Kathy Oliver

 

 

Current Positions

Chair and Founding Co-Director, International Brain Tumour Alliance (IBTA).

Qualifications

BA – Northwestern University, Evanston, Illinois, United States (1974)
EUPATI Fellow (2016)

Short Biography

Kathy Oliver is Chair and Co-Director of the International Brain Tumour Alliance, a global network founded in 2005 as a dynamic worldwide community for brain tumour patient organisations and others in the field of neuro-oncology.

On behalf of the IBTA, Kathy advocates for equitable access to brain tumour therapies; encourages the establishment of brain tumour patient organisations in countries where they don’t yet exist; is a frequent plenary and session speaker at international neuro-oncology and cancer conferences, and raises awareness of the challenges associated with this devastating disease.

Kathy’s son, Colin, was diagnosed with a brain tumour in 2004 at age 24 and passed away, at age 32, in August 2011.  She cites her son’s “incredible courage, determination and fortitude” as the driving force and inspiration behind her involvement in the international brain tumour and cancer community.

Research and Clinical Interests

Patient Advocacy
Quality of Life
Palliative Care
Emerging treatments

Committees

  • One of two patient advocates representing Rare Diseases Europe (EURORDIS) on the European Commission Expert Group on Cancer Control
  • Representative on both the EURORDIS patient advocacy group for EURACAN (the European Reference Network for rare adult solid tumors) and “Domain 10” of EURACAN (the European Reference Network for brain and CNS tumors.
  • Member of the Council of the British Neuro-Oncology Society (BNOS)
  • Member of the committee of Rare Cancers Europe (RCE)
  • Vice-Chair of the European CanCer Organisation Patient Advisory Committee (ECCO PAC)
  • Member of the European Society for Medical Oncology (ESMO) Patient Advocacy Working Group (PAWG)
  • Former member of the British Neuro-Oncology Society’s National Guidelines Group for Rare Brain and CNS Tumours
  • Founding Member of the All.Can initiative
  • Former member of the Rare Disease UK Working Group on Patient Care and Information
  • Former patient issues editor on the editorial board for the online magazine of the European Association of Neuro-Oncology (EANO)
  • Member of the EORTC’s SISAQOL Consortium (Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life endpoints Data for Cancer Clinical Trials)
  • Current contributor to the World Federation of Neuro-Oncology Societies (WFNOS) magazine
  • Co-founder, member and former board member of Cancer52, the UK umbrella group for over 90 rare cancer organizations
  • Member of the NCRI (UK) Brain Tumour Clinical Studies Group sub group on Palliative and Supportive Care
  • Consumer representative for the Cochrane Neuro-Oncology Group (UK)
  • Former Co-chair of the Project Advisory Board for the European Patients’ Academy on Therapeutic Innovation (EUPATI).

Selected Publications

(1) European Association for Neuro-Oncology (EANO) guidelines for palliative care in adults with glioma, The Lancet Oncology, Volume 18, No 6, e330-e340, June 2017. http://www.thelancet.com/pdfs/journals/lanonc/PIIS1470-2045(17)30345-5.pdf

(2) European Reference Networks (ERNs): A New Initiative to Increase Collaborative, Cross- Border Approaches to Treating Brain Tumor Patients , World Federation of Neuro-Oncology Societies Magazine,  ISSN 2518-6507, Volume 2 (2017), Issue 2. https://www.eano.eu/fileadmin/content/News_magazine/WFNOSM_2_2017_2.pdf

(3) Patient Value: Perspectives from the Patient Advocacy Community, Health Expectations, DOI: 10.1111/hex.12628, 2017.
http://onlinelibrary.wiley.com/doi/10.1111/hex.12628/full

(4) Analysing data from patient-reported outcome and quality of life endpoints for cancer clinical trials: a start in setting international standards, The Lancet Oncology, Volume 17, No. 11, e510–e514, November 2016. http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(16)30510-1/fulltext?utm_source=TLOweekly05.10.16&utm_medium=email&utm_campaign=TLOweekly

(5) A Catalyst for Change: The European Cancer Patient’s Bill of Rights, The Oncologist, 10.1634/theoncologist.2013-0452. http://theoncologist.alphamedpress.org/content/early/2014/01/31/theoncologist.2013-0452.full.pdf#page=1&view=FitH

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