ICPCN Research Committee

In December 2009 the ICPCN formed a Scientific Research Committee in order to provide a forum of peer review for authors of articles and proposed research in the field of PPC, identify, recommend and prioritise areas of required research in PPC, develop a network to support researchers in the field of PPC, develop a new or existing web-based database of articles and research being conducted or proposed and assist in developing a structure for multi-centre clinical trials and study protocols.

TERMS OF REFERENCE

Background

The ICPCN has a vision to achieve the best quality of life and care for children/young people and their families and carers with life limiting illnesses worldwide through networking, advocacy, information sharing, education and research. The formation of a research committee was first suggested by Dr Rut Kiman and discussed further at the ICPCN meeting at the European Association of Palliative Care Congress and agreed to at the subsequent ICPCN Executive Board meeting on the 5th June, 2009.
 
Objectives
The goals of this committee are to:
  1. Provide a forum of peer review for authors of articles and proposed research in the field of PPC
  2. Identify, recommend and prioritise areas of required research in PPC
  3. Develop a network to support researchers in the field of PPC
  4. Develop a new or existing web-based database of articles and research being conducted or proposed
  5. Assist in developing a structure for multi-centre clinical trials and study protocols

Membership
  1. 7 to 12 people with active or past experience in PPC research to provide global and multi-disciplinary representation  a. Core requirement – one representative from Africa, North America, South    America, Asia, European Union countries, non European union countries, Oceania  b. Up to 5 invited positions – people identified for holding specific expertise not already provided by the group such as the chair of PPC, London  
  2. Core group to be sought by Steering Group regional representatives sending out expressions of interest on available email lists.
  3. In the event of multiple expressions of interest request to be sent out for CV including publication history
  4. Representative for each region then chosen by selection committee (we will need to appoint 3 people for selection committee) to obtain a suitable multidisciplinary and research experience mix
  5. The chair of the committee to be chosen at first meeting by the chosen representatives
  6. Positions to be held for a 2-year term with ability to seek reselection for another 2-year term
  7. 3 to 4 positions should change after each 2-year term to allow for new involvement but maintain institutional memory

Accountability and Reporting
  1. The committee is accountable to the ICPCN executive board with an annual report to tabled by the chair
  2. Members of the group will consult with, and report back to members in their region
  3. The committee will establish relevant links to individuals and groups with potential interest

Communication and Meetings
  1. The majority of contact within the group will be via e-mail
  2. Minimum teleconference or videoconference contact will be every 3-months
  3. These meetings will be supported by ICPCN
  4. Face-to-face meetings are possible but will require the committee to arrange and fund themselves
  5. Minutes of meetings to be recorded and sent to ICPCN information officer for distribution to committee for timely review then sent to wider distribution list
  6. Timely review means reporting back in 5 working days
  7. A quorum for a formal meeting will require 50% of members + 1

 
The selected members of this research committee are as follows:

CHAIR:  Professor Dr Susan Fowler-Kerry B.A., B.S.N, M.N., PhD
Professor
College of Nursing, University of Saskatoon
Director of the RBC Nurses for Kids Program
Saskatchewan, Canada

VICE CHAIR: Dr Julia Downing, B.N., Dip Cancer Nursing, M.A., PhD
Honorary Professor Makerere University
International Palliative Care Consultant
Fellow of the Higher Education Academy
Kent, United Kingdom / Kampala, Uganda

VICE CHAIR: Dr Caprice Knapp, PhD, M.A., B.ACum Laude
Economist and Assistant Research Professor
University of Florida
Florida, USA

Professor Myra Bluebond-Langner
Chair of Paediatric Palliative Care
UCL Institute of Child Health and Great Ormond Street Children's Hospital
London, United Kingdom

Dr Jan Aldridge BA, MSc, PhD, CPsychol
Consultant Clinical Psychologist in Paediatric Palliative Care and Chair of the Research Committee - Martin House Children's Hospice
Honorary Senior Lecturer in Clnical Psychology - University of Leeds
Honorary Consultant Contract - St James University Hospital, Leeds
Yorkshire, United Kingdom

Dr Susan Cadell B.A., MSW, PhD
Associate Professor - Wilfrid Laurier University: Faculty of Social Work
Interprofessional Advisor and Affiliate Professor - University of British Columbia: Faculty of Medicine, Division of Palliative Care
Director - Manulife Centre for Healthy Living
Ontario, Canada

Colette Cunningham M.A.; B.A. H.Dip. Ed, R.N. R.M; MPH
International Health and HIV Consultant
Solas Consultancy
Cork, Ireland

Dr Richard Hain MB BS, MSc, MRCP(UK), FRCPCH, Dip Pall Med
LATCH Senior Lecturer and Honorary Consultant in Paediatric Palliative Medicine
Dept. of Child Helath, Cardiff School of Medicine,
University Hospital of Wales
Cardiff, Wales

Dr Lulu Mathews M.B.B.S., D.C.H., MD (Pediatrics)
Retired Head, Dept of Pediatrics, Medical College, Calicut. 
Medical Officer, Pain and Palliative Unit  
Prof and Head, Dept of Pediatrics,
Medical College, Pariyaram, Kannoor, Karala
Calicut, India
 
Natallia N. Savva, MD, PhD, Docent
Medical Director
Belarusian Children's Hospice
Berezovaya Roscha 100A
Borovlyany
Minsk region
Belarus