Event Review: All-Party Parliamentary Group on Medical Research Summer Reception

Here's an idea - what if the key to improved treatment of some of the most
problematic medical conditions lay buried in a vast mass of patient data siloed
in archaic computer systems? What if researchers couldn't get to it thanks to
an impenetrable cat's cradle of red tape?

Well, dispense with the what ifs, because that's what the All Party
Parliamentary Group (APPG) on Medical Research say is happening, and they want
to stop it. Their summer reception was dedicated to 'How data saves lives -
unlocking the research potential of information'.

All well and good. But the APPG is comprised of parliamentarians, so are
they lobbying themselves for new legislation? BioNews, I'm afraid, invited
a medic who is a complete political naïf to attend this event for them - I was
surprised to learn that some special interest groups have apparently lobbied
some APPGs so hard that they are now embedded within. Everyone makes common
cause, not at all how I thought it worked.

The APPG on Medical Research is accordingly supported by the medical
charity big guns: Cancer Research UK; Wellcome Trust; The Academy of Medical
Sciences; Medical Research Council; and the Association of Medical Research Charities.

So, then, confessions of a political naïf, part one - I'd never been inside
the Houses of Parliament before, much less the august Members' Dining Room, the
venue for this event.

The scene, I can report, was one of a dinner party in some grand old stately
home. A hubbub of conversation ebbed and flowed, punctuated by the occasional
clink of wine glass on wine glass. Chandeliers hung overhead and along one side
of the room lay The Spread of the Gods: pink profiteroles; the creamiest tarts;
the daintiest cupcakes; possibly every species of patisserie known to man. 'You'll
have to have them all pulled out', sang my inner George Harrison, 'after the
Savoy Truffle'.

APPG member Lord Willis of Knaresborough opened the speeches and got my mind
back to business. He introduced the idea of the NHS being 'research-led' (which, however well intentioned, set my teeth on edge; 'patient-centred',
'outcomes-focused' — how many buzzword constructs can one health service
survive?) and discussed the creation of a NHS database to support medical and
health research.

Professor Nic Jones, Cancer Research UK's chief scientist, built the data
theme up further. About a quarter of medical research is reliant on patient
data, he said. The current web of legislation means that researchers have to
apply to several different bodies, who can give conflicting advice, before (if
they're lucky) being granted access to data.

But a speech by a man called Anthony Cox was the most effective. Cox is in
his seventies and has Parkinson's disease, a condition where all current
treatments are inadequate.

He was articulate and witty. Researchers are seeking improved access to
anonymised patient data, but some people are still concerned for patient-doctor
confidentiality. Not Cox, who imagined a visit to a GP's. To a packed waiting
room, a receptionist would call out: 'Mr Cox! The erectile dysfunction nurse is
ready to see you!' True enough - the safeguards for data anonymity put in place
for researchers would likely not be infallible but should still be better than
is often the case in the NHS.

By contrast, Earl Howe, under-secretary of state for health, was -
understandably - much more on-message. My notes show references to an 'unrivalled
health research system'; to the UK being a 'place of choice for investment'; to
things being of benefit 'to patients, the NHS and to the national economy'.

The poster presentations were more substantive: 16 pieces of research, all
data-themed in some way. There was much work on currently incurable diseases
like Alzheimer's or multiple sclerosis. Most of these were epidemiological
studies, involving large cohorts of patients, trying to discover contributing
lifestyle factors.

Other presentations focused on the benefits of improved data access or on
initiatives like UK Biobank, a collection of anonymised patient data from
500,000 men and women which can be accessed on request by researchers (reported
in BioNews 651).

Clearly, in research, data is hot at the moment. In fact, many of the ideas
bandied about at the reception are coming into force: the Health Research
Authority was born at the end of 2011 to simplify the process for researchers
seeking to access data; the Government will soon begin a public consultation on
whether, unless patients choose to opt out, all patient notes should be
funnelled into an anonymised data resource for use in approved research.

Don't get me wrong — I like most, perhaps all, of this. But the air around
data access still smells of hype to me. The NHS has a painful history when it
comes to IT management. I shudder to think of the cost and complexity involved
in creating one gigantic anonymised database. As a doctor, I wondered how much
extra time I'd have to spend inputting notes and ticking more boxes.

And then, for what? Epidemiological research would get a boost, for sure,
but medical science cannot live by epidemiology alone. It's hard to see how the
great improvements in treatment hinted at here would actually come to light.

In hospital-based medicine it's the little things that count. By that I mean
like staying vigilant on seeing the thousandth screaming, feverish baby because
this time it just might be meningitis; like listening to patients when they
disagree with you because despite all your clever-clogs medical training you
can still be wrong; like being bold enough to question a colleague's diagnosis.

But paying attention to these matters - clinical governance, in medicalese -
is not as sexy as swish computer systems or promises of bleeding-edge medical
research. It probably wouldn't make the UK 'a place of choice for investment'.
But it's a surer route to improved patient care than anything presented here.

Again, don't get me wrong - I don't doubt that some good may come of the
push for data access and I don't begrudge the medical research lobbyists their
success. All the same, I left the summer reception feeling sceptical about much
that I'd heard.