Evaluating patient access to CF patients and healthcare professionals
Research type
Research Study
Full title
Evaluating the feasibility, benefits and acceptability to patients and health care professionals of providing secure access of linked secondary care and patient’s Personal Health Records in Cystic Fibrosis (CF)
IRAS ID
224154
Contact name
Akhil Sawant
Contact email
Sponsor organisation
Leeds Teaching Hospitals
Duration of Study in the UK
0 years, 7 months, 1 days
Research summary
The aim of this study is to evaluate the feasibility, benefits and acceptability to patients and health care professionals of providing secure access of linked secondary care and patient’s Personal Health Records in cystic fibrosis (CF). This study will take place at Leeds Teaching Hospitals NHS trust and 100 patients attending the Regional Adult CF Unit will be recruited.
The study will take part over 6 months. All patients who have agreed to take part in the study and give written consent will have 2 visits in total.
Patients will then be allocated to one of two groups – either to have access to their electronic patient record routine care or to receive routine care as they have had before (no access to electronic health record).
According to which group patients are allocated they will complete 11 questionnaires at the beginning of the study and 12 at the end (access to record) or 11 questionnaires at the beginning of the study and 10 at the end (no access to record). The questionnaires will take 1 hour to complete at the beginning and end of the study.
Clinicians working on the Leeds adult CF unit will take part in focus group questionnaires at the beginning and the end of the study to evaluate the impact of patients access to their electronic records.
Clinicians working on the Leeds Paediatric CF Unit will also take part in separate baseline focus groups to evaluate the impact of future patient access with paediatric and adolescents.
Following this, both groups of patients will be provided with personalised access to their EHR.REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
17/LO/1933
Date of REC Opinion
26 Nov 2017
REC opinion
Further Information Favourable Opinion