Unfinished business – clinical research

There has been much to dwell upon since our workshop for member charities ‘Clinical research – working with NIHR’ a fortnight ago.

This is the fourth workshop on clinical research that AMRC has held in as many years.  Each has attracted more delegates than the one before – a fact indicative of the increasing interest among charities in funding clinical trials and studies.  The main difference now – compared to a decade ago – is that we have a system and infrastructure in place to better support their involvement – the National Institute for Health Research (NIHR).

Nonetheless the meeting emerged with some important issues and questions for the future.

Such has been the pace and scale of the changes that have happened under the auspices of NIHR that the ‘how to’ question regularly cropped up in conversation.  NIHR is necessarily a sum of its parts but it is n0t always clear how these parts fit together and relate to one another.  Our members are no different to other funders in needing a journey planner as well as a route planner to help guide them through the complexities.

So, the new National Office for Clinical Research Infrastructure (NOCRI) is an important initiative.  I am pleased that AMRC will be meeting with them in a few short weeks to discuss how they can improve engagement with medical research charities and provide a one-stop shop for guidance and advice.

Since I wrote ‘Not another article about partnership‘ on this site last August and expressed irritation with the system by which NIHR partnership status is awarded (or not) to funders, the Department for Health has instigated a review.  The questions on this topic at the workshop were, therefore, a timely reminder of the need for consistency and transparency in how such decisions are made.

I continue to be concerned that we do not do nearly enough to support research into rare disorders in the UK and this came out in the meeting.  While I can understand the interest in ‘scale’ – i.e. supporting those studies that are based around large patient populations – I sense a growing frustration among member charities who represent people and families coping with rare conditions.

Quite simply they feel that their agenda is being overlooked and I agree with them.  I have blogged before (‘Research of rare quality’ – 7th Sept 2009) on this topic and I hope that AMRC’s seminar in April for rare disorder charities will be an opportunity for this important group plus their colleagues in the sector to rally around some key research issues that we can press together, and press hard.

‘Who pays?’ – whether the charity funder or NHS – in supporting different aspects of supporting clinical has always been a difficult and intricate issue.

New guidance is expected shortly from the Department of Health.  It is intended to clarify existing rules and AMRC, together with a number of member charities, will be meeting with other funders and officials next week to understand better its implications; also to encourage an approach to its implementation and communication which reflects the fundamental contribution of charities to the future of clinical research in the UK.   If we are not to disincentivise some charity funding in this area it is important that this is got right and that potential issues are worked through sooner rather than later.

Yesterday you may have heard the excellent ‘Today‘ programme item about the publication of the MND Association’s manifesto ‘Make MND matter at the General Election.’  Take a look.  It will leave you in no doubt as to the rising sensitivies among charities about ‘bureaucracy and regulatory burdens’ standing in the way of appropriate use of charitable funds.

For, at the end of the day, our first responsibility must always be to our beneficiaries, donors and supporters.  It lies at the root of the sector’s interest in clinical research. It will be the test by which we must always determine our future  involvement.

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