The Patient Manifesto

We have produced The Patient Manifesto in partnership with Genetic Alliance UK and Empower: Access to Medicine, which aims to put patients at the heart of medical innovation.

The Manifesto sets out a 10 point plan which would create an environment where patients would have a greater voice in their treatment, and more adaptive pathways for clinical research would be developed.

Download the Manifesto here (published 2014) and sign the petition in support here

Summary of the Manifesto:

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.

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