Anything that increases the transparency of the relationships between all of the stakeholders, be it doctors, scientists or patient representatives should be applauded.
The principle should be that a disclosure of interests is essential to the creation and sustainability of trust in the healthcare sector. If everything that comes from interactions between interested parties is placed within the public domain then it can be seen and understood. By contrast, anything that is hidden away from public view would offer scope for conspiracy theories and an array of possibly ill-founded assumptions as to why people are doing or saying specific things.
For me there should be a common standard of transparency for everybody who is engaged in contractual relationships with the pharmaceutical industry. So the level of transparency relating to doctors or scientists should be equivalent to that which is applied currently to patient organisations and individual patients: if we have a financial relationship as Genetic Alliance UK with a particular pharma company, that is a matter of public record. This relationship is disclosed on our website and is also disclosed in our annual accounts. It is also disclosed by the pharma company as part of its compliance with the EFPIA code of practice.
Similarly, if I receive payment, whether it is reimbursement of travel, expenses to attend a meeting, or an honorarium or fee, that then becomes a matter of public record. So anybody who wants to see any potential conflicts of interest I may have can find out very easily.
I don’t have a problem with that; I think it is only fair and proper. If I am being paid to give a talk, it is only fair that people should know that I am receiving a fee or getting my expenses paid for this.
What I don’t think though, is that people should make a fetish about accepting payment from industry. People that work for pharmaceutical companies – the vast majority of them, as far as I am aware – don’t do it for nothing: they draw a salary. We all think it’s reasonable that people should be paid for the work they do.
If industry engages with an academic, a clinician, a scientist, or a regulatory affairs person, and asked them to undertake a piece of work, just as they would pay a member of their own staff for it, there is no reason why they wouldn’t pay an external contributor, to secure the services or the knowledge or information that they are not able to produce in-house. It is a straight forward fee-for-service.
If you were selling toilet paper to GSK, Novartis, Roche or whoever– as somebody must do – you’d expect to get paid for it. So if you are selling expertise and knowledge to a pharmaceutical company, it is clear that to them it has some inherent value. There is no reason why you should be necessarily altruistic in giving away your insights to a company which is then going to use it in order to create a therapy that will ultimately turn a profit.
So is there an actual patient benefit from the publishing of value transfers between pharmaceutical companies and healthcare professionals?
The honest answer is that there is no immediate, direct patient benefit. Ultimately, though, there is an indirect patient benefit that would come from the industry being able to engage with the relevant skilled professionals, whether they are doctors or other clinical experts, in order to insure that the products they develop are as fit for purpose as they can be.
Disclosure gives confidence that everything in the relationship is above board, in the open and that there are no secret arrangements that might give cause for concern. If it is seen as a perfectly normal thing to do and is that in the public domain, then there can be no suspicion attached to it.
In the vast majority of cases the fees paid to individuals are relatively modest. Some people do get larger sums in return for the services they provide, but the last time I looked, the industry was not in the habit of dispersing vast wodges of cash to doctors or scientist or anybody else just because they are nice.
Being transparent about things will allow for the recognition of proportionality.
So are there any potential pitfalls on the horizon? Well, at first, I think that healthcare professionals might feel concerned about having their financial information placed in the public domain, because they may regard this as private information that is their business and nobody else’s.
As disclosure becomes more common, people will get used to it. The advantages of transparency will outweigh any negative issues and frankly, if people don’t want to have their relationship and their potential conflicts of interest known, well then you have to ask: why not?
About the author
Alastair Kent OBE is the Director of Genetic Alliance UK – the national charity of over 150 patient organisations, supporting all those affected by genetic conditions. Genetic Alliance UK’s mission is to promote the development of the scientific understanding of genetics and the part that genetic factors play in health and disease, and to see the speedy transfer of this new knowledge into improved services and support for patients.
Alastair is also the Chair of Rare Disease UK (RDUK) the national alliance for people with rare diseases and all who support them. RDUK has over 1,200 members including over 220 patient organisations, health professionals, researchers, the pharmaceutical industry and individual patients and families.
Alastair has worked in the field of genetic and rare disease healthcare for over 20 years. Alastair represents the interests of patients on numerous platforms; he is the president of the European Genetic Alliances Network (EGAN), Immediate Past Chair of the European Platform for Patient Organisations, Science and Industry (EPPOSI) and the EU Committee of Experts on Rare Diseases amongst others. He has previously been a member of the Orphan Medicinal Products Committee and Committee for Advanced Therapies at the European Medicines Agency and a member of the Human Genetics Commission.