Paid focus group opportunity on de-identified personal data.
They are seeking members of the public across Cheshire and Merseyside to participate in online focus groups.
Each attendee will be required to attend one workshop, which will last approximately 2-2.5 hours. This will take place via Microsoft Teams. Participants will also be expected to do some pre-reading, which will take no longer than 30 minutes.
Experience and preferencing: No experience is required, but participants must live in Cheshire or Merseyside and be age 18 or over. We are particularly interested in reaching members who come from seldom-heard communities such as, but not limited to:
● Young people
● People from ethnic minorities
● LGBTQ+ people
● Expectant parents or those that have given birth within the past 6 months
● People with chronic illness and/or disability
● People who are unemployed
● People from low-income families
● Digitally excluded people
● People from coastal communities with deprivation
● People from rural communities
● Those who have served in the armed forces
The workshop will involve:
● Some pre-reading to gain familiarity with the concepts and content. We will go over these in person and take questions to support everyone's understanding to promote inclusion.
● A short introduction and warm-up exercise exploring feelings towards and understanding of the term “data” and then specifically in a health context.
● An exercise on what is personal and non-personal data and the meaning of “de-identified”.
● Facilitated discussion around hopes, worries and expectations of researchers and the health system to deliver on improving services and outcomes for people through the use of data.
● A short feedback survey.
Details and Frequently Asked Questions:
Where: Online via Microsoft Teams.
When: Thurs 8th Feb (6pm-8.30pm) Weds 14th Feb (11am-1.30pm)
Ran by: This is a collaboration between the NHS, NIHR, Health Innovation North West Cost and Civic Data Cooperative (Liverpool).
Why: To improve our understanding of hopes, worries and expectations regarding the use of health data in research, without consent, using new technologies that protect confidentiality. This is to help shape the governance of the use of data in a manner that is acceptable to the public and that generates trust.
Consent to record: We will be recording audio and using MS Teams transcription software. This will be analysed in combination with other groups engagement to explore themes in the final report, including quotes. Names will be removed but geographies and community affiliation if relevant may be included. Transcription will be stored secure in an Active Research Data store. A formal consent form with more detail will be provided upon expression of interest.
Payment: A £50 cheque per person will be available as per the NIHR fee structure for public participation.
Any further questions or if you would like to be involved contact:
Sophie Powers at: sophie.powers2@nhs.net or Christine Elliott at: christine.elliott13@nhs.net
When expressing an interest in being involved, please confirm which town or city you live in.
