What are the requirements for developing a successful national registry of auditory implants? A qualitative study

Abstract

ObjectivesHearing loss is an area of unmet need, and industry is targeting this field with a growing range of surgically implanted hearing devices. Currently, there is no comprehensive UK registry capturing data on these devices; in its absence, it is difficult to monitor clinical and cost-effectiveness and develop national policy. Recognising that developing such a registry faces considerable challenges, it is important to gather opinions from stakeholders and patients. This paper builds on our systematic review on surgical registry development and aims to identify the specific requirements for developing a successful national registry of auditory implants.DesignQualitative study.ParticipantsData were collected in two ways: (1) semistructured interviews with UK professional stakeholders; and (2) focus groups with patients with hearing loss. The interview and focus group schedules were informed by our systematic review on registry development. Data were analysed using directed content analysis. Judges mapped the themes obtained against a conceptual framework developed from our systematic review on registry development. The conceptual framework consisted of five categories for successful registry development: (1) planning, (2) registry governance, (3) registry dataset, (4) anticipating challenges, (5) implementing solutions.ResultsTwenty-seven themes emerged from 40 semistructured interviews with professional stakeholders and 18 themes emerged from three patient focus groups. The most important factor for registry success was high rates of data completion. Benefits of developing a successful registry of auditory implants include: strengthening the evidence base and regulation of auditory implants, driving quality and safety improvements, increased transparency, facilitating patient decision-making and informing policy and guidelines development.ConclusionsThis study identifies the requirements for developing a successful national registry of auditory implants, benefiting from the involvement of numerous professional stakeholder groups and patients with hearing loss. Our approach may be used internationally to inform successful registry development.

Public awareness of forensic odontology and willingness to enroll in a prospective dental registry: A survey conducted in Saudi Arabia

“…Although crime movies and documentaries are available on television, not every member of the public will be exposed to these. A previous study has also investigated the requirements for the development of a successful national registry of auditory implants, collecting the opinions of both the patients and stakeholders (Mandavia et al, 2018). Of the 18 themes emerging from the patient group, the most important factor identified for a registry was the advertising of the benefits of the registry (Mandavia et al, 2018).…”

“…A previous study has also investigated the requirements for the development of a successful national registry of auditory implants, collecting the opinions of both the patients and stakeholders (Mandavia et al, 2018). Of the 18 themes emerging from the patient group, the most important factor identified for a registry was the advertising of the benefits of the registry (Mandavia et al, 2018). This is the reason why the authors believe that a vital component in the successful establishment of a national dental registry is its marketing, involving the dissemination of knowledge regarding forensic dentistry, via social media, television, and healthcare facilities.…”

Evaluation of the SAMEO-ATO surgical classification in a Dutch cohort

“…Classification of both surgical outcomes by means of the SAMEO-ATO and the classification of the pathology should always be performed together. It is important to register data uniformly in order to improve the evidence base, compare outcomes, enhance quality and form guidelines [ 9 , 10 ]. The SAMEO-ATO is a detailed surgical classification system and this detail enhances the amount of information collected, is specific in describing the subgroups and therefore could contribute to achieve the goals of registering uniformly.…”

'It’s not something you can take in your hands'. Swiss experts’ perspectives on health data ownership: an interview-based study

“…18 The attention to the topic of health data ownership on a theoretical level is also mirrored by the increased scrutiny that this issue has received in empirical literature. In this respect, research has considered mostly the questions of who should be the owner of health data [19][20][21][22][23][24][25] or underlined that there is lack of (legal) clarity about rules and rights concerning data control. [26][27][28][29][30][31] However, existing empirical research discuss this issue from a broad perspective in the context of data management and data reuse, without focusing extensively on different aspects of data ownership and its meaning.…”