The importance of the patient voice in vaccination and vaccine safety—are we listening?

Abstract

Much has been written about the patient-physician relationship over the years. This relationship is essential in maintaining trust in the complex arena of modern diagnostic techniques, treatment and prevention, including vaccines and vaccine safety. However, a great deal of this material was written from the viewpoint of clinicians and academics. The patient voice may be positive or negative, fragmented or complex. Information sources are weighed and treated differently, according to the value system and risk perceptions of the individual. In post-trust societies, when people have less confidence in health authorities, communication needs to be more than a paternalistic top-down process. Notions of empowerment and individual patient choice are becoming crucial in medical care. The 'voice of the patient', which includes healthy individuals receiving vaccines, needs to be heard, considered and addressed. With respect to childhood immunizations, this will be the voice of the parent or caregiver. The key to addressing any concerns could be to listen more and to develop a communication style that is trust-based and science-informed. Regulatory agencies are encouraging clinical and patient-reported outcomes research under the umbrella of personalized medicine, and this is an important step forward. This paper attempts to reflect the paradigm shift towards increasing attention to the patient voice in vaccination and vaccine safety.

Decision-making on maternal pertussis vaccination among women in a vaccine-hesitant religious group: Stages and needs

“…The hesitance towards vaccination in general and maternal pertussis vaccination in particular underlines the importance of shaping the decision-making process in such a way that the information and decision support needs of vaccine-hesitant parents are taken into account [23][24][25]. Hitherto, however, little is known about vaccine-hesitant parents' needs regarding decision-making on maternal pertussis vaccination [11,[26][27][28].…”

Advancing challenges in Paediatric Virology: An interview with Professor Barbara A. Rath, Co‑founder and Chair of the Vienna Vaccine Safety Initiative

“…We cannot approach parents' concerns with a ‘one serves-all approach’. Ideally, vaccine consultations should be provided by well-trained healthcare professionals, who are both knowledgeable about the topic and willing to listen (2). During vaccine conversations, it is important to bear in mind that parents usually weigh the individual good (i.e., the expected benefits to their child) above the common good (3).…”

“…It is hoped that mobile apps may also help reduce the under-reporting of rare adverse events and/or infectious/immunological conditions to regulatory authorities (27–31). More recently, we are also collaborating with patient representative organizations to develop patient reported outcome measures giving a voice directly to children and their families (2). One example is the ‘ViVI Health Survey’, a digital tool helping children and adolescents on the move to report health needs securely and confidentially (32,33).…”

Parent Refusal of Topical Fluoride for Their Children

“…Listening is key and will help to build trust with a fluoride-hesitant parent. 59 Let the parent speak and avoid interrupting. Provide parents a tailored explanation of why topical fluoride is important . It is helpful to provide a tailored explanation of why fluoride is important based on the unique set risk factors associated with each child.…”

“…Listening is key and will help to build trust with a fluoride-hesitant parent. 59 Let the parent speak and avoid interrupting.…”