Table 6 Attribute level coding

The researchers are:

Only university researchers

RUNI

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

RUNHS

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

RUNHSG

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

RUNHSGP

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

INHS

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

INHSE

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.

INHSEB

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

INHSEBX

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.

BENEFITD

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

BENEFITG

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

BENEFITX

Profit-Making:

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

PROFITN

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

PROFITPUB

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

PROFITINV

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

PROFITR

Oversight:

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

NONGOV

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

PUB

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).

GOV

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

ORG