title: 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.
authors.affiliation: Confederation of Meningitis Organizations, Kerhars, Le Haut Corlay, France; The Vienna Vaccine Safety Initiative, Berlin, Germany.
authors.forename: D
authors.initials: D
authors.lastname: Holt
authors.affiliation: The Vienna Vaccine Safety Initiative, Berlin, Germany; Department of Technology and Society Studies, Maastricht University, Maastricht, The Netherlands. Electronic address: f.bouder@maastrichtuniversity.nl.
authors.forename: F
authors.initials: F
authors.lastname: Bouder
authors.affiliation: The Vienna Vaccine Safety Initiative, Berlin, Germany; National Primary Healthcare Development Agency (NPHCDA), Abuja, Nigeria.
authors.forename: C
authors.initials: C
authors.lastname: Elemuwa
authors.affiliation: The Vienna Vaccine Safety Initiative, Berlin, Germany; Department of Paediatrics and Adolescent Medicine, University of Innsbruck, Austria.
authors.forename: G
authors.initials: G
authors.lastname: Gaedicke
authors.affiliation: The Vienna Vaccine Safety Initiative, Berlin, Germany; Centre for Research & Training in Skin Diseases & Leprosy, Tehran University of Medical Sciences, Tehran, Iran.
authors.forename: A
authors.initials: A
authors.lastname: Khamesipour
authors.affiliation: The Vienna Vaccine Safety Initiative, Berlin, Germany; Clinical Data Interchange Standards Consortium, Austin, TX, USA.
authors.forename: B
authors.initials: B
authors.lastname: Kisler
authors.affiliation: The Vienna Vaccine Safety Initiative, Berlin, Germany; Global Healthcare Consulting, New Delhi, India.
authors.forename: S
authors.initials: S
authors.lastname: Kochhar
authors.affiliation: The Vienna Vaccine Safety Initiative, Berlin, Germany; Department of General Practice and Family Medicine, Centre for Public Health, Medical University of Vienna, Austria.
authors.forename: R
authors.initials: R
authors.lastname: Kutalek
authors.affiliation: The Vienna Vaccine Safety Initiative, Berlin, Germany; Department of General Practice and Family Medicine, Centre for Public Health, Medical University of Vienna, Austria.
authors.forename: W
authors.initials: W
authors.lastname: Maurer
authors.affiliation: The Vienna Vaccine Safety Initiative, Berlin, Germany; Department of Paediatrics, Charité University Medical Centre, Berlin, Germany.
authors.forename: P
authors.initials: P
authors.lastname: Obermeier
authors.affiliation: The Vienna Vaccine Safety Initiative, Berlin, Germany; Department of Paediatrics, Charité University Medical Centre, Berlin, Germany.
authors.forename: L
authors.initials: L
authors.lastname: Seeber
authors.affiliation: The Vienna Vaccine Safety Initiative, Berlin, Germany; International Association of Innovation Professionals, Sugar Land, TX, USA.
authors.forename: B
authors.initials: B
authors.lastname: Trusko
authors.affiliation: SJG Consultancy, Lyon, France.
authors.forename: S
authors.initials: S
authors.lastname: Gould
authors.affiliation: The Vienna Vaccine Safety Initiative, Berlin, Germany; Department of Paediatrics, Charité University Medical Centre, Berlin, Germany. Electronic address: Barbara.Rath@gmail.com.
authors.forename: B
authors.initials: B
authors.lastname: Rath
mesh_terms: D003140:Communicable Disease Control; D004198:Disease Susceptibility; D034462:Dissent and Disputes; D014943:Global Health; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007258:Informed Consent; D055118:Medication Adherence; D010353:Patient Education as Topic; D011635:Public Health Administration; D014611:Vaccination / Q000009:adverse effects*; D014612:Vaccines / Q000009:adverse effects* / Q000276:immunology*
chemical_list: D014612:Vaccines
keywords: Cultural competency; Outcomes research; Patient advocacy; Patient empowerment; Patient voice; Precision medicine; Risk–benefit; Student education; User-centred research; Vaccines