How can Patient Organization leaders have constructive dialogues with authorities

Of course, increasing interest means increasing opportunities but also increasing responsibility. It is patient advocates’ role and responsibility to bring the patient perspective close to decision makers as this can help find solutions for better health outcomes. To use this opportunity, and to manage this responsibility, patient advocates must bear in mind three absolutely important things they must have a vision, they must be legitimate and they must understand the language of decision-makers.

 

Vision. This means that a patient advocates must be able to tell decision-makers how would they like to see the future of the therapy area represents. They must also be able to know how their therapy area is related to other therapy areas.

Legitimacy. This means that the patient advocates must be perceived by decision-makers and payers as an independent authority and a trusted discussion partner.

Language. This means that the patient advocates must understand how decision-makers think and what language they use. The patient advocate may not want to speak their language but must understand it.

Plus, specialists have identified a series of principles which, if applied, can help PO be more persuasive:

They must be knowledgeable about the main needs unmet yet in their therapy area – both from a clinical and a social perspective.

They must be horizon scanners: they need to know which technologies are upcoming and how they are going to change their therapy area. Horizon scanning makes it possible for the patient advocates to link new technologies to unmet need.

Based on the current unmet needs and the upcoming changes, they must have a clear picture of what their therapy area should look like in different time horizons like in 1 year, 3 years and 5 years.

Based on their 1-year, 3-year and 5-year vision, they must have their priorities defined clearly.

Patient advocates should be an expert: they should have an informed opinion about health care, patient preferences and experiences, their therapy area and other areas connected to their area.

Their organization must be professionally managed, reachable, proactive and responsive. They must mind where their legal seat is and where the phone rings.

They need to secure sustainable and independent funding. They mustn’t let others’ legitimacy issues encroach upon their legitimacy.

They should avoid the multiplication of patient advocacy groups in the same disease area. As soon as competing advocacy groups represent one therapy area, they will not seem credible to decision-makers

Decision makers think about patients as population, not in individuals, this is a way for them to reduce the cognitive dissonance.

Patient advocates need to know when to use emotion and when to use reason, being able to offer empathy and understanding to their partners of conversation.

Patient advocates need to understand how decision makers think and how they decide but their role is not to follow their logic. If the patient advocates is trusted and can understand decision makers mindset and language, patient advocates can point at the limits and weaknesses of their reasoning and they may have the opportunity to reshape it according to patient perspectives and needs.