| dc.description.abstract | Many scientists and researchers use information from hundreds or thousands of people to understand more about health and wellbeing, and to improve treatments and support for those with health problems. This information, or data, is collected in many ways and is kept secure by organisations or individuals known as ‘data controllers’. Their job is to manage the processes that allow bona fide researchers access to these data in a way that respects the privacy and confidentiality of the people the data refers to. Since the new data protection regulations (GDPR) introduced in the UK in 2018, we have heard that researchers and scientists are finding it more difficult to access the health data they need to do important scientific research. In order to collect more information about whether people are having problems with accessing data, and to understand more about what problems people were having, we conducted a short online consultation or survey asking about data access. We advertised the consultation by saying that MQ Mental Health Research (a charity that aims to improve mental health via research) and NHS Digital were interested in hearing about how the data access process could be improved, so it is possible that participants tended to be those who had faced difficulties. Sixty-three people took part in the survey, which was available for just over one month in late 2019. Eleven of them had not yet tried to get access to data, but said they were expecting problems if they were to try. Sixteen people were currently trying to access data, and 36 had successfully accessed data. The 52 people who had tried to, or had accessed, data reported a wide range of problems with their applications. Often each person experienced multiple problems. The application process has lasted between 2 and 70 months (median 12 months), bearing in mind that some of these were not yet completed. There were two common issues. Firstly, the process of application was lengthy and complicated, and not clearly explained. Secondly, researchers reported getting different advice from different people within the same organisation on the same procedures. In addition, some people reported difficulty finding a person who was senior enough in their own institution to sign off the forms. Our recommendations for data controllers, research organisations, and individual researchers following this consultation are shown in Box 1. Our consultation suggests that data access processes need to be clearer and more streamlined and applied in the same way across different data controllers. This would help to ensure that people seeking to access data get consistent advice and consistent responses. We recommend that timelines for the application process, as well as the time between application approval and data provision, are shortened. We need a better balance between data security and privacy on the one hand, and the availability of data to provide evidence for policy and practice in line with the open science movement on the other. This is particularly true where research stands to directly benefit individuals or societies. Those we consulted had a lot of suggestions for specific amendments 4 to parts of the existing process, which were underpinned by frustration and confusion with the process as a whole. Our findings highlight the need for rapid improvement and we recommend actions for all stakeholders within the next 12 months. Given that many other countries routinely publish studies using recent epidemiological data, failure to improve data access processes will clearly result in the UK lagging behind in the international scientific field. | en_GB |
