Data quality in health and social care for those with rare genetic conditions. The Patient questionnaire.

A message from the researcher.

I am Dr Howard Leicester, a deaf-blind researcher commissioned by the NHS to explore issues of data quality with important, but perhaps neglected, users of health and social care across the UK.

Data quality is about the information collected and shared across service providers and with patients to deliver and plan effective services. The NHS wish to understand any problems you may have, and to let others know about service providers who are doing well.

A questionnaire is available to capture your views as a patient or patient representative. It contains full instructions as well as examples to help you understand the meaning of data quality in real life.

The questionnaire will run until Monday 22 March. Interim results will be presented to the NHS on 25 March.

GIG has generously offered its support to this project. Access to the questionnaire is via this message. No email addresses or personal data will be collected. However, I may contact quoted service providers showing excellent practice. GIG will also have full access to the data available to me and will receive copies of final reports.

Do please complete the questionnaire via: http://www.surveymonkey.com/s/YK7Z3FD

Very many thanks,

Howard
Independent researcher, and Honorary Fellow at City and Edinburgh universities.