Providing Mobile Patient Access to Their Electronic Secondary Care Patient Record in Adults With Cystic Fibrosis - Results of a Prospective, Parallel, Randomized Open-Pilot Quantitative Study

Sep 30, 2026

Uploaded by Jacob

Background: Leeds regional adult and pediatric cystic fibrosis services introduced a modified primary care EHR in 2007, improving efficiency while enabling full patient access to records. Objective: Evaluate feasibility, benefits, usability, and patient acceptability of providing secure access to linked secondary care EHR in cystic fibrosis. Methods: Prospective parallel randomized open-pilot study with intervention (EHR access) and control (no access), assessing psychological impact, satisfaction, QoL, relationships, adherence, and computer literacy. Results: 91 participants completed 6 months; no adverse effects on anxiety, depression, or QoL; high satisfaction and usefulness, and 98% supported continued access. Conclusions: Secure EHR access shows no negative effect and yields strong uptake.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages18

Reading Time45 min

AccessFree to download

Abstract

Background

Objective

Methods

Results

Conclusions

Introduction

Digital transformation and health information risks

Integrated health care vision

JMIR FORMATIVE RESEARCH Chadwick et al Original Paper Providing Mobile Patient Access to Their Electronic Secondary Care Patient Record in Adults With Cystic Fibrosis: Results of a Prospective, Parallel, Randomized Open-Pilot Quantitative Study | Helen K Chadwick 1,2, BSc, MSc, PhD; Akhil Sawant2, MBBS, MSc, MRCP; Helen White3, MSc, PGCHE, SRD, PhD; Lindsey Gillgrass2, RGN; Giulia Spoletini2, MD, PhD; Ian J Clifton2, MD; Christine Etherington2, MBChB; Daniel G Peckham1,2, MBBS, DM | | --- | | 1Respiratory Medicine, Leeds Institute of Medical Research at St James's, University of Leeds, Leeds, West Yorkshire, United Kingdom 2Adult Cystic Fibrosis Unit, St James's University Hospital, Leeds Teaching Hospitals NHS Trust, Leeds, West Yorkshire, United Kingdom 3School of Clinical & Applied Science, Leeds Beckett University, Leeds, West Yorkshire, United Kingdom
Corresponding Author:
Helen K Chadwick, BSc, MSc, PhD Respiratory Medicine
Leeds Institute of Medical Research at St James's University of Leeds
Clinical Sciences Building Leeds, West Yorkshire, LS2 9JT United Kingdom
Phone: 44 113206 9106
[Email:](Email: h.k.chadwick@leeds.ac.uk)[ ](Email: h.k.chadwick@leeds.ac.uk)[h.k.chadwick@leeds.ac.uk](Email: h.k.chadwick@leeds.ac.uk)
Abstract | Background: The Leeds regional adult and pediatric cystic fibrosis (CF) services introduced a modified primary care electronic health care record (EHR) in 2007. This resulted in a dramatic improvement in efficiency while providing the benefits of primary care developments, including full Patient Access to their records. Objective: This study aims to evaluate the feasibility, benefits, usability, and acceptability to patients ofproviding secure access to linked secondary care in CF. Methods: A prospective, parallel, randomized, open, pilot study with an intervention (EHR access; I) and a control group (no EHR access; C) . People with CF were recruited on a consecutive basis, from outpatient clinics or as inpatients on the regional Leeds adult CF unit. At baseline and 6 months, paper-based self-report questionnaires were completed by participants to assess having access to EHR on psychological impact, patient satisfaction, quality of life (QoL), patient and physician relationships, and patterns and rates of adherence to treatment. Perceptions and engagement with Patient Access and computer literacy were also assessed. Once completed, participants were randomized into either the intervention or control group (1:1), with those in the intervention group given instructions about how to gain access and the functions of Patient Access by the research team. Results: A total of 91 people with CF completed the 6-month study (intervention n=45; median age 27.5, IQR 12.0 years; 22 male participants; control group n=46; median age 27.0, IQR 15.0 years; 29 male participants) . Median number of logins was 9 (range 1-205) . There was no effect of Patient Access on levels of anxiety (Generalized Anxiety Disorder-7; I=3.0, C=5.0), all symptom QoL scales and seven QoL domains (Cystic Fibrosis Questionnaire-Revised; respiratory I=63.89, C=55.56; weight I=100.00, C=66.67; digestion I=88.89, C=88.89; physical I=60.42, C=50.00; vitality I=54.17, C=41.67; emotional I=86.67, C=66.67; role I=75.0, C=75.0; body image I=77.78, C=66.67; eating disturbances I=88.89, C=100.0; treatment burden I=55.56, C=55.56), levels of depression (Patient Health Questionnaire-9; I=3.0, C=7.0), confidence in managing health care (Patient Activation Measure-13; I=66.67, C=60.63), level of trust in health care professionals (patient and provider perceived efficacy inpatient-physician interaction; I=49.0, C=47.0), and computer literacy. Patient Access scored 86% for satisfaction, 82% for ease of use, and 80% for usefulness (Perceived Health Web Site Usability Questionnaire) . Of those who had EHR access, 41 of 42 (98%) participants agreed that access to EHR should continue. Conclusions: This pilot study sugges

FAQs

What was the primary objective of the study?

To evaluate feasibility, benefits, usability, and patient acceptability of secure access to linked secondary care electronic health records for adults with cystic fibrosis.

How were participants assigned to the study groups?

Participants were randomized 1:1 after baseline assessment into an intervention group with EHR access and a control group with no EHR access.

Did providing patient access to EHR increase anxiety or reduce quality of life?

No. The study reported no effect on anxiety, depression, or symptom and QoL domains measured over the 6-month period.

Sep 30, 2026

Uploaded by Jacob