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PAGE 1 - AMRC SURVEY ON PATIENT VOICE

 
 25% of survey complete.
Patient voice is seen by many as being an important part of medical research, whether this is associated with policy issues like the use of patient data or genome editing, or funding issues like developing a research strategy or assessing feasibility. As part of our new strategic plan, we are keen to understand how our members consider patient voice. To kick this off, we would like to find out how you are collecting, storing and using information on patient voice. We understand that your approach may be different to other charities and will be influenced by the type of research you fund. With this in mind, we would be very grateful if you could spare some time to tell us about how you do this in your charity. 

The survey has 17 questions and shouldn’t take more than 20 minutes to complete. We would be grateful if you could submit your answers by 31st March 2016. All information will be held in confidence, and used to develop aggregate data. We will also ask you if we can use examples you provide as case studies for future work.

Any questions? Please contact Dr Andy Clempson on a.clempson@amrc.org.uk or telephone 020 7685 2632.

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1. Charity name

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2. Contact person

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3. Email

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4. By patient voice, we mean all activities that seek the views of patients and their families in the diagnosis, management and treatment of diseases and long term conditions. For the purposes of this survey, this also encapsulates the views of care givers, the wider public and healthcare professionals.

Is this how you would describe patient voice? How do you think patient voice has been understood in the patient and medical research communities up to now?

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5. In order to shape your charity's priorities and activities, do you undertake initiatives to help you better understand the needs of patients?

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6. Please describe these initiatives below. What made your charity undertake them? Are they relatively new things (resulting from changes your charity has made in the past 12-24 months) or have you always done them? If you don’t undertake any initiatives, please tell us why.

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