We were discussing about the role of patient groups in mediating communication between doctors and patients, because patient groups can guide how to deliver the information to the patients and do that based on evidence. Meaning that, for instance at Lymphoma Coalition, we collect data on the patient experience. Every two years we run our global patient survey and we get a lot of information from that about the preferred sources of information for patients...
We were discussing about the role of patient groups in mediating communication between doctors and patients, because patient groups can guide how to deliver the information to the patients and do that based on evidence. Meaning that, for instance at Lymphoma Coalition, we collect data on the patient experience. Every two years we run our global patient survey and we get a lot of information from that about the preferred sources of information for patients. For instance, they always target first doctors. However, they are not satisfied with the amount of information they receive or the time when that information is received. And we can help them to organize the way that information is delivered but also to put emphasis in the outcomes that are relevant for the patients. So they can present the trade-off of the treatments, the benefits versus the adverse effects, and to understand also what it means for the patient, the trade-off between getting a cure or getting a control of the disease versus diminishing quality of life because of that.
We can also help in the way they present the language to translate science into lay language, and also to see the impact that may have on the patient when there are some disruptions in their care, for instance treatment change or when you get outcomes that were not expected and you need to make decisions now about that. We are moving gradually to patient empowerment, patient activation, and more involvement of patients on decision making regarding their care, their treatments, et cetera. But it’s important not only to equip well the patients, which we do, but also to equip better the doctors to understand how to do that in the best way possible so patients can be really empowered enough to get responsibility on their care.