Interview with Elisabet Schesny of the Swedish Breast Cancer Association
Elisabet Schesny is deputy chair of the Swedish Breast Cancer Association (Bröstcancerförbundet), Sweden’s only interest organisation focused solely on breast cancer. The association represents its 11,000 members on the MedTechLabs Patient Advisory.
Hi Elisabeth, what will you be working on during this election year?
– We will be focusing on the demand for equitable care, an issue that is incredibly important to our association. This involves raising issues related to the introduction of methods for individualised screening based on the woman’s risk of developing breast cancer (today, everyone is given the same screening in the mammography programme), the right of all patients to rehabilitation and equitable access to new drugs across Sweden.
What challenges are you aware of regarding new treatments in healthcare?
– Naturally, it is frustrating that it takes so long for new drugs and technologies to reach the health service. It takes a long time for a drug to work its way through FDA approval, then the same process with the European Medicines Agency (EMA) and then finally receive approval here in Sweden. Then there is a problem in that Sweden has so many regional health authorities, each with its own budget, and new treatments and technologies are therefore not made available equitably. It shouldn't matter where in the country one lives. For patients with a serious illness such as breast cancer, this is a matter of life and death.
How can we change that?
– We are promoting the cause of equitable care, as this is an extremely important issue for us. As things stand, regional health authorities prioritise differently and the time it takes for patients to gain access to new treatments can therefore vary. One possibility worth considering is to centralise implementation, but not operational healthcare. A survey conducted by the Swedish Breast Cancer Association showed that only four of ten people with the most common form of breast cancer received treatment conforming to current research and recommendations. We use this example in our advocacy and opinion building work to demonstrate that, in the field of breast cancer, treatment is not equitable.
How can we persuade more people to participate in clinical studies?
– In the present situation, where studies are often conducted in a large, regional hospital, it can prove difficult to recruit widely. One wonders whether clinical studies ought to be national and include multiple hospitals all over the country. Research nurses are based at major hospitals: how can we get more of them into smaller hospitals? Multidisciplinary conferences to discuss patient cases have a role to play in assessing appropriate clinical studies for each patient. Treating physicians are responsible for informing patients. Contact nurses should also be able to inform their patients. Both of these professions need to be well-informed about which clinical studies may be relevant to their patients and what the benefits are for patients who participate a given study. While there is often written information in waiting rooms about clinical studies that are recruiting patients, patients in the waiting room are focused on something else entirely while waiting for their appointment and may well be anxious about what the doctor is going to tell them. And then, information about individual clinical studies can be convoluted when it should be patient-friendly and easy to understand. There are any number of things that patient organisations can contribute to a clinical study, such as insights into anticipated concerns and discomfort regarding certain elements of the study, or helping to ensure that unreasonable demands are not made in terms of how many hospital visits the patient is expected to make to complete the various parts of the study. The participation of patient organisations is often limited to certain areas but, in some cases, it is a matter of more significant involvement in which the patient organisation becomes almost an equal partner. It is also reasonable to discuss the question of whether remuneration for patient organisations that contribute to research projects should be budgeted from day one.
How do you feel about your participation in the MedTechLabs Patient Advisory?
– It has become more common to try and include patient organisations in the research process, as MedTechLabs is doing, and we are delighted to contribute given our resources and opportunities to do so. Patients in general are not particularly well-informed about innovations in medical technology and the implications for them personally; how research is implemented and how high-tech equipment works. It can also be difficult to grasp what an interdisciplinary centre actually does and what it means to have industrial partners as a necessary component. So, I hope that by participating on the Patient Advisory we can exert influence so that our members and other target groups can learn more about what research can mean for breast cancer patients; for example, by encouraging MedTechLabs to inform about its operations in an easily understood manner.
Learn more about the Swedish Breast Cancer Association at brostcancerforbundet.se /