Table 2

Mandatory and optional consent items for CARE75+ REMOTE

Mandatory consent itemsOptional consent items
(1) Have read the participant information sheet and been given a full verbal explanation of the study.(1) A member of the study team to review records that may be held by social services about use of their services.
(2) Have been given enough time to think about the information.(2) Researchers asking if I am interested in taking part in future studies that have been approved by the CARE75+ oversight group and providing them with my contact details (name, address, phone number) and very limited information about me that will help them determine my suitability for future studies.
(3) Understand the reason for the research and what will happen if I take part.(3) The researchers accessing and using data about me, as described above, in the event of my death.
(4) Understand that I am free to withdraw from the research at any time.(4) The researchers informing my GP of my participation in the study.
(5) Understand that a member of the study team will review my medical records (primary care and hospital records), including my electronic health record.(5) The researchers informing my GP if I am assessed as having an unmet health need.
(6) Understand that sections of my medical notes and data, including electronic health records, may be looked at by responsible individuals from the NHS Trust or regulatory authorities where it is relevant to my taking part in this research. I give permission for these individuals to access my records.(6) If my capacity to make informed decisions should deteriorate during the course of this study I wish to remain a participant.
(7) Understand that all information about me will be kept strictly confidential and that information will be anonymous except in cases of safeguarding.
(8) Agree to my anonymous data being analysed by members of the research team and also by researcher teams outside of the team (this could include researchers from other universities) that have been approved by the CARE75+ data review committee.
(9) Agree to the researchers conducting over the phone assessments with me at baseline (my first assessment) and then for me to undertake an assessment at 6, 12, 18, 24, 30 and 36 months (options of telephone, postal questionnaire, or web submission).
(10) Understand that even if I withdraw from the above study, the data already collected about me will be used to analyse the results of the study, unless I specifically withdraw consent for this. I understand that my identity will remain anonymous.
(11) Agree to my details, including my name and address, and a copy of this consent form to be stored at Bradford Institute for Health Research at Bradford Royal Infirmary for the sole purpose of managing this study.
(12) Agree for my personal details (eg, NHS number, date of birth, postcode, sex and initials) to be used to link study data with current and future data sources. These include (but are not limited to) primary and secondary care electronic health record systems (eg, SystmOne, EMISWeb, Vision, Cerner EPR), health (eg, Hospital Episode Statistics, Biologics Register, Cancer Registry), social services (eg, Community Care Statistics), environmental (eg, Air Pollution), economic (eg, Work and Pensions Longitudinal Study, Indices of Multiple Deprivation) and research databases (eg, UK Biobank, ResearchOne, CPRD, Q Research, ELSA) (data linkage).
  • GP - General Practice

  • NHS - National Health Service

  • EPR - Electronic Patient Record

  • ELSA - English Longitudinal Study of Ageing

  • CPRD - Clinical Practice Research Datalink

  • CARE75+, Community Ageing Research 75+.