the healing foundation is a national fundraising charity championing the cause of people living with...
TRANSCRIPT
The Healing Foundation is a national fundraising charity
championing the cause of people living with disfigurement
and visible loss of function, by funding research into
pioneering surgical and psychological healing techniques.
Through research, we also raise awareness about the cause
and provide information about the sources of support.
What is the Healing Foundation?
PatronHRH The Countess of Wessex
ChairmanThe Rt Hon the Lord Patten of Barnes
Research ChairmanProfessor Sir John Temple
Appeal ChairmanSir Stuart Rose
Executive Appeal Team Members:Sir Martin Sorrell, Jeremy Darroch, William Rucker…
Research Council Members:Jonathan Sandy, The Surgeon General, David Whitby…
What is the Healing Foundation?
The Healing Foundation Centre at the University of ManchesterTissue regeneration, £5 million over 10 years
The Healing Foundation UK Centre for Burns Research£5 million over 10 years
Major Psychological Project£500,000 over 3 years, ending Autumn 2009.
Patient Information Projectc £200,000 over 3 years.
Support projectsFellowships, projects, student electives.
What is the Healing Foundation?
What is the Healing Foundation doing for cleft?
What is the Healing Foundation doing for cleft?
1. The Healing Foundation UK Centre for Cleft Research supported by VTCT
2. The Healing Foundation/MCRN UK Clinical Studies Group for Cleft & Craniofacial Anomalies
What is the Healing Foundation doing for cleft?
“Invitation to Submit a Proposal to HostThe Healing Foundation UK Centre for Cleft
Research supported by VTCT”
What is the Healing Foundation doing for cleft?
The Healing Foundation UK Centre for Cleft Research
supported by VTCT, will improve the treatment, long-term
care and support for CLP patients and their families by
pursuing each of the following key objectives;
What is the Healing Foundation doing for cleft?
• To better understand the genetic factors contributing to cleft occurrence,
• to better understand the environmental factors contributing to cleft occurrence,
• from this developing knowledge, to better inform treatment options and improve treatment outcomes,
• through nationally coordinated research, to test, prove and disseminate evidence on the best clinical treatment options for cleft, and
• to involve patients and their families, as much as possible, in the research and in improving the information, support and long term care options.
What is the Healing Foundation doing for cleft?
1. The establishment of a Gene Bank aimed at identifying some of the important, as yet unknown, genetic and environmental influences active in the occurrence of CLP.
2. A major Clinical Research Programme, to address the important surgical, therapeutic, psycho-social and information questions that can so influence successful treatment, after-care and long term coping.
What is the Healing Foundation doing for cleft?
1. The Gene Bank• Blood/DNA from children and families• Role of inherited genotype• Impact of the ‘environment’
2. Clinical Research Programme• Speech therapy intervention• Feeding and ear ventilation in CLP• Genetics and the mechanism of clefting• Surgical comparisons• Audiology• Nursing care• Antibiotic use in children, and• Patient/parent-decision making
July to September 2009Site Visits and Interviews.
October 2009Healing Foundation Research Council meeting and Board of Trustees.
Outcome announced, applicants informed.
October 2009 to January 2010Written agreement drawn up
Spring 2010Recruitment of key academics and establishment of the Healing Foundation UK Centre for Cleft Research supported by VTCT.
What is the Healing Foundation doing for cleft?
The Healing Foundation/MCRN UK Clinical Studies Group for Cleft & Craniofacial Anomalies
What is the Healing Foundation doing for cleft?
What is the Healing Foundation doing for cleft?
The Healing Foundation/MCRN UK Clinical Studies Group for Cleft & Craniofacial Anomalies
1. Develop/oversee portfolio of ‘studies’2. Propose new studies and trials3. Consider studies proposed by others and advise NIHR4. Provide advice to investigators5. Ensure consumer involvement in all activity
How can patients/families be involved?
“…driven by our vision to deliver real and noticeable patient
benefit.”
“Commitment to patient centred research”
“to involve patients and their families, as much as possible, in
the research and in improving the information, support and
long term care options.”
How can patients/families be involved?
Involvement so far
• Healing Foundation patient/consumer representation
• Patient involvement in identifying priorities
• Application pack
• Involvement in developing applications
How can patients/families be involved?
Future role
• Patient representation on Selection/Review Panel
• User involvement on national, strategy setting Clinical
Studies Group
• Strategic and representative role in successful bid
• Communication of progress and achievement
Conclusion
• Largest investment in Cleft Research in the
UK/Europe/World
• Patient involvement has been central in defining priorities
and selecting institution(s) so far
• How best can CLAPA engage with the research community
to ensure continued focus on patient-driven, patient-
centred, patient-priority research?