Published on: 17th May 2017
Case Study 31
Project Lead: Kerina Jones, Swansea University
Authors: Kerina Jones, David Ford and Christine Dobbs, Swansea University
Graeme Laurie and Leslie Stevens, University of Edinburgh
Nathan Lea, University College London
When a person visits a health care provider such as a doctor, a nurse, or optician, the health care provider will make notes and store data about their patients. This is for tracking a patient’s health and wellbeing, and for gaining information that can be used to guide on treating other patients. Sometimes people take part in research projects that collect data to find out new knowledge that can be used to develop better medicines and treatments. This study explores what happens when data is not used in the most effective way, and the consequences this can have. This is regarded as the harm caused by the ‘non-use’ of data.
The researchers studied a wealth of case studies from around the world and these provided the team with many examples of the consequences of the non-use of data. The team looked at case studies with incidents of non-use of data connected with clinical care records, research data, and the governance frameworks of rules and regulations around the use of health data. Examples of the types of incidents found were differing data recording systems in health care organisations making it difficult for others to understand the data; researchers being unable or failing to make results of research available; and delays due to the way rules and regulations are implemented.
The research provided many examples of the non-use of data which have led to serious consequences including injuries, deaths and
heavy financial implications for health and Government services across the world. Even though in some cases it would be difficult to prove in law that a type of harm was because of the non-use of data, this is a very real and serious global problem.
In terms of the analogy of the blind man in the dark room looking for the black cat, the non-use of data is a large, agile, polymorphic, lethal, black cat that must be tamed so data can be used more efficiently for research to benefit the public and save resources.
This study has provided a great insight into the problems related to the non-use of data on health services, research, Government, and the people of society, and has provided valuable information on how we can further develop this research to address the problems highlighted. The findings of this study are a step towards improving how data are used in order to save lives and resources.
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Enquiries to Sarah Toomey, Communications Officer, Farr Institute CIPHER, email@example.com