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The Web has no doubt changed the involvement of the patients in their treatment. This trend will be even more important in the next 20 years, as the generation not using the web will pass away.
When speaking about serious diseases, like cancer, Rheumatoid arthritis, Lupus, Diabetes, ALS, MS, COPD, genetic disorders, belonging to a patient association is also very important. These associations give huge mental support to their members, and use the web as a scientific resource.
Pharmaceutical companies partner with these associations by funding and supporting scientifically . Influencing recommendations and partnering with these associations can influence reimbursement strategies in many countries.
I ask myself how ethically can these partnerships be controlled? Is it ethical at all?
I think countries need to ensure ethical codes regarding the relationship between patient associations and pharmaceutical companies. No involvement should be tolerated. This is indeed a very delicate issue.
On the other hand, patient should be exposed to the most modern treatment they are entitled to. Not always governments reveal them, just because they are not interested in big expenses these new treatments impose. Where the balance is? Here again the Patient Association has an important role. They should hire independent experts in order not to be influenced by the pharmaceutical industry when taking side.
And what about the pharmaceutical company? Some of the multinational companies developed these days high ethical standards regarding the cooperation, with patient associations, and other should develop as well. Collaboration should be based on extremely high standards, but it is important for all parties.
The industry can help these associations, and they need help, so it can be a win win strategy.
