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Ear, nose and throat/otolaryngology
Research
What are the requirements for developing a successful national registry of auditory implants? A qualitative study
  1. Rishi Mandavia1,
  2. Alec Knight2,
  3. Alexander W Carter3,
  4. Connor Toal4,
  5. Elias Mossialos3,
  6. Peter Littlejohns2,
  7. Anne GM Schilder1
  1. 1 evidENT, UCL Ear Institute, Royal National Throat, Nose and Ear Hospital, London, UK
  2. 2 Health Service and Population Research Department, King’s College London, London, UK
  3. 3 Centre for Health Policy, Imperial College London, London, UK
  4. 4 School of Medicine, University College London, London, UK
  1. Correspondence to Mr. Rishi Mandavia; rishimandavia{at}gmail.com

Abstract

Objectives Hearing 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.

Design Qualitative study.

Participants Data 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.

Results Twenty-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.

Conclusions This 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.

  • audiology
  • adult otolaryngology
  • neurotology
  • health policy

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2018-021720

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    Footnotes

    • Contributors RM, AK, AWC, CT, EM, PL and AS made substantial contributions to the conception and design of the work. RM and AK collected the data. RM, CT, PL and AS analysed the data. RM, AK, AWC, CT, EM, PL and AS were involved in drafting the article and revising it critically. RM, AK, AWC, CT, EM, PL and AS approved the final version to be published. RM, AK, AWC, CT, EM, PL and AS agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

    • Funding AK and PL were supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South London at King’s College Hospital NHS Foundation Trust. This work was supported by: a NICE Scholarship, UCL Public Policy Small Grants Scheme. All authors had complete access to the study data that support the publication.

    • Disclaimer The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Funders were not involved in study design, data collection, data analysis, manuscript preparation or publication.

    • Competing interests None declared.

    • Patient consent Obtained.

    • Ethics approval Ethical approval was granted by UCL Research Ethics Committee 9031/001.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement No additional data available.