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Table 1 Attributes and Levels

From: Public preferences regarding data linkage for research: a discrete choice experiment comparing Scotland and Sweden

Attribute

Levels (text variation for Sweden in brackets)

The researchers are:

Only university researchers.

Only university researchers or NHS staff (researchers employed by a county council).

Only university researchers, NHS staff or government researchers (researchers employed by a county council or researchers employed by one of the authorities).

University researchers, NHS staff, government researchers (researchers employed by a county council or researchers employed by one of the authorities) and commercial researchers such as market research organisations or pharmaceutical companies.a

The type of data being linked:

Information from your GP (primary care) records being linked with information from your other NHS (county council) health records e.g. hospital records.

Information from your NHS (county council) health records being linked with information from your social care or education records.

Information from your NHS (county council) health records being linked with information from your social care or education records, or from your employment and benefits (national health insurance) records.

Information from your NHS (county council) health records being linked with information from your social care, education, employment, and benefits (national health insurance) records, as well as information collected about you in the private sector e.g. through online shopping accounts. a

The purpose of the research:

Research using linked information should only be conducted if it will have direct benefits for the people whose information is being used.

Research using linked information should only be conducted if it will have general public benefits.

Research using linked information should be allowed for any reason.a

Profit-Making:

Nobody should be allowed to profit from research carried out using linked information.

Any profit made from research carried out using linked information should be shared with the public.

Any profit made from research carried out using linked information should be invested into public services.

Any profit made from research carried out using linked information should be kept by those carrying out the research. a

Oversight:

The process should be overseen by the Scottish (Swedish) Government.

The process should be overseen by a non-governmental independent body (an independent body that is not part of the Swedish Government).

The process should be overseen by the relevant public service(s); for example, research that uses information from people’s health records should be overseen by the NHS (county council).

The process should be overseen by the organisations undertaking the research. a

  1. a base level in the analysis