“Health literacy is everyone’s responsibility and we all have a role to play”Interview with Ms. Kaisa Immonen, Director of Policy at European Patients’ Forum
MU: One of the topics that has been discussed in the workshop on health literacy was related to Internet search for health-related information. As it has been highlighted, this can lead to information overload for people who might not be able to filter. What are your opinions on this issue and how can it be better managed for the benefit of all those involved?
KI: We have to recognize that, despite the risk you mentioned, access to information relates to a shift in power given to the patient, which can, in turn, result in some medical professionals feeling uncomfortable. For me, in an ideal scenario, doctors and patients would be able to go through the information together during the consultation and engage in a dialogue. If doctors don’t have the time to discuss this information, which is often the case, maybe other professionals, such as nurses trained in patient-centred communication, could do it. We (the EPF) have developed a Patient’s Charter on Patient Empowerment, which consists of 10-point list of fundamental principles of empowerment from a patient perspective. One of those points is: “I am an equal partner in all decisions related to my health”. This is the point where we got some criticism from medical professionals, particularly from countries where the patient-doctor relationship is still fairly paternalistic. I think this is something that the medical profession as a whole needs to come to grips with. People are becoming active and are taking their health in their own hands: they do go online, and they should be encouraged to do so; health professionals need to develop the right interaction and communication skills to reap the benefits.
MU: During the workshop, you were saying that institutional response to the health literacy discussion is inadequate from your perspective. Can you further elaborate on that? How about the trust towards institutions?
KI: On the one hand, science is moving quickly, and on the other, information of varying quality is circulating very quickly on social media. Public institutions are generally trusted by patients, but in this highly “competitive” information environment, I think it is a real challenge for them to make sure that those trusted messages actually reach their audiences. One of the good examples I can mention is the European Medicines Agency, which has been at the forefront of involving patients and consumers in its work. This year, the EMA organised the first workshop on health literacy, but from the regulators’ perspective. We presented the impact of limited health literacy, how people think about benefits and risks, and what is the extent of the things that the regulators need to take into consideration when communicating the regulations to the public. Within the Agency, there is, among other things, a Patient and Consumer Working Party, which advises on all matters relating to interactions with patients and the public.
MU: Do you think that the model of patient engagement from the EMA could be taken up to a national level, by national institutions?
KI: Yes, I do, and I know there is interest from some member states, some have started working on it as well. However, it’s not necessarily directly translatable to every country’s context, so national regulators may need to take inspiration and find what works best in their context – together with their respective patient organisations, of course.
MU: How do you see the role of mainstream media, both in advancing health literacy at a population level and in addressing some situations in which information hasn’t been provided in appropriate manner?
KI: There are several issues involved here. One of them is the fact that the media isn’t geared towards communicating subtleties and uncertainties, and science is all about that. It is a responsibility and a role for the mainstream media to try and capture some of the nuance and not to fall into clickbait headlines. However, this is difficult and requires education of journalists. I know of at least one organization in the UK which is providing scientific briefings for journalists on current hot topics. Those kinds of initiatives are necessary and highly encouraged.
FC: In your opinion, who is responsible for the health literacy? Who should be involved in spreading the health knowledge, and how? It was mentioned that patients should be considered as experts – but how to achieve that?
KI: It’s everyone’s responsibility and we all have a role to play. Patients should indeed be considered as experts in our own state of health. It doesn’t mean that we want to take place of medical or scientific experts; or that only “expert” patients should be allowed to participate. It means that we want our expertise to be recognized as a complementary knowledge gained through lived experience, and that the scientific and experiential knowledge should be valued at the same level. As to what patient organisations can do to promote health literacy: the European Patients’ Forum aims to provide lay-friendly information resources on relevant topics that patients (and everyone else) can use. We also collaborate with others. To take a specific example, we work with the European Centre for Disease Control on the European Antibiotic Awareness Day. We act as a multiplier of their messages. Last year, we contributed to a European guideline for the communication of lay summaries of clinical trial results, together with other stakeholders, to ensure that the summaries that will be published in the EU database respect health literacy and numeracy principles.
FC: What should be the role of industry in communication and health education?
KI: The industry is very good in communication, for obvious reasons. I’d like to see public institutions making communication a priority and adopting some of the skills of commercial bodies to get public health messages across. I think patients should not be automatically directed to a commercial website to get information on a product, or even on a health condition. I would like patients to be directed to an excellent publicly provided information website that has everything in an attractive and interesting format. I think the public sector should learn from the private one in this case.
This interview was conducted by the Young Gasdteinsers Franjo Caic and Marius Ungureanu