Appendix 2: gaining consent

Where an individual has registered a preference to opt out from their CPI being shared it is still possible for a person with a “legitimate relationship” with the subject to contact  this individual either through correspondence or in person (e.g. during a clinic) as a potential participant, to obtain their consent to participate in a specific research study, or to ask them if they would like to be put forward for such a study.

A person with a “legitimate relationship” with the subject would be for example a member of their direct clinical or care team like a GP, practice nurse, social worker or hospital consultant. In some cases a researcher might have a “legitimate relationship” with the potential participant, for example, they might be part of the subjects clinical or care team, but for many researchers this will not be the case and they will need to approach the clinical or care team to do this on their behalf.

Potential participants can also identify themselves, for example, via a web portal giving their consent to be contacted by the research team. Potential participants are usually asked to complete a consent form setting out clearly what they are consenting to, e.g. permission to access their medical information.

Computer software is available which can search clinical databases, selecting patient who are eligible for a specific research study, and will only reveal the identities of these potential participants to someone with a “legitimate relationship” to the patient (clinician/social worker), who can then contact the patient to obtain consent for them to be approached by a research team.