The Scottish Government is working with a wide range of partners to establish a collaborative framework that will facilitate data linkages for research and statistical purposes to be conducted safely, securely, legally, ethically and efficiently.
The main purpose of this consultation exercise was to seek views on the aims of the Data Linkage Framework and a draft set of guiding principles.
This written consultation is just one part of a broader and on-going dialogue with a wide range of organisations and individuals. The findings outlined in the following sections are specific to this particular consultation exercise and do not necessarily reflect the weight or range of views within the population or sub populations as a whole. The respondents have not been representatively or purposively sampled and the majority of those who responded have a specialism or professional interest in the subjects covered by the consultation.
This report should be considered alongside the deliberative research conducted into the public acceptability of data linkage.
Once a set of principles has been agreed, the details of the other parts of the framework (a National Data Linkage Centre and an Analytical Privacy Advisory Service) will be developed. Comments to help develop plans for both of these were also welcomed at this stage, but there will be further opportunity to comment in 2013. More information will be made available through the Data Linkage Framework pages on the Scottish Government website
The consultation was published on the Scottish Government website on the 26th March 2012 with a deadline for responses of the 15th June 2012.
A number of organisations/individuals were invited to respond (Annex A).
Where the Scottish Government received permission from the respondent, responses have been published on the Scottish Government website.
The consultation responses have been analysed internally by the Scottish Government and this report represents a review of the responses rather than the Scottish Government's reaction to the responses.
In total there were 61 responses to the consultation, with 45 responses from organisations and 16 from individuals. The following table shows the breakdown of responses to the introductory question on the nature of respondents.
|Are you responding primarily as a data custodian, data user or data subject? (We recognise all people are data subjects and many organisations act as data guardians and data users, but please tick only one box)|
|Response selected||Number of respondents|
|Data User (e.g. researcher)||30|
|Data Subject (e.g. member of the public or group representing citizens)||5|
|All boxes selected||2|
|Data Custodian and Data User selected||2|
|Data User and Data Subject selected||1|
|No answer given||10|
The table shows that almost half of respondents were responding primarily as data users. Five of the respondents chose to select multiple categories and ten respondents did not select any of the options. A list of those who responded is presented in Annex B.
Responses to yes/no questions
Care should be taken in interpreting the counts of 'yes' and 'no' responses to the consultation questions. Only responses where one of the boxes was actually ticked or an explicit yes/no was provided are included in the count.
In a number of cases respondents selected a yes/no option which was contradicted by the content of their written response. In these instances no attempt has been made to infer or alter the yes/no response and the responses have been recorded as entered by the respondent.
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.
|Are there any benefits of data linkage for statistical and research purposes that are not sufficiently described here?|
|Type of respondent||Yes, there are further benefits||No, the benefits are described fully||No answer|
|Multiple categories selected||3||1||3|
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.
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
- 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.
Email: Michael Davidson
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