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. From 26 March to 15 June 2012 a written consultation exercise was conducted to seek views on the aims of the framework and a draft set of guiding principles. This report provides an analysis of responses received.
Overall Key Messages
- The majority of responses welcomed the framework and were very positive about the benefits that data linkage can bring to Scotland.
- Responses served to emphasise the challenges identified in the consultation paper with a significant minority feeling that privacy and legal barriers had not been properly considered. Levels of concern were highest in relation to consent and the potential for commercial gain.
- The draft guiding principles were favourably received. Some respondents suggested that the principles should allow more leeway for judgement and others suggested they needed to be presented as a firm set of rules.
- There was general support for the plans for a Privacy Advisory Service and a Data Linkage Centre. However, there was also uncertainty and concern over how the two would fit in with existing organisations and existing data linking arrangements.
- There were a number of suggestions on how both the overall approach could be improved and specific elements could be delivered most usefully.
Key messages on the benefits of data linkage
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.
A number of respondents highlighted specific areas of research which could be investigated to significant benefit using data linkage.
Key messages on the challenges or barriers to data linkage
The bulk of responses to this consultation question were detailed expansions or variations on the challenges identified in the consultation paper, i.e.: uncertainty about the legalities and public acceptability of data sharing and linkage; incomplete data, or data that cannot be linked; limited capacity for secure exchange and access to data and; limited capacity of public sector organisations to analyse and make use of linked data.
Some respondents felt that privacy and legal barriers had not been properly considered, and the lack of the necessary knowledge amongst staff who would be involved in data linkage was also repeatedly cited as a challenge.
Key messages on the guiding principles
Responses regarding the principles were broadly positive, nonetheless there were a number of detailed suggestions for improvements addressing a variety of the principles. A number of the respondents sought further information or clarity on the terminology used.
There were a large number of comments relating to the principles which covered consent with some differing views on the desirability of opt-in consent. There was also uncertainty and curiosity regarding the principle which referred to commercial gain.
Key messages on the objectives for a Privacy Advisory Service
The majority of respondents were broadly supportive of the Privacy Advisory Service (PAS) with over half of those who responded indicating that the objectives were the right ones. In particular the PAS was felt to be useful for situations where data custodians are unsure whether they can legally and appropriately make data available for linkages.
The general positive tone of responses was tempered with concern as to how the PAS would fit in with existing bodies and the proposed Data Linkage Centre, and it was suggested that there was scope for existing organisations to fulfil the functions of the PAS.
Other responses emphasised the primacy of data controllers in decision making and concerns were expressed over any plans for the PAS to make enforceable decisions.
It was emphasised in responses to the questions for both the PAS and the NDLC that any new arrangements should not merely present additional bureaucratic hurdles to data linkage and should not interfere with data linkage already being successfully conducted.
Key messages on the functions to be led by the National Data Linkage Centre
The weight of responses regarding the National Data Linkage Centre (NDLC) were supportive and many respondents suggested additional functions that an NDLC should take on, such as quality assuring the data and linkage processes and coordinating the maintenance of research-enabled national data ready for linkage.
To various degrees, respondents urged that the NDLC build on existing structures and best practice and several respondents commented on the importance of coordination, harmonisation and integration between all the bodies involved. It was highlighted by more than one respondent that there may be disadvantages to centralising data linkage functions through the establishment of the NDLC.
Email: Michael Davidson