At the 14th European Health Forum Gastein (5-8 October 2011), a group of “Young Gasteiners” blogged live from the talks. A selection of their blogs are on the BMJ blogsite.
Apparently many people no longer trust scientists – this may be one of the reasons why educated youngsters are losing interest in studying science. We need to build bridges between science and the public, enabling them to make knowledgeable decisions.
Pharmaceutical companies are in a position to give accurate, key information to consumers. But do they actually do this? It is important to publish in different languages – not just English. The issue of health literacy is important, and leads to the question of whether medical innovation has become more complicated, and hence harder to understand for the general public. Journalists definitely have a role to play in interpreting and putting forward key innovations in understandable, relevant language, and hence increase interest in this field.
A member of the audience asked: “What is being done to address the conflict of interest between funders of studies and scientists?”
The pharmaceutical representative had an interesting reply. The majority of research is funded by pharmaceutical companies, and we should “accept” the role they play. But there are also an increasing number of collaborations with third parties where scientists and funders have the same aim – mainly to find innovations that increase lifespan and save lives. Following this up, the patient representative claimed that all stakeholders should disclose their interest – the only way to handle this, and to generate trust, is full transparency. Patients still have to fight to get access to the same data that physicians have. Patient groups are stepping up from being simple support groups to supplying information and participating in trials.
Catch 22: Patients want to know more, but pharmaceutical companies are very limited in what they can say in order to preserve confidentiality. Patient groups are trusted by patient themselves, yet when they try to collaborate with the industry, this is frowned upon. Patient groups need to be trusted in order to become portals of useful information to patients. I didn’t know there was so much going on in the background of such information exchange. My initial feeling is to agree with the patient groups, but I can see the opposing perspective too.
What is being done by stakeholders to encourage and foster a culture of innovation? How are these ideas being taken up from ground level upwards?
Innovation in healthcare organisation is essential. A member of the audience said: “we need innovation in how to get people to visit their doctor soon or early enough, because otherwise pharmaceutical companies might well produce coca cola bottles for all the good they do.” The other panel members and patient group representative agreed, suggesting that health literacy is key here, while pharmaceutical companies do have a role in providing adequate info because they produce the medication, and probably know more about it than anybody else. Fair enough, but are they objective about the information they disseminate?
In conclusion, the issue of health literacy is important in transmitting the research world’s messages about medical innovation. A new mind set among the next generation of potential scientists needs to be created.
The translational element seems to be missing: there is a lot of innovation, but a lot of it is also sitting on the shelf because researchers are not so good at getting it into practice. Is it simply a matter of not being the right time for that research to receive media attention? Do the media have a role to play in the marketing of medical innovation? Should it even be that instrumental in determining the attention a particular innovation receives, considering how fickle media attention is?
Finally, more collaborative endeavours between the industry and scientists should be encouraged. Most innovation is inherently gradual – HIV treatment is a good example. Within a couple of decades it changed from being a death sentence to a chronic disease that can be controlled.
Daniel Cauchi is a Young Gasteiner.
You can read more blogs from the Young Gasteiners on the BMJ blogsite. The rest can be read on www.ehfg.org/blog