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Put patients at the heart of medical innovation – Parliamentary Reception

Put patients at the heart of medical innovation – Parliamentary Reception

On Tuesday 25th March the Empower: Access to Medicine campaign were joined by Health Minister Earl Howe, patients, families, campaigners, biotechs and England rugby’s Andy Farrell, for a hugely successful lobby of parliament.

Hearing from parents such as Ruth Le Gal, Alex Johnson and Emily Crossley; alongside GW Pharma chairman, Geoffrey Guy and the Government’s former life sciences adviser, George Freeman MP, a jam-packed Strangers Dining Room explored the barriers and opportunities to earlier access to medicines.

Why were they there?

Patient organisations believe that their voice and engagement would make major, positive changes to priorities at several stages in the medical innovation process.

The announcements of a UK Early Access scheme and an Adaptive Licensing Pilot in Europe are hugely positive steps forward – but there is still more to be done to make the development of medical innovations more responsive to patients' needs.

We are calling on the Government and political parties to unite behind a medical innovation manifesto for patients, to implement a programme that will see patients having a greater voice in their treatment, and to develop more adaptive pathways for clinical research and medical innovation.

The manifesto, produced by the Oxford-UCL Centre for the Advancement of Sustainable Medical Innovation (CASMI) in conjunction with several patient organisations, is supported by Empower: Access to Medicine and Genetic Alliance UK; and a large number of other patient/disease organisations.

The manifesto’s ten point programme proposes progress to be made in a range of areas:

Basic research on the causes of diseases: failure to make progress in many areas results from a lack of understanding of the causes of disease. Investments in disease research need to be more strategic with less duplication and a greater sharing of assets and data.

Benefits sought in new medicines: research is often ‘push’-focused, targeted on what professionals in industry believe are easily measureable performance criteria; patients want a more ‘pull’ orientation, prioritising other, ‘quality of life’ and patient-oriented measures.

Non-drug innovations:  managing patients’ lives in the later stages of disease requires technologies that need to be more actively developed, tested and reimbursed (example: non-invasive ventilation in Motor Neurone Disease).

Clinical research: there is a major opportunity for creating disease registers (with the support of patient organisations, working with Public Health England) and linking these to tissue banks (working with Medical Research Council, Technology Strategy Board etc).

Regulatory benefit/risk assessments: these should take patients’ views much more systematically into account and also reflect the increasing willingness to bear risk as disease progresses and treatment options narrow.

‘Adaptive licensing’/development: this early-access to medicines scheme needs to be progressed imaginatively, addressing unsolved problems, such as how prices can reflect additional value proven after initial conditional licensing. We will watch the EMA pilot with interest.

Reimbursement decisions: regulators and payors should take account of forms of evidence besides classic randomised controlled trials (RCTs) and include factors going beyond the cost/quality-adjusted life year (QALY) to reflect the life situation of the patients and their carers.

Point of diagnosis: better support for clinicians on giving diagnoses and developing the doctor-patient relationship is needed. There also needs to be active encouragement for clinicians to be research active if patient willingness to participate is to be maximised.

Adherence: more research is needed into the psychological factors that lead patients (including those with life limiting diseases) to take inappropriate self-treatment strategies and ‘drug holidays.’

Health Systems' Uptake of Innovation: the challenge will be to create an environment conducive to truly sustainable innovation and service improvement.


  • A most informative afternoon in ‘The Strangers Dining Room’.We were very moved by the speeches made.Our thanks for the support shown by Geoffrey Clinton Brown MP.

    Ann Merchant(South Wales Ataxia UK)

    Ann Merchant 26-03-14 12:37pm

  • It is great to see at last a momentum in the search for effective treatment and trust that this is not a flash in the pan. Having myotubular myopathy for 68 years and not getting any effective treatment I have little hope for a cure in my lifetime but we must bring hope for the children and young adults and government must put its money into research, honeyed words will not work, get rid of the red tape and help with the cost of new drugs

    Pat Haughey 01-04-14 9:37pm

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