National Institute of Health Research

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The PPI reference group advises NETSCC on the development of effective ways of working at every stage of the research management process, to support the implementation of the PPI framework. In its first year it will meet four times.

The reference group is co-chaired by Jon Cole, NETSCC’s Assistant Director of Finance and Strategy and Jim Elliot. Jim Elliott is a health research management consultant whose experience of developing and implementing public and patient involvement strategies includes the Health Research Authority, Pancreatic Cancer UK, and London South Comprehensive Research Network. Jim is an associate member of INVOLVE and also a long term carer.

The six public members of the PPI reference group are all experienced and skilled in varying aspects of PPI in health research.

View the current membership of the PPI reference group

Eleni Chambers 

  • Member of Shaping Our Lives National User Group
  • Member of Governing Body of Healthwatch Sheffield and other local PPI groups in health and social care
  • Experienced survivor researcher, working freelance and for a variety of organisations

Jon Cole (Co-Chair)

  • Assistant Director for Communications, PPI and External Engagement
  • Experienced NIHR manager having also worked in the areas of journal production, research prioritisation, clinical trials units and systematic reviews
  • Former Web Marketing Manager for the University of Southampton

Tasneem Dhanji

  • Public reviewer of applications to NIHR programmes with personal experience of managing a long term health condition
  • Associate Solicitor for the British Association for Counselling & Psychotherapy, who regulate their members
  • Legal Member of the Legal Committee of the Ismaili Council for the UK assisting members of the Ismaili Muslim community within the UK who require legal help

Jim Elliott (Co-CHair)

  • Long term carer and patient reseach advocate
  • Public Involvement Lead for Health Research Authority (part-time)
  • Former head of research for a national voluntary organisation 
  • Experienced in research and development management
  • Associate Member of INVOLVE

Debby Lennard 

  • Lay member of Research for Patients Benefit board
  • Involvement Coach and other roles for Cancer Research UK
  • PPI steering group member and/or  co-applicant on research projects
  • Member of lay advisory boards for CLAHRC and UCLH

Linda Parkinson Hardman

  • CEO of The Hysterectomy Association
  • Specialist committee member for NICE Menopause Quality Standard
  • Experienced women’s health researcher and author
  • Experienced public reviewer of research applications
  • Fellow of the Royal Society of Arts

Jane Putsey

  • Experienced public contributor on NICE and NIHR committees
  • Cared for parents at end of life and subsequently volunteered at local hospice
  • Public reviewer for NIHR applications
  • Grassroots volunteer supporting breastfeeding mums for many years, leading on to work to improve standards of care for infant feeding.
  • Member of Northwest People in Research Forum until recent move to Scotland

Amanda Roberts

  • Experienced public reviewer of research applications
  • Public member of trial management groups and research steering committees
  • Part of a team running a web-based health support group

Sophie Staniszewska

  • INVOLVE Associate and former chair of INVOLVE's Evidence, Knowledge and Learning Group
  • Leader of the POPPY project which examined parents' experiences of having a pre-term baby
  • Leads PPI & Patient Experiences Programme at the RCN Research Institute


The other organisational members of the reference group are:

Gary Hickey (INVOLVE)

  • Senior Public Involvement Manager at INVOLVE
  • Board member at Healthwatch Croydon
  • Experienced researcher, project manager, trainer and lecturer in patient and public involvement
  • Helped establish the Centre for Public Engagement at Kingston University

Doreen Tembo

  • NETSCC Senior Research Manager, PPI
  • Former research methods and PPI consultant with the NIHR Research Design Services (RDS), former Chair of the National RDS Public Involvement Community
  • Researcher in public health, health services and patient experience of health and healthcare

View the PPI Reference Group meeting notes

December 2015 Notes (pdf, 90.11 KB)Link open in a new window
September 2015 Notes (pdf, 101.72 KB)Link open in a new window
June 2015  Notes  (pdf, 121.08 KB)Link open in a new window
March 2015Notes (pdf, 333.71 KB)Link open in a new window
December 2014
Notes (pdf, 298.09 KB)Link open in a new window
June 2014
Notes (pdf, 293.26 KB)Link open in a new window
March 2014Notes (pdf, 102.3 KB)Link open in a new window
December 2013
Notes (pdf, 91.37 KB)Link open in a new window
September 2013
Notes (pdf, 100.96 KB)Link open in a new window
June 2013
Notes (pdf, 88.41 KB)Link open in a new window
March 2013
Notes (pdf, 178.98 KB)Link open in a new window
December 2012
Notes (pdf, 190.57 KB)Link open in a new window
September 2012
Notes (pdf, 185.67 KB)Link open in a new window
June 2012
Notes (pdf, 220.43 KB)Link open in a new window
March 2012
Notes (pdf, 105.34 KB)Link open in a new window



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