Challenging Expectations of Involvement in Research

Speaking today at Department of Health Sciences, University of York on the topic of challenging expectations of involvement in research. The following notes reflect the content of a number of my slides.


Involving the public in research can be challenging for the researcher, the public and the research itself. 

So, how do we ensure that involving the public is effective and has mutual value?  

The researcher may only want to tick the box, answer the PPI question or help get funding.

The public may want more research in one area, or get the latest information about upcoming studies, or just get better faster

Any meeting between the two may shift and alter the research but this should be to common goals...

• The best and most relevant question,
• Research that is patient centred throughout
• Reference to Incidence and need
• Clarity around the difference it is seeking to make
• Readable lay summaries
• Understandable information
• Appropriate and effective involvement
• A fully costed plan.
• and the answer to where the results will be reported

An agreement (less than half a page) should be sought between the researcher and the public which outlines the following...

Context - e.g. Type of research; part of research cycle; or research organisation

Purpose - e.g. To review a protocol; check the question; be on a study management group

Impact - e.g. To improve the language; to help with the inclusion/exclusion measures

Benefit - e.g. So what x 3 - to the Research; for the researcher; and for the lay person

I have now added some others

Expectations - e.g.Meeting expenses; support, learning and development

Review - e.g. To reflect and capture the impact/benefit

Publish - e.g To record any added value from involvement

The agreement should also state exactly what the research and public can expect from and of each other.

It is only by having such an agreement that we will meet our expectations of each other and make a difference.

There are, regrettably some myths of involving the public which need challenging.

PPI is NOT a distinct and separate activity, an additional burden. It is common sense, simple and should be the driver of the research

You do NOT need to have 2 people on a committee as there are many other effective ways of engaging and involving the public in research

A Reference Group is NOT essential as you could have a series of focus groups or adapt a local patient self-help group

Payment of honoraria is NOT mandatory. Many members of the public will willingly give up their time to help and support research especially at the early stages. IF however you are placing the person in a role on a committee, or as a research partner then payment should be considered.

You do NOT need to start afresh every time you do a new piece of research. You can call upon people who were involved before or just reference what they said

You do NOT need to use same people throughout. You can have a mixed economy of involvement: someone who advises, a focus group then reporting to a different patient community whilst maintaining some contact with then all through a newsletter update.

Involvement does NOT guarantee funding although if done well it might help

The Lancet and Department of Health jointly hosted a Symposium: The Lancet Series on Research: Increasing value, reducing waste

The Symposium was initiated by an article about the issues of increasing value and reducing waste in research by Iain Chalmers, Paul Glasziou et al., in 2009. The paper calculated waste as being as high, in some cases, as 85%.

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The series of papers presented at the Symposium further developed this theme and responded to the following specific areas…

·       Questions relevant to users of research

·       Appropriate research design, conduct and analysis

·       Efficient research regulation and delivery

·       Accessible full research reports

·       Unbiased and usable reports

These issues should equally be of importance to patients, research participants, their families and the public. Each area will help find answers in a speedier, more efficient, appropriate and honest manner. This should subsequently lead to better advice, care, diagnosis, treatment and services.

These are the real challenges we must address whilst also helping researchers develop better research.