Can a patient association be harmful?
Are patient associations really acting in the best interest of those who they represent? How do we know? How does the public, interested in verified, reliable and balanced information know whether to trust these organisations? in-fertility network, involved with many aspects of subfertility and infertility treatment as well as diagnoses related to fertility has a number of important questions and answers, which help you, in a simple way, to get much closer to the truth.
The problems with patient organisations or groups related to highly scientific medical issues, such as for example assisted reproduction are following. One of them dwells in the fact that most of the people involved and advocating for certain procedures or type of treatment or access to medication or number of treatments, its coverage by the insurance, are not professionals in medicine, genetics, biology or any lab activities.
WHO defines empowerment of patients as “a process, through which people gain greater control over decisions and actions affecting their health”. One of the fundamental preconditions of this is the acquisition by patients of sufficient knowledge to be able to engage with their healthcare provider. Empowerment can be defined as “a process, in which patients are given the knowledge and skills by their healthcare provider to perform a task in an environment that recognises and encourages patient participation.”
There are several questions to be asked. Does the medical industry in assisted reproduction welcome (recognise and encourage) “patient involvement”, when it is discussing that it should be forbidden to even see/visit the booths at international exhibitions with this topic? When it is by law forbidden to write or discuss the vast majority of medication used? When it is however, fully acceptable to promote, advertise and communicate the processes, in which this medication and procedures are performed? Who provides the patient representatives with the knowledge and who benefits from the information? Is it important? Of course it is. We base our decision on their information and so it is crucial we know who initiates and makes the decisions and who pays the checks.
Due to the situation in patients groups involved with assisted reproduction, many times individuals or very small volunteer groups, which is even more risky, one of the first projects of in-fertility network is the attempt to put things back on the feet from its head. It is already receiving enormous support from dozens of professionals, specially doctors and scientists in the industry.
At present, the steps, documents, action and publication activities are initiated and paid for by the pharmaceutical industry and clinics, which mostly results in biased campaigns and information. This is very dangerous as in the words of Susannah Rose, Ph.D. the Scientific Director of Research, Office of Patient Experience from Cleveland Clinic: “The government officials and the public are likely to assume that the PAOs (Patient advocacy organisations) are acting independently and without bias in the best interests of the people they represent. When a large portion of an organisation’s funding comes from one source, that donor may have more influence on the organisation — and perhaps more corrupting influence.”
in-fertility stresses the importance of close collaboration with experts, people with necessary professional skills and also personal experience with issues in the fertility as well as diversification of sources, preferably from potentially competing donors or supporters.
If you wish to know the background of the group you seek advice or information from, or which you are about to trust, join the efforts leading to greater transparency, ask for full disclosure of financial relationships of the organisation and search for similarities in communication of the sponsor and the organisation. Are they almost the same?
In order to prevent the conflict of interest, first of all, the patient organisation should decide to limit the amount of funding they receive from the pharmaceutical industry, because not even good intentions immunise your patient group from bias that may harm you.