLVE/NRES study which is the National Institute for Health Research (NIHR).

I also know from my work with NIHR’s clinical research networks – and local research networks in particular – that charities are certainly ready and eager to fund clinical trials or studies.  But they can be less engaged in the equally vital task of securing patient and public involvement in trials, and in recruiting patients when trials open.

This whole area deserves deeper inquiry to find out what the true story is.  But my hunch is that a core of  charities, enlightened about their relationship with their public, have simply got even better at the task of involvement.  Too many, however, continue to tiptoe nervously around the subject.  Others just refuse to play ball for one uncharitable reason or another.  This does science and the public a disservice.

With ever greater scrutiny of their role in society, charities must constantly demonstrate and not just advertise their unique ‘copyright’ over public support for research in this country.  By involving their beneficiaries they can perform an important pseudo-regulatory role in ensuring that the way in which science is conducted – as well as what it chooses to focus on – ‘protects and promotes the public interest.’  Their supporters prove time and time again to be the best at getting the message across to fellow patients, clinicans and researchers.  But most of all public involvement is a fundamental part of the charity genome: it is the impulse that urges us forward to question, to innovate, to never accept the consensus.

Don’t get me wrong, I think the charity sector is one of our greatest strengths in UK health research.  That doesn’t mean though that on some things I don’t think we can do better, much better.

But perhaps I just can’t see past those faulty brake lights.

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