As a representative and advocate for patients worldwide through organisations like Rare Diseases International, what are the key objectives of patient advocates and experts?
I am pleased you have referred to both the patient ombudsmen and patient experts, as we are seeing a significant shift in attitudes towards patients. Ombudsmen are working to persuade decision-makers to implement changes that benefit patients. As advocates, we represent patients, provide expertise on their issues, and offer support. We operate within the system, assisting decision-makers in driving meaningful change.
Patients are increasingly becoming knowledgeable about their finances, medications, and healthcare systems. Unfortunately, they are also well-acquainted with the financial constraints of these services. Our goal is to play a more substantial role within the system. By doing so, we can help drive changes that will benefit not only the healthcare system but also the economy and the environment.
We must go beyond merely advocating for patients; we should also act as experts and partners who learn from the patients’ experiences. Our role involves guiding decision-makers on how to implement sustainable changes that benefit everyone.
In the traditional approach to treatment, patients are often seen as passive recipients rather than active participants. Why is it crucial to elevate their role in the process? Who should we involve at various stages of the decision-making process: during treatment, prescribing, or even reimbursement?
These are indeed challenging questions, but the answer is that patient involvement should occur at all stages to realize the benefits. Consider a typical doctor’s visit: As a patient, I receive recommendations from someone who knows me only superficially, while I have a deep understanding of my own condition. Consequently, some recommendations may be irrelevant or ineffective, especially if similar approaches have failed before. Without allowing patients to actively participate in decision-making, doctors might suggest ineffective treatments, leading to wasted resources. By treating patients as equal partners, doctors can gain valuable insights that enhance the effectiveness of the treatment.
You mentioned reimbursement. In healthcare, it is crucial for patients to clearly articulate their needs, but this often relies on information that may not always align with the best decisions for the healthcare system. For instance, a particular medication might be too costly, and with limited resources, we must decide how to allocate the funds effectively. If patients are not considered as active participants in their care, they may repeatedly insist on certain treatments without considering their overall impact. Only by treating patients as active partners can we determine where to begin, identify viable solutions, and choose the most effective methods based on both their needs and the system’s constraints.
