Data Use Application 002
Lead applicant organisation name
Name of the legal entity that signs the contract to access the data.
University Hospitals Birmingham (UHB).
Applicant: Omnia Attia, Junior Fellow Medical Retina.
Project title
The title of the project/research study request that the applicant is investigating through the use of health data.
Evaluating Medical Retina Service New Patient Pathways pre- and post-COVID-19 pandemic at University Hospitals Birmingham.
Lay summary
A concise and clear description of the project. This should outline the problem, objective and the expected outcomes in language that is understandable to the general public.
Diseases such as Age-related Macular Degeneration (AMD) and Diabetic Eye Disease that affect the retina and cause a person to lose their sight can be minimised if managed in a timely manner. AMD is caused by a number of changes which lead to an abnormal new growth of vessels within the retina. Diabetes causes changes in blood vessels throughout the whole body and can also lead to the growth of a different form of abnormal blood vessels in the retina.
Ophthalmology is the busiest outpatient specialty in the United Kingdom and delivering timely appointments is a challenge. The Royal College of Ophthalmologists highlighted ways to deal with this capacity issue that include referral refinement (in the community) and use of information technology and data systems to help manage delays and protect patients from harm caused by delays. They set key performance indicator for the percentage of patients seen within 25% of the target timescale for follow-up. INSIGHT's Data Use Case Exemplar, which examined the impact of the COVID-19 shut-down of non-essential services, found that patients with AMD in Birmingham had worse presenting vision for treatment compared to patients in London. The factors that could influence this new finding of potential inequality in care are not known and accordingly the aim of this study is to identify what factors may exist in the new patient pathway that could cause delay in people being seen by the Medical Retina Service at University Hospitals Birmingham. Key data points to be analysed include the period trends in timeframes for referral, time to treatment, who refers the patient, whether the appointment was cancelled (and if so by whom).
Public benefit statement
A description in plain English of the anticipated outcomes, or impact of project on the general public.
The impact of this evaluation will be local initially, with the UHB Medical Retinal team being able to provide this evidence to staff that assist with appointment booking, and feedback to patients. It will be benchmarked against national guidance for referral and waiting times. The local medical retina population has the potential to benefit from this study as the information from the analysis of this clinical pathway data will help the UHB team to make relevant changes to ensure equity of access to patients. If causes for delay in the patient pathway to care are identified, this evidence will be used to amend the pathway.
Latest approval date
The last date the data access request for this project was approved by a data custodian.
01 August 2022.
Dataset(s) name
The name of the dataset(s) being accessed.
Bespoke University Hospitals Birmingham Medical Retina data.
Access type
Determines whether the data will be accessed with an Trusted Research Environment (TRE) or via data release.
Data released to University Hospitals Birmingham clinical staff. All researchers have received training in the care, use and protection of personal data, enabling them to comply with their responsibilities under the Data Protection Act.
Data sensitivity level
The level of identifiability of the data being accessed, as defined by Understanding Patient Data.
Anonymised.