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Abstract Bronchiectasis is an increasingly common chronic respiratory disease which requires a high level of patient engagement in self-management. Whilst the need for self-management has been recognised, the knowledge and skills needed to do so— and the extent to which patients possess these—has not been well-specified. On one hand, understanding the gaps in people’s knowledge and skills can enable better targeting of self-management supports. On the other, clarity about what they do know can increase patients’ confidence to self-manage. This study aims to develop an assessment of patients’ ability to self-manage effectively, through a consensus-building process with patients, clinicians and policymakers. The study employs a modified, online three-round Delphi to solicit the opinions of patients, clinicians, and policymakers (N = 30) with experience of bronchiectasis. The first round seeks consensus on the content domains for an assessment of bronchiectasis self-management ability. Subsequent rounds propose and refine multiple-choice assessment items to address the agreed domains. A group of ten clinicians, ten patients and ten policymakers provide both qualitative and quantitative feedback. Consensus is determined using content validity ratios. Qualitative feedback is analysed using the summative content analysis method. Overarching domains are General Health Knowledge, Bronchiectasis-Specific Knowledge, Symptom Management, Communication, and Addressing Deterioration, each with two sub-domains. A final assessment tool of 20 items contains two items addressing each sub-domain. This study establishes that there is broad consensus about the knowledge and skills required to self-manage bronchiectasis effectively, across stakeholder groups. The output of the study is an assessment tool that can be used by patients and their healthcare providers to guide the provision of self-management education, opportunities, and support.

BackgroundSharing electronic health records with patients has been shown to improve patient safety and quality of care. Patient portals represent a convenient tool to enhance patient access to their own health care data. However, the success of portals will only be possible through sustained adoption by its end users: the patients. A better understanding of the characteristics of users and nonusers is critical for understanding which groups remain excluded from using such tools. ObjectiveThis study aims to identify the determinants of the use of the Care Information Exchange, a shared patient portal program in the United Kingdom. MethodsA cross-sectional study was conducted using a web-based questionnaire. Information collected included age, gender, ethnicity, educational level, health status, postcode, and digital literacy. Registered individuals were defined as having had an account created in the portal, independent of their actual use of the platform; users were defined as having ever used the portal. Multivariate logistic regression was used to model the probability of being a user. Statistical analysis was performed in R and Tableau was used to create maps of the proportion of Care Information Exchange users by postcode area. ResultsA total of 1083 participants replied to the survey (186% of the estimated minimum target sample). The proportion of users was 61.58% (667/1083). Among these, most (385/667, 57.7%) used the portal at least once a month. To characterize the system’s users and nonusers, we performed a subanalysis of the sample, including only participants who had provided at least information regarding gender and age. The subanalysis included 650 individuals (389/650, 59.8% women; 551/650, 84.8% >40 years). Most participants were White (498/650, 76.6%) and resided in London (420/650, 64.6%). Individuals with a higher educational degree (undergraduate and professional, or postgraduate and higher) had higher odds of being a portal user (adjusted odds ratio [OR] 1.58, 95% CI 1.04-2.39 and OR 2.38, 95% CI 1.42-4.02, respectively) compared with those with a secondary degree or below. Higher digital literacy scores (≥30) were associated with higher odds of being a user (adjusted OR 2.96, 95% CI 2.02-4.35). Those with a good overall health status had lower odds of being a user (adjusted OR 0.58, 95% CI 0.37-0.91). ConclusionsThis work adds to the growing body of evidence highlighting the importance of educational aspects (educational level and digital literacy) in the adoption of patient portals. Further research should not only describe but also systematically address these inequalities through patient-centered interventions aimed at reducing the digital divide. Health care providers and policy makers must partner in investing and delivering strategic programs that improve access to technology and digital literacy in an effort to improve digital inclusion and reduce inequities in the delivery of care.