government

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.

Last week Dame Fiona Caldicott published her report on information governance in health and social care (Caldicott2).  Dame Fiona is characteristically down-to-earth in this Guardian interview about the need to get people used to the idea of sharing data if they are to see further benefits from medical research.  You can read the full report here and, in my view, it is sound on the use of patient data for research purposes. It is also good that the Government has asked her to lead the group that will monitor implementation of her recommendations.  They will need a firm but guiding hand that’s for sure.

The fact is that the UK has a whole lot of data – often called ‘Big Data – and the issue is how to get better at using it.

Today the Science Minister, David Willetts MP, opened a new £30M facility in Oxford called ‘The Big Data Institute’ (Do you think that they have signs up for visitors warning them not to bump into the oversize numbers walking through the lobby?).  Earlier in the week he also launched the UK’s four new e-Health Informatics Research Centres (e-HIRCs) and Network at a conference at the Royal College of General Practitioners (RCGP) in its new surroundings.  The four centres will be in Scotland, Wales, the North and London.

Their role: to make health informatics work for medical research and for patient benefit, to enable us to crunch the numbers so to speak and mould them into new pills or new ways of delivering care. They have a HIRCulean task ahead of them!

I was tweeting merrily from the conference on Wednesday afternoon because I was so pleased to hear the head of the Network, Andrew Morris, and the leaders of the four new Centres, Professors Ian Buchan (North), Ronan Lyons (Wales), Harry Hemingway and; Jill Pell (Scotland) all talk about the priority will be given to public involvement and engagement.  The proof will be in the eating of the pudding of course.  The danger for any network is that it becomes introvert and fails to grapple with the practical applications of what it is doing.

During yesterday’s conference proceedings I chaired two workshops.  In each, the question of people having access to their medical records cropped up.  Also how this might hinder or assist in improving the quality off data held about them.  The Government has said that everyone will have online access to their medical records by 2015 and that this is a non-negotiable for the NHS.  But the level of caution and nervousness in some corners of both workshops was palpable.  It is a little like listening to Euro-sceptics.

This is a shame because the UK has so much going for it when it comes to the knowledge, expertise and infrastructure it has developed just to make sense of the increasing amounts of data in our own health and social care system.  This and the very fact of 60 million + people sharing the same health service puts us in a remarkably advantageous position.  If only we could also embrace how patients could be partners in this whole project.  Our US colleagues would love to be able to work with a system such as ours.  However, they more than make up for it with the way they think about the citizen being at the heart of their endeavour.

Professor Sam Their from Harvard University put it best when he urged us to wake up to the fact that health system will be faced with a ‘more technically sophisticated, inquisitive and informed public’ than ever before.

……By the way, this seems as good a moment as any to remind people of the excellent ‘Your health record saves lives’ leaflet which was designed by the UK Clinical Research Collaborations (UKCRC) partners with patients and is available from here.  It explains how people’s medical records are used, gives some case examples of the benefits have come from it and talks about the risks and where you can get more information……

 

I get the feeling that this might not go down well. But I noticed this on the ‘wires’ this evening and you really have to say: ‘why not?’

The New Zealand Government is launching a $1million advertising campaign next month in which the public will be asked to help identify the scientific challenges which should be focused on. The top ten ideas will become part of their National Science Challenges initiative which will receive $60 million over the next four years.

The relatively small amount of money belies the refreshing thinking behind it. It is an idea which raises its head above the parapet here occasionally but I fear we lack the gumption to do it. But we should. (Reverb my thoughts from last week about ‘Science and Society’ – isn’t this just the sort of thing it could be doing?).

You can find the full text of the Prime Minister’s speech at the Global Health Policy Summit in London today here.

David Cameron’s remarks have caught the headlines because of his announcement about the new Phenome Centre.

But, as important, are a number of other areas of his speech. These deal with the importance of the NHS to making research happen, the Government’s commitment to enabling the use of patient data for research including the forthcoming consultation on the NHS Constitution, and his ‘Dementia Challenge.’  If ever we had an insight into his personal priorities for his administration across health research then this speech is a pretty strong synopsis.

In other news today, the Department for Business, Innovation and Skills, announced that Donald Brydon, current Chair of the Royal Mail Group, will be the new Chair of the Medical Research Council (MRC) succeeding Sir John Chisholm in nine months time.

I thought the following interviews might be of general interest.  Both are with recently appointed science leaders.  Both, among other things, major on the need for greater collaboration in research.

Times Higher Educational Supplement (THES) interviews the new President of the Academy of Medical Sciences, Sir John Tooke.

Sir John chaired the discussion panel I was on last week about the health research environment.  I found him very engaged and interested in the discussion around patient and public priorities for research, more than his interview suggests; a sound successor to Sir John Bell in my view.

Also the new EU Chief Scientist, Anne Glover, is interviewed by PublicServiceEurope.com.  She covers an awful lot of ground and there’s a lot about evidence-based policy-making, championing science etc etc.

On the good side it is refreshing to hear from a science leader who seems genuinely interested in the issue of diversity and equality.  I was also interested in her take on GM foods that ’emotion’ had got the better of ‘evidence’ in the debate.  I wouldn’t disagree with that.  But I would hazard a suggestion that this points to the need for a different strategy completely by science than simply ‘parking the evidence’ again as she puts it.

‘Evidence-led emotion perhaps?’

The EU economy might be splintering apart.  But, meanwhile, a number of patient/public/private organisations are ‘euro-zoning’ in on the task of providing better information for patients on medicines development.

The new initiative – which was launched on 1st February – is called the European Patients Academy on Therapeutic Innovation  or EUPATI for short.

Thank goodness they did indeed shorten it to a more palatable – indeed culinary sounding – anagram.  Is it me or is EU-speak and what EU organisations put out completely  indicepherable all of the time?  And isn’t there an irony in that, given the objective?

I’ve not quite disentangled all the bits and bodies behind EUPATI, but the consortium is being led by the European Patients Forum.   EUPATI has its first public conference coming up later this year and has a range of products in its sights including an internet library of resources.

I was sent the news release by a number of good colleagues, and I am taking heart from this that UK patients and patient groups are getting involved.