Patients are People, Not Robots - Focus on Empowerment, Not Adherence
eyeforpharma speaks with Elena Sainz, owner of the patient education website www.educadies.com, about the need for better patient-pharma communication in Latin America, the do’s and don’ts of interacting with patient communities, and about why ‘adherence’ is her least favourite word.
“In Latin American and Spanish-speaking patient communities today pharma is conspicuous in its absence”
For Elena, pharma companies operating in Latin America are not doing enough to engage one of their crucial stakeholders, the patient. Instead, she says that “in Latin American and Spanish-speaking patient communities today pharma is conspicuous in its absence. This is because these companies are still caught up in the old vertical paradigm, where products are invented and then pushed downstream to the patient. This may be due to internal politics, fear of overstepping regulatory boundaries, or simply unawareness of the conversations that are happening on social media and online patient communities. These companies have a lot of work to do in order to break the vertical paradigm and start thinking horizontally - to do this, pharma must stop viewing patients as “consumers” and start seeing them as partners. After all, pharma marketers will at some point in their lives be patients too.”
Elena thinks that one way pharma companies can demonstrate that they view the patient as a partner, not a consumer, is through a greater inclusion of patients in healthcare summits. “I have seen in other countries that some companies are promoting patient summits; however I have not seen this happening in Latin America so far. Instead, invitations to meetings and summits are often extended to physicians but not to patients. What I would like to see is a healthcare summit where everyone is welcome, where pharma marketers, patients, researchers and physicians can all participate together as equals, and where there can be a free interchange of ideas. Twitter is becoming the primary platform for a collective discussion around healthcare, as seen with hashtags such as #hcsm and #hcsmLA. Unfortunately, so far in Latin America pharma companies have not ventured into this space.”
“Another example of pharma’s negative attitude towards patients in Latin America is their behavior towards the patient speakers they do invite to summits. When pharma organizes an event in order to inform potential customers about a product, they may invite one physician and one patient. Yet while the physician is remunerated for his services, the patient will often be expected to give up his time for free – even though the patient will probably be more valuable in convincing potential customers of the worth of the product. Or the company will expect the patient to become an ambassador for that brand, instead of an independent consultant.”
“Pharma needs to accept that patients are not machines to blindly adhere to their medications, but free human beings”
Considering patient communities, Elena thinks that there is room for pharma companies to participate in them, as long as the company obeys the ground rules of the community. “Everyone who wants to help and learn on an honest, ethical and inclusive basis should be welcome to participate in a patient community. However for a company to be involved purely because of the profit motive is against the spirit of patient communities and their aims, which are to support, educate and motivate their members towards improving health and wellbeing. Pharma should always be aware that their competitors have just as much of a right of entry into an unaffiliated patient group as they do, and they should try and make all patients welcome despite what prescription they are on. Patients would like to be seen as people, and don’t like feeling as if they come with labels and brands attached to them.”
“With a chronic disease such as diabetes, patients need to learn the tools to take care of themselves, and question the options that are available to them”
Once pharma has learned this lesson about its patients, Elena thinks that certain concepts will cease being so important. One of these concepts is ‘adherence.’ Elena, herself a person living with diabetes, experienced first-hand how focussing on adherence without empowering the patient to seek answers for themselves has negative consequences for both patient and pharma. “Pharma needs to accept that patients are not machines to blindly adhere to their medications, but free human beings. After eight years of listening to my doctor and trying to adhere to a medication plan, I found out that the doctor’s advice was outdated and that there were better options out there. I realised that it is the patient’s responsibility to find the right treatment, and instead of being a quiet, obedient and adherent patient I needed to be constantly learning and adjusting. With a chronic disease such as diabetes, patients need to learn the tools to take care of themselves, and question the options that are available to them. After all, it is the patient who must live with the disease, not the pharma company.”
Elena stresses that educating patients about their condition will benefit not just the patient but also pharma companies as well. “If a patient is not encouraged to find out more about their disease and how the treatment works, they may be taking their medication incorrectly. If they feel as if their treatment isn’t working, they are likely to give up on the drug altogether. On the other hand, if you treat patients as people who are capable of understanding perfectly well how their medication works, and educate them accordingly, they will be less likely to make wrong decisions that could influence the effectiveness of their medication. A patient who understands more about how the treatment helps them to stay healthy will experience greater motivation to keep taking it.” In other words, instead of continually stressing adherence, pharma should explore ways of empowering the patient, allowing them to take responsibility over their own healthcare and view themselves as a partner. Elena thinks providing education to patients about their conditions is of vital importance.
“When I first starting having treatment in 1995, access to information on the internet was not available to me. That situation has changed, yet pharma could still do more to reach patients, maybe by sponsoring information packs or online educational material for patients. The most important thing that needs to change, as I have said earlier, is the vertical paradigm which leads pharma to patronise the patient.”
As for her website, Elena has high hopes for the future, her plan being to bring out a range of online educational courses about diabetes. When asked whether she would accept sponsorship from a pharma company to help with funding, she replied that provisionally she would, although “if this were to happen, I would have to stress that this would not make me an ambassador for the company’s brands – I would want to talk freely without the expectation of bias towards the sponsor company.” She is even thinking about including a research element in the courses, which would evaluate what impact patient education has on their health. Elena believes that “when people really learn about their condition, they have a greater opportunity to improve their health. So far there is not a lot of research being done about impact of education on quality of life. There are studies out there linking a certain number of hours of patient education to quantitative measures such as blood glucose level or cholesterol. It would be nice to do research using health indicators that are less geared towards measuring quantitative data and more focused on changes in lifestyle and how people feel about their health.”