As the name suggests, here at the Scottish Collaboration for Public Health Research and Policy (SCPHRP) we undertake research relevant to the health of the public. We hope, and believe, that the research we undertake is in the public interest. Our success as researchers and as a research organisation relies on our research having impact. Research impact in public health is assessed by the extent to which the research has prompted action to improve the health and wellbeing of the public.
Consequently, we have a self-interest in the public’s interest.
So; how are decisions about whether a piece of research is in the public’s interest made? And is this a fair and unbiased process?
Often in research articles you will find among the small print a ‘conflict of interest’ statement. Within this statement the authors are expected to declare any people or organisations involved with the paper that may have interests which conflict the purpose of the paper. For example, these statements might indicate whether funding was received from a pharmaceutical or tobacco company who might not appreciate results showing that there products were harmful.
With this in mind, I hereby declare my self-interest in the research I undertake: My livelihood relies on my ability to produce research, and I also undertake research on topics on which I have some knowledge and interest.
However, I chose to become a public health academic because I recognised the importance of the topic. It is the hope that my research will help make people healthier and happier which motivates me. So I am juggling self-interest and public interest, which is a difficult equilibrium to maintain – I have no intention of becoming a new Gandhi…
The research I undertake revolves around the use of routinely collected data, the data you hand over to the government and associated professionals and organisations throughout your life. Unlike research collecting primary data, where consent -and therefore the interest of the individual – can be assessed in person, the interests of the individuals concerned with routinely collected data research are not easily assessed.
Currently the Data Protection Act allows research using routinely collected data under strict conditions. In the absence of consent, data can be used if there is what is termed a ‘legitimate interest’. If research is in the public interest or for medical purposes there may be a ‘legitimate interest’ sufficient to permit access to data as long as the data is not being used to support decisions relevant to a specific individual, and is not likely to cause damage or distress. So how do I prove that my research is a ‘legitimate interest’?
When developing a research project, I have to gain a number of different approvals. For example ethics committees, which whether internal to the institution (e.g. university ethics review boards) or broader such as those related to the NHS, ensure that any research is ethical. The body responsible for confirming whether my research is in line with the Data Protection Act is the Public Benefit and Privacy Panel for Health and Social Care (previously the Privacy Advisory Committee). The Public Benefit and Privacy Panel for Health and Social Care acts in the public interest to ensure that my research is of ‘legitimate interest’.
But, who sits on these committees and how did they become members? Well, the membership includes people who are experts in the Data Protection Act and a variety of other relevant fields, but in order to agree to serve on the committee it is likely that the specific individuals also have a self-interest in being a member. They may have noble reasons, such as a belief that it is a way to contribute or return what they have received from research or the NHS. Alternatively, they may believe it will contribute to their career, ‘looks good on your CV’, and therefore their interest may not differ meaningfully from my own vested interest in my research.
As researchers, we meet many other groups, organisations and individuals such as public panels who claim a public interest in our research. However, we have probably all encountered people who use the notion of ‘public interest’ to pursue their own self-interests. In fact even I could be accused of this. Differentiating between public and self-interest is very difficult and requires quite a lot of discipline. We can compare this decision with that of a jury, who have to decide whether the evidence presented to them is sufficient to prove guilt (anyone who has been taught statistical hypothesis testing may be familiar with the courtroom allegory that innocence cannot be proven only accepted in the absence of evidence of guilt). There are a lot of rules and regulations around jurors to ensure that they are unbiased, including the requirement that they swear or affirm to tell the truth (the term jury deriving from the French verb ‘jerur’ to swear/vow). The jury is interested in finding the facts regarding the crime and are selected to have no conflicting self-interests and protected from the public interest.
The challenge facing committees like the Public Benefit and Privacy Panel for Health and Social Care is much greater as they have to decide whether something is in the public’s interest, and yet for the most part we rely on the integrity of the individuals involved to prevent self-interests influencing the decision.
So, I would like to ask whether it is truly possible to ask individuals to deem whether something is in the public interest? Do motives matter in deciding whether a research project is in the public’s interest? Does self-interest matter if it positively contributed to public health? How should researchers and the research community handle people who are purely acting in their own self-interests?
What are your thoughts?
