The Importance of Patient Involvement – and How to Get It Right

It might seem strange that I feel the need to write about this now, when it's such a trendy idea in medicine in this country, but just because something is trendy doesn't mean it's being done for the right reasons ? or in the right way. Patient involvement (or service user involvement, if you prefer), like patient centred care (or person centred care), is something people find easy to agree with. At least, they agree with the principle. Of course patients should be at the centre of their own care; care is about them, and should be focussed on them and their needs. Of course patients should be involved in planning, in policy, even in ongoing management; how else can we get a clear idea of patients' needs and how they will be affected? There are ways and ways of doing these things, and different reasons for doing them, that affect how much impact they can have. Sometimes the choice of terms, as with the alternatives mentioned above, reflect differences in attitude and approach; sometimes they reflect an intent to create a certain impression, rather than reflect a real difference. I've known people who served as patient representatives on their local Clinical Commissioning Group. I've served on NICE committees, and been involved in other projects, with the brief of representing the patient point-of-view. I know other people involved in patient involvement and patient advocacy in any number of ways, as well as people involved in representing the views and needs of disabled people in various contexts. It's a complex area that can be done well, and can be done badly. I'm going to explain why it's important to be done right, and some of the things to do (and to avoid) to get it right.

About Robert Zinn

Robert Zinn, M.D., Ph.D. is a medical doctor, physician, and web entrepreneur, who, for over 15 years was employed by academic and research institutions and focused his clinical practices on very specialized patient populations, such as those with rare genetic diseases or rare cancers. He shares his knowledge through his website,

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