Patient information technology access in secondary care
Research type
Research Study
Full title
To determine the requirements and access needs of patients to their secondary care electronic patient record.
IRAS ID
183341
Contact name
Daniel Peckham
Contact email
Sponsor organisation
LeedsTeaching Hospitals NHS Trust
Duration of Study in the UK
0 years, 6 months, days
Research summary
Handwritten and typed paper records of patients under the care of the Cystic Fibrosis (CF) unit in Leeds were replaced in 2007 by electronic patient records (EPR). Patients view and obtain graphical feedback at each clinic visit including trends in their lung function, weight and infection markers. The registering of 500 international accessible codes, have allowed us to incorporate all aspects of care such as routine bone scans, antibiotic therapies, drug allergies, alerts for repeat screening and the introduction of specific nutritional and physiotherapy treatments are also included, as are all blood tests and correspondence with GPs.
We now wish to test whether patient access to their own data can be incorporated within this system. This aligns with national guidance which wants individuals to have access to all of their health records including hospitals, community, mental health and social care services by 2018. Patients already have access to their primary care record within GP practices and have reported benefits including a feeling of increased control over their own health, greater understanding, improved adherence to care plans and medication. Progress in the secondary hospital care environment has been slower
Within the cystic fibrosis unit at St James’s Hospital, Leeds, we are ahead in having implemented electronic records seven years ago. In working more closely with patients, we now wish to test what aspects of the electronic system patients themselves would like to access. To do this we need to ask for their views and feedback before we can design access to their own patient record that is tailored to their needs. This survey aims to determine their own requirements and preferences regarding access to their secondary care electronic clinical record.
REC name
London - Hampstead Research Ethics Committee
REC reference
15/LO/1428
Date of REC Opinion
13 Aug 2015
REC opinion
Favourable Opinion