Stakeholder attitudes to a potential national registry for interstitial lung disease

Abstract

Aim
This survey aimed to characterise patient and healthcare professional (HCP) attitudes to a potential national registry of interstitial lung disease (ILD).

Methods
The survey was co-developed with the Irish Lung Fibrosis Association (ILFA) Patient/Public Involvement Research Advisory Group and distributed electronically to ILFA members, specialist respiratory healthcare professionals (HCPs) and on ILFA’s social media channels. Patients provided feedback on the acceptability of analysis of their medical data. HCPs provided feedback on the utility of a national registry. Responses were scored on a 4-point scale (1 = very low; 4 = very high acceptability/utility).

Results
Responses were collected from 6-26 November 2023. A high proportion of patients reported being "very comfortable" with collection of medical data [e.g. for time to diagnosis and care type: 89 patients (67%)] and with further analysis for research [106 (78%)]. HCPs reported high utility for data on patients’ medical condition [32 HCPs (94%)] and disease impacts [31 (81%)]. Both groups stated concerns about data confidentiality, access and security. HCPs stated concerns about GDPR compliance and logistical aspects with long-term registry maintenance.

Discussion
The concept of a national ILD registry and further analysis of data is acceptable to patients and perceived as useful by HCPs.