It’s the Budget tomorrow.
You young’uns never had it so good being able to get all the stuff on-line when the Chancellor of the Exchequer sits down following his Commons statement. As a researcher for a political lobbying firm twenty years ago I used to have to queue at the Treasury for what they called the ‘Budget Bundle.’ In all weathers. Then race back to the office, photocopy it umpteen times, and send relevant bits to clients by fax. Aye it was tough in them days.
I suspect the usual ritual will apply to science tomorrow. Chancellor makes announcement. Lots of positive reactions during the first hour. Then a pause as people crunch the numbers. Followed by early evening outrage as everyone realises what extra cash has been announced, has gone to ‘The Crick.’ Again. In a real-life case of robbing Peter (well, there must be a Peter somewhere in science) to pay Sir Paul.
By the way it’s good to see ‘The Crick’ rising so quickly in North London. I think the first building is almost complete save for the helipads. Tomorrow’s significant science infrastructure project however is likely to be the building of a monorail from ‘The Crick’ to the office of the new Government Chief Scientist in Whitehall. Branch lines to Cancer Research UK and the MRC will follow. The rest of us will walk.
Forgive me. Here comes the serious bit. If I were Chancellor of the Exchequer these are the six things I would do tomorrow to boost citizen participation in health research:
1. PPI Compensation Act: Make it a requirement that all patients and the public involved in the design and delivery of publicly funded research (including those research projects involving a mix of funders) are compensated for their time, insight and expenses according to INVOLVE guidelines. They would not lose any benefits entitlements as a result of this.
2. Fare Travel for for Fair Research: All participants in research and their ‘carers’ will be entitled to free public transport when travelling to and from appointments as part of a clinical trial. Those travelling using personal vehicles will be entitled to free parking at hospital sites.
3. Employment law will be amended so that employers must give employees time off to take part in clinical trials or to support a loved-one in a clinical trial.
4. Choice: Under the NHS Constitution patients will have the right to choose to be cared for in a hospital that runs high quality clinical trials and studies. No GP can stand in their way.
5. The Government will set up ‘Innovation Gyms’ in each Academic Health Science Network (AHSN) area in England; fifteen in all. The gyms will be run by partnerships of patients, patient groups and local voluntary organisations and gyms to develop innovations for better health and social care. AHSNs will be assessed and their future work incentivised based on the evidence they are able to provide that they have supported the development and diffusion of citizen ideas emerging from Innovation Gyms. All profits will be ploughed back into the Innovation Gyms.
6. A windfall tax will be applied to the Science Academies with the funds being used to establish an Academy for Public Involvement and Understanding in Science. Robert Winston will not be its Chair.
Oh, and there is a seventh…
7. The Royal Institution will be saved (well, every good Budget has something for everyone).
Simon Denegri's Lay Review 
I echo this entirely. In fact I would go further in respect of the PPI Engagement Law and extend it beyond involvement in research to include all of the various tasks we involved patients undertake to enable
the NHS and other public bodies to do their work. I am struck by the demographic of the PPI “commmunity” How can I put this? “The under sixties are currently under represented in this field” as are those from the so-called “hard to reach” (of which I am one apparently) groups. Of course this is largely because people cannot get time off work and so inevitably the well-meaning retired are more likely to be able and wiling to undertake this work. The Benefits issue is a major problem. I am aware I tread a very thin line indeed but choose to take the risk because of passionate commitment to meaningful involvement. If the powers that be are fully convinced of their own rhetoric about co Production/co commissioning/co design etc. there needs to be some serious work done to remove the obstacles to a more diverse range of people becoming involved.
See you at the CLAHRC for NWL Learning Event in April. I am one of two “patient leaders” on this year’s Fellowship. Well done CLAHRC for taking the risk!
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