Research ethics is usually about protecting research subjects. It boils down to this: you can’t advance knowledge (which ultimately will help many) by hurting the people involved in a study.

Infamous research crimes include Josef Mengele’s experiments on prisoners in Nazi concentration camps and the Tuskegee Study in which science mutely observed the progression of untreated syphilis in African American sharecroppers.

As a result of those and other inhumanities, the US, the UK and many other countries now have strict guidelines on how research subjects should be treated. But is that all we owe to them – that they are not harmed? Might they also deserve some say in what is studied and how? These are among the questions posed by a group of UK health researchers in a recent article in Health Expectations.

All of the researchers from the Social Science Research Unit, Institute of Education, University of London, had been involved in some type of venture that tried to involve patients in research. They also reviewed publications that described similar activity.

They found that when researchers involve patients in a study, they generally did it by consulting them on the central healthcare issue or by collaborating with them in the research process.

A third, less common form of involvement was in “lay-controlled” studies initiated and conducted by patients themselves with less participation from health care professionals or researchers.

The team also noted that researchers concerned about patient involvement often invited individuals or groups of patients to help guide their research. In other cases, researchers simply responded to patients who voiced concerns on their own initiative.

Very little is known about which types of approaches work best under which conditions. Hence in part the systematic review and proposals for a conceptual framework which have been the principal result.

Then framework takes into account factors such as the people initiating the involvement, the degree of public involvement and the forum for exchange. It also considers context (in terms of the research focus and the historical, geographical or institutional setting), and the theoretical basis.

• Summary of “A Multidimensional Conceptual Framework For Analysing Public Involvement In Health Services Research” by Sandy R. Oliver, Rebecca W. Rees, Lorna Clarke-Jones, Ruairidh Milne, Ann R. Oakley, John Gabbay, Ken Stein, Phyll Buchanan, and Gill Gyte in Health Expectations, 2008, Volume 11, Number 1, pp 72-84.