The Importance of the Patient Voice in Vaccination and Vaccine Safety - Are We Listening?

"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."

This paper reflects on the paradigm shift towards increasing attention to the patient voice in vaccination and vaccine safety and looks at how listening to the patient voice is key in any risk communication strategy.

As is explained in the introduction, this shift reflects the reality that (most) patients are not experts in the field of vaccines or risk assessments. As a result, communication needs to be clear and concise, without complicated jargon and allowing questions and seeking feedback regularly. In short, health care providers (HCPs) need to hear their patients, using active listening techniques, to understand how they are assessing and perceiving risk, and to use this information to encourage better informed decisions. "Meeting the objective of proactive communication requires going beyond information disclosure and forging a true alliance between vaccine recipients and/or their parents, patient organizations and HCPs."

Who are the patients, and what influences the patient voice? The article's authors define the term "patients" in this case as vaccine recipients and/or parents of vaccine recipients when the recipients are children. The patient voice, which may be positive or negative, fragmented or complex, is influenced by various individual filters and perceptions. Key perception drivers include, for example, the high/low prevalence of a disease, perceived risk frequencies, availability and comprehensiveness of information, perceived dilemmas and ambiguities regarding how to interpret information, the consequences for decisions to vaccinate or not, freeloading versus altruistic feelings, levels of confidence and trust in institutions, complacency, and, sometimes, personal convenience.

The authors' review of relevant literature highlights the central role of the HCP in fostering 2-way communication partnerships and in building trust. For example, it has been shown that "developing personalized communication strategies, which may involve narratives and metaphors, requires that physicians have sufficient time to listen, paired with the knowledge and communication skills to adequately address the concerns raised during the conversation". However, despite all that has been written on the topic, the fact that talking and listening to patients remains the subject of research highlights that the communication gap between the doctor and patient still exists. Thus, the following sections of the article explore barriers to effective communication, as well as potential solutions.

Though the internet is described here as a possible boon to patient education and empowerment, there are concerns with this channel for vaccination information and communication, such as the fact that commentary sections in social media have given the stage to extreme positions and rumours. On a positive note, online platforms may also provide an opportunity for healthcare professionals to gain a better understanding of concerns and fears that may remain unspoken during personal interactions with patients.

Other barriers relate to time constraints and organisational challenges: "With constraints on resources, how can an increased time be allocated to individual patients? Future studies should explore the cost-effectiveness and health benefits of in-depth consultations regarding the benefits and risks of vaccine prevention."

Furthermore, HCPs may need education so that they themselves see the need to be vaccinated themselves; HCPs acting as role models in this way goes hand in hand with patient compliance.

The final section of the article focuses on strategic approaches to effective vaccine communication and possible solutions for the challenges outlined.

• Criteria for effective listening and communication skills include:
  1. The communicator needs to be well-informed, and risk communication should be based on accurate scientific data.
  2. HCPs need be effective communicators; modern communication tools offer new avenues to help effective communicators to achieve their goals. For example, an interactive chat or text message campaign could be effective in providing vaccine education and prompting patients to converse directly with their doctors and peers about vaccines and vaccination.
  3. Patient representative networks offer an opportunity to provide feedback regarding symptoms, treatments, and the effectiveness of public communication strategies. This may take the form of patient-research partnerships and other initiatives where advocacy groups and others non-governmental organisations (NGOs) sit together with industry and research agencies.
• It is therefore not possible to develop one single strategy or guideline that would be applicable to all geographies: Context matters. Two brief case studies illustrate the lessons that can be learned from in-depth analysis of challenging situations: oral polio vaccine (OPV) refusals in Nigeria, and the measles vaccination campaign following Ebola outbreaks in Liberia.
• Strengthening the physician-patient relationship to bridge the communication gap requires that HCPs be trained to communicate in a language that is clear, comprehensive and devoid of any highly specialised medical terminology. The focus on active listening skills is particularly important when vaccines are discussed; teaching students and young doctors to listen may be encouraged through positive identification with role models (a text box illustrates this). Risk communication experts could be involved in vaccine consultation clinics as well in HCP training. This approach could help HCPs to receive and then tailor messages based on a clear assessment of common perceptions, biases, abilities, and interests. A 3-step process is outlined for collecting information that could be used to develop risk communication messages for testing and then development into risk communication material.

Prior to a bullet-point list of key points, the authors discuss a number of issues in the article's conclusion, noting, for example, that "Patient empowerment should not be considered a threat but rather as an opportunity to listen and understand each other's attitudes. An increased awareness of the patient viewpoint should inspire collaborative research and, above all, help to advocate for a positive attitude to vaccines and vaccination." Advocacy, in fact, is a theme stressed in these concluding thoughts, where the authors express the hope "that the political and public health climate will continue to move the important topic of vaccination up the agenda. Collaborative research networks will continue to pursue opportunities on a global scale, although it must be recognized that different strategies and tactics will be required. Large international organizations and public-private partnerships with their knowledge, experience and infrastructure are in a unique position to encourage mutual dialogue, but small local organizations focused on communities and their leaders will become increasingly important. These opportunities must not be wasted and in the near future we will see patient groups, healthcare professionals and researchers joining together in coalition with policy makers to seize these opportunities and bring about change."