Transparency in Health Care: Disclosing Adverse Events to the Public

Abstract

The topic of transparency has received increasing academic interest in recent years. Transparency can be interpreted as conducting affairs in the open, being subject to public scrutiny, or admitting to problems when they arise. This chapter analyses transparency in disclosing adverse events to the public in Norway. We use the widely publicized Daniel case to show the communication between the regulator and the public, discussing key elements of transparency in the healthcare setting, including the role of media. The Daniel case describes an accidental tonsillectomy characterized by cover-up, failure of the initial regulatory and hospital follow-up, coming to a head when media shone a spotlight on the case. The media coverage caused social amplification of the risk communication resulting in regulatory follow-up having to apply new forms of transparency strategies to rebuild trust in the public. By using the Daniel case as emblematic of Norwegian risk communication strategies in health care, improvements should be made along the lines of direct and adequate information exchange according to patient rights, and efforts to foster open and transparent regulatory and organizational cultures to ensure public trust.

Next of Kin Involvement in Regulatory Investigations of Adverse Events That Caused Patient Death: A Process Evaluation (Part I – The Next of Kin’s Perspective)

“…To date, we have lacked knowledge about next of kin’s involvement in such regulatory investigations. Informing investigations of adverse events causing death by involving next of kin is innovative regulation-wise, 20 , 23 and it is important to map and learn from next of kin’s experiences. Similar to other studies, 1 , 12 , 13 we found that next of kin had different conceptualizations of the event compared with what was presented in the written information.…”

Resilience: From Practice to Theory and Back Again

“…For example, this framing of situated, structural and systemic resilience can provide a framework for focusing attention on the critical questions of how, when and why fluctuations become disruptions, and how disruptions expand in scale to provoke larger moments of resilience that increasingly enroll greater numbers of stakeholders across a system and ultimately challenge, reorganize and reform core elements of that system. To take one practical example from healthcare: media reports and public pressure relating to the handling of a harmful adverse event can act as a significant disruption for a regulatory body, prompting a rapid response to review and reopen an investigation using existing organisational resources and models (situated resilience); which in turn can provoke the design and reorganization of new processes for involving next-of-kin and outside experts in inquiries (structural resilience); and ultimately can lead to system-wide recommendations for reforming the underling mechanisms of collaboration between regulatory bodies involved in assessing compliance with core regulatory requirements (systemic resilience) [3]. This example illustrates how an integrative framework for resilience should be flexible enough to accommodate granular details related to a single organization and event, whilst also providing a language to explain the 'scaling up' of resilience across entire systems and over long time periods.…”

etterlatte ved hendelsesbaserte tilsyn av dødsfall- en evaluering

“…Det har i flere år blitt rettet kritikk mot at pasienter, brukere og pårørende har hatt for liten involvering i tilsynsaktiviteter generelt og i oppfølging av alvorlige hendelser i helsetjenesten spesielt [1][2][3][4][5][6][7]. En overordnet målsetting fra tilsynsmyndighetene er derfor å styrke involvering av etterlatte i tilsynssaker samt å ta i bruk de etterlatte og pårørende sine erfaringer som en ressurs for å utvikle brukerperspektivet i norsk tilsynspraksis [5,8].…”

“…Dette kan dreie seg om intervjuer eller møter med involverte parter i motsetning til kunnskapsinnhenting som i hovedsak baserer seg på gjennomgang av journalnotater, dokumenter og skriftlige uttalelser.Slike møter med involverte parter kan bidra til mer effektive laeringsprosesser og bør i større grad utforskes med tanke på videre metodeutvikling i konteksten av tilsynsmyndighetens mandat og aktiviteter[18,19]. Sentralt for å få dette realisert er en sterk ledelsesforankring og videre utvikling av seleksjonskriterier knyttet til hvilke type saker som egner seg for en mer direkte dialog med involverte parter i de ulike tilsynssakene.Frem til nå har det vaert manglende kunnskap om hva etterlatte sin involvering i tilsyn kan bidra til, og tiltaket dette prosjektet representerer er i så måte innovativ[7,20]. Innovasjon i tilsynsmetoder for å innhente et godt kunnskapsgrunnlag for vurdering av tilsynssaker er i stadig utvikling, og i den senere tid har brukerinvolvering stått sentralt nasjonalt og internasjonalt[11,12,24].…”