Patient Consultation
We have been facilitating patient consultation for groundbreaking medical research with Oxford Blood Group and Oxford Cancer since 2020, and has proved to be some of the most rewarding work we do.
We do this work because:
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We believe patients should have a voice in decision making about research.
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Asking patients to contribute makes the research more meaningful. It can challenge what the research establishment believes is most important.
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Involving patients means that research will answer questions that matter most to people who live with a particular illness/ condition.
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It also ensures that money dedicated to research is directed at what matters to patients. Most research is funded with public or charitable money; it is only right that all the stakeholders – especially patients – have a stake in decision making.
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A traditional way of asking patients for their opinion is a James Lind Alliance Priority Setting Partnership
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This is expensive (£40,000 +) This is time consuming (1-2 years)
The outcome of this work would be:
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A top 10 of the key priorities that matter most to patients/ carers
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A feedback session to clinicians involved in research in this area
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A report written with the key outcomes raised.
How we usually work:
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We spend time collaborating closely with the charity/ medical research department that are interested in doing patient consultation
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For a Priority Setting session, it is usually two half day sessions on-line, or one whole day session face to face
I have worked with Milly for several years designing and delivering workshops for people with experience of a range of health conditions, including cancers and sickle cell disorder. These sessions frequently involve the sharing of stories that are sensitive and sometimes painful, and there can be potential for conflicting views or distressed participants.
Milly and her team take great care to create a safe and friendly workshop environment, to anticipate difficulty and manage it with care and sensitivity. I am always confident that we are in safe hands and that our participants are well supported.
As a colleague Milly is creative, collaborative, upbeat and uplifting, and she will always have your back. I can't recommend her highly enough!
Dr Catriona Gilmore- Hamilton
(key collaborator and co-designer of our Priority Setting programmes)
