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Focus arEa 3: PatiEnt involvEmEnt the role for patient involvement in research activities It is right that patients should be involved in helping to shape priorities for research that is publicly funded and improves the relevance, quality and/or speed of that research31–33 . However, it is important to consider what the most appropriate form is for patient and public involvement (PPI) for different types of activities (e.g. basic science versus clinical research) and for different patient groups (e.g. young adults with MS versus people with dementia). Including patients in top level priority-setting in order to close the gap between what researchers want to research, the condition are more likely to work. For clinical trials in neurological and pain conditions, patient participation is which drugs can be assessed, helping pharmaceutical and medical technology companies and payers to understand the true value of a treatment12. EU-wide research programmes such as the Seventh Framework Programme (FP7), and Horizon 2020 encourage but do not mandate PPI. In the UK, a requirement for PPI has become universal for funding applications for translational research and sometimes even for basic research. For example the UK Alzheimer’s Society runs a research network comprising 250 people with dementia and carers who are consulted on all funding proposals, including those for lab-based science, as part of the grant review. At the stage of top-level research prioritisation, the James Lind Alliance facilitates priority setting partnerships that bring together patients, carers and clinicians to prioritise the most important treatment gaps for research. While these and many other examples of good practice exist, there remains considerable variability across Europe as to the extent to which national and charitable funding of research expects or requires PPI.

Benefits and Challenges of Patient and Public Involvement in Research Involving patients and the public can help research in neurological and pain conditions by:

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Helping identify and prioritize the most patient-relevant topics

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Identifying cultural issues that should be taken into account

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Suggesting the best way to get informed consent from patients and/or carers

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Ensuring that information sheets, questionnaires and interview schedules are patient-friendly; helping adapt academic language to make it clearer and culturally-sensitive

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Speeding recruitment by providing researchers with better access to the patient community

» them in a more user-friendly way Involving these patients in research can also bring challenges, including:

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A need to ensure that the full diversity of patients is represented, and not limited by issues such as physical access to venues,

» including a placebo arm in a clinical trial »

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How to appropriately compensate patients without affecting welfare or disability payments

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The Brain, Mind and Pain Book of Evidence  

The Brain, Mind and Pain Book of Evidence  

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