Agenda
Time | Agenda Item | Owner |
9:30am | Introductions | Chair |
9:35am | Terms of Reference and Meeting Frequency | Lead Senior Communications and Engagement Manager |
9:45am | Public Engagement Detailed Findings | Stakeholder and Public Engagement Lead |
10:25am | Any other Business | Chair |
Invitees
- Chair: Understanding Patient Data
- Deputy Chair: Association of Medical Research Charities / Cancer Research UK
- Stakeholder and Public Engagement Lead: DHSC
- Representative: National Data Guardian
- Lay member: Independent member
- Lay member: Independent member
- Lay member: Independent member
- Lay member: Independent member
- Lay member: Independent member
- Lay member: Independent member
- Lead Senior Communications and Engagement Manager: NHS England
- Project Manager: NHS England
Apologies
- Lay member: Independent member
Meeting notes
Agenda item 1 – Introductions
Review of previous minutes and declaration of interest
No revisions to minutes or declarations of interest
Agenda item 2 – Terms of reference and meeting frequency
Lead Senior Communications and Engagement Manager sought feedback from the panel members re: expanding the terms of reference to cover other key data programmes within NHS England. All panel members were in agreement therefore Lead Senior Communications and Engagement Manager will update and re-circulate the terms of reference.
Feedback:
- Members agreed with the suggestion to expand the terms of reference.
- Members commented that the current frequency meetings (fortnightly) should be maintained and avoid meetings being cancelled.
- Members asked for a list of programmes the new scope would cover.
Action:
Lead Senior Communications and Engagement Manager to update and re-circulate the terms of reference.
Agenda item 3 – Public engagement detailed findings
Stakeholder and Public Engagement Lead presented the Public Engagement Detailed Findings and explained that the agenda included methodology, representative sample, mix of backgrounds, use of data and survey.
Panel members asked questions following the presentation.
Questions
Q1 – When engaging with ethnic minorities for Tier 2 Inclusive Engagement, how were the audiences split?
Answer: We split the ethnic minority audience by migrant and non-migrant audience and also set and met the following quotas
- Ethnicity and religion
- 2x Black Christian
- 2x Black Muslim
- 2x Asian Muslim
- 2x Asian Hindu
- 1x Asian Sikh
- 1x atheist/agnostic (of any ethnic minority)
We aimed for a mix of ethnicity within ‘umbrella’ terms:
- within Asian, including a mix of those who are Indian, Bangladeshi, Pakistani and British
- within Black, including a mix of those who are African, Caribbean, and British
Q2 – Within the outputs, we said “Some Tier 2 participants with experience as research participants were sceptical about who would benefit from the ‘wider benefits’ proposed as research has informed policies which have discriminated against them in the past”. Were any examples given as part of this?
Answer: Transgender and sex worker audiences both mentioned this. Rather than specific policies, they felt generally that lots of research was done on them as audiences, but they rarely saw direct benefits of this. This fed into larger narratives that they felt sceptical of trusting research to be in their best interest and concerns that it could be used to feed into stereotypes of them as already discriminated against groups. Ethnic minority audiences also mentioned this i.e. research into cardiovascular issues in the Black community being pinned on diet rather than considering factors like the stress of being Black in Britain is one example of this.
Agenda item 4 – Any other business (AOB)
The recent issues around failing to pay panel members for their submitted timesheets have been escalated to HR Support Team. PMO Team committed to share information on payroll cut-off dates to the panel members immediately after the meeting.
Action:
- PMO Team to share the payroll cut-off deadlines
- PMO Team to circulate updated meeting agenda and any documents that will be presented to the panel members a week before the next meeting.
Next PPECAP meeting – Thursday 12 September 20024, 9.30am – 11.30am