A Scotland-wide Data Linkage Framework for Statistics and Research: Consultation Analysis

Consultation Question 1: Benefits of data linkage

The consultation paper set out a range of benefits that data linkage can bring and asked: Are there any benefits of data linkage for statistical and research purposes that are not sufficiently described here?

The table below shows that around half of those who provided a response to the yes/no question suggested that there were further benefits to those described in the consultation paper.

General comments

In general, respondents were very positive about the benefits of data linkage. A number of respondents used this question to emphasise their support for data linkage in general and their support for the benefits a strategic approach might bring.

One such respondent noted that:

"Once the linkage infrastructure is in place, it will enable the creation of complex linked data and allow new and innovative research that can be used to enhance the delivery of public services. The benefits of such a programme would significantly improve research capabilities in Scotland and provide a robust platform to inform policy." (Centre for Data Linkage (Curtin University))

It was noted by some, however, that the benefits were described too specifically to capture all the various advantages of data linkage. Even the phrase 'data linkage for research and statistical purposes' used in the consultation question was considered by some too narrow.

In the analysis of the comments, the type of respondent (data user, subject or custodian) was examined. The different types of respondents were found to hold similar views on the benefits of data linkage, the main points of which are outlined in the sections below.

Additional benefits

It was suggested by a number of respondents that informing strategic and spending decision-making was a valid use of data linkage. As such, they argued that enabling activities such as tracking and predicting need for services, planning health and care provision, and monitoring the performance of public services was a key benefit of data linkage.

Data Linkage was also argued by more than one respondent to have benefits for local level decision making as it enables cost-effective data retrieval, analysis and comparison for lower geographical levels, and provides the potential to improve small area data. Additionally, linked data was argued to allow researchers to assess the representativeness of surveys of the populations from which they are drawn as well as potentially allowing for identifying patients eligible to take part in approved studies or trials.

There was a view expressed that the data linkage framework would lead to improved research skills and increased analytical competence with data linkage presenting a cost effective research tool. It was similarly argued that data linkage has the potential to drive innovation and investment by all actors and to improve understanding of available data. One respondent suggested that there could be a benefit in terms of income for data gatherers through a charging mechanism such that carefully anonymised data can be shared with industry researchers. In a related point it was suggested that if secure access to linked datasets for commercial organisations was enabled this could enable further applications of the findings of linked datasets to be applied in an operational context without compromising privacy.

It was argued that the consultation document should have been more explicit regarding the benefits on outcomes or service usage relating to protected characteristics in the EqualityAct . This was seen as an important means of assessing the extent to which people with protected characteristics are disadvantaged or experience poorer outcomes than others.

Specific research topics

A number of respondents highlighted specific areas of research using data linkage which could be of significant benefit. These were:

• the effects of social inequality and the impact of any policy changes designed to reduce inequalities
• long term or rare outcomes or side effects
• the accumulation of small exposures that may accumulate over a long period of time
• public health surveillance
• public health research
• health economics research
• pharmacovigilance
• health service evaluation
• health service audit
• the management of long-term conditions
• prognosis and prediction of major illness
• evaluation of health-care interventions
• epidemiological work to protect the health of the population
• evaluation of the responsiveness of e-health solutions
• areas which would benefit from more sophisticated analyses such as prescriptions, co-morbidity and serious adverse events.

It was also highlighted that new possibilities are likely to arise as work progresses and that the benefits realised would depend on the system of data linkage pursued.

Presentation of benefits

Additionally, there were a number of comments relating to how the benefits were described and presented in the consultation paper.

One respondent suggested it would be useful to rank the stated benefits in terms of their value to Scotland with another suggesting that each benefit should include details of how that benefit could be obtained without compromising individuals' control of their personal data.

Within the consultation paper examples of effective data linkage were presented alongside the mooted benefits and it was noted by respondents that it would have been helpful if the examples had included statements on how the solutions had benefited the population. It was also felt that the underlying principles for protecting personal data were not addressed sufficiently in each of the examples outlined.

It was further noted that the examples provided did not extend to areas such as counter-fraud or policing and would benefit from examples from beyond the health sector. Additionally, examples could have been included from Scandinavian countries where aggregate reports from linked information are readily available.