Directrice générale / Executive Director
Coalition priorité cancer au Québec / Quebec Cancer Coalition
TITLE OF PRESENTATION: How Patient Advocacy Can Elevate Silenced Voices in Health Care and Public Policy
DESCRIPTION: How do patient voices reach health care and public policy decision makers ears, minds and hearts? How can we ensure that silenced voices of those affected by cancer not only get heard but get integrated into policies that directly affect them? Patient advocacy groups often provide the expertise, passion and influence to elevate these voices and ensure that structures, processes, and outcomes that matter most to people coping with cancer are considered by relevant governmental instances.
Eva Villalba is the Executive Director of the Quebec Cancer Coalition, a non-profit patient advocacy group dedicated to improving the Quebec health-care system for people affected by cancer. Since 2008, she has been involved in health-care charities, advocacy groups and non-profits. She graduated from McGill University with double majors in Psychology and Applied Linguistics, then completed an MBA from HEC Montréal in order to apply best business practices to the non-profit sector. She is currently completing an MSc. in Health Care Transformation at the UT Austin - Value Institute for Health & Care with the goal of sharing Value-Based Health Care (VBHC) expertise in Quebec and Canada. Eva is passionate about good governance, government relations, public policy, community impact, health-care transformation and social innovation.
Eva Villalba est la directrice générale de la Coalition priorité cancer au Québec, un groupe de défense des patients à but non lucratif voué à l'amélioration du système de santé québécois pour les personnes touchées par le cancer. Depuis 2008, elle est impliquée dans plusieurs organismes charitables en santé, groupes de défense de patients et d’autres OSBL. Elle est diplômée de l'Université McGill avec des spécialisations en psychologie et linguistique appliquée, puis a complété un MBA de HEC Montréal afin d'appliquer les meilleures pratiques d'affaires au secteur sans but lucratif. Elle complète actuellement une MSc. en Transformation de la santé à l'UT Austin - Value Institute for Health & Care dans le but de partager l'expertise des soins de santé axées sur la valeur (VBHC) au Québec et au Canada. Eva est passionnée par la bonne gouvernance, les relations gouvernementales, les politiques publiques, l'impact communautaire, la transformation des soins de santé et l'innovation sociale.
Desiree A.H. Walker
Health Educator and Coach, Patient Advocate
TITLE OF PRESENTATION: I Am More Than You See
DESCRIPTION: A cancer narrative that provides an up close look at life after hearing the words “you have cancer” and the arduous trek to and through survivorship. It highlights and answers some of the questions patients think about on their cancer journey and what healthcare providers should ponder to bring equity, diversity and inclusion top of mind and ensure they are serving every patient. A look at why effective doctor/patient communication is the cornerstone to building a healthy trusting relationship with appropriate supports. What steps will move advocating for all from theory to standard practice.
At the age of 38, Desirée A.H. Walker was diagnosed with breast cancer, which recurred at age 47. For many who have had to fight breast cancer, Desirée serves as an advocate for patients by openly speaking about her diagnoses to audiences nationally and internationally. The core of her message is to encourage patients to truly know their body and feel empowered to steward self, mind, body and soul. Through SHARE’s Side by Side Program, Desirée trains medical students and doctors on how to deliver disappointing news and vehemently supports the importance of patient/doctor communication. She volunteers with the Witness Project® of Harlem, SHARE Dedicated experienced support, and Young Survival Coalition as President, Board of Directors. She is a member of the National Coalition for Cancer Survivorship’s (NCCS) CPAT, the NCI Cancer Prevention and Control Central Institutional Review Board; Society of Integrative Oncology’s (SIO) Patient Advocate Committee and Health Equity and Inclusion Task Force; and the NCI’s SWOG Recruitment and Retention and Patient Advocate Committees. She’s a former member of the CDC’s Advisory Council on Breast Cancer in Young Women.
Desirée has addressed “Spirituality and Cancer” at CancerCare’s Living with Cancer Conference. Desirée has also served as a panelist at the SXSW’s International Women’s Day event and SIO’s Sleeping Well After Cancer: Translating Patient-Centered Research Into Practice. She has provided a patient advocate perspective at MSKCC’s National Minority Cancer Awareness event, The Cornell Center for Health Equity’s Tri-Institutional Symposium on Health Equity, and the 12th AACR Conference on the Science of Cancer Health Disparities. Desirée played a part in Cancer.Net’s “Navigating Challenges” video series and the Cancer Support Community’s ebook on breast reconstruction. Desiree is featured in Conquer Cancer Foundation’s Annual Report - Your Stories mini-podcast, Komen’s “Know Your Girls” campaign, Novartis’ Video “Emotional Impact” and the Ralph Lauren 20th Anniversary Pink Pony Campaign. Desirée facilitates support groups for women of African descent who are dealing with breast or ovarian cancer. Desirée has received numerous awards for her outstanding work as a volunteer, community leader, health educator and breast cancer survivor. Desirée’s diagnoses motivated her to become a patient advocate to share her talents and aid diverse communities. She uses her platform to be a voice for the voiceless and pay forward by educating and empowering people around the world. Most importantly, she makes time to “smell the roses”.
Chair of the Board of Childhood Cancer Canada
Patrick Sullivan is a passionate childhood cancer advocate, and Chair of the Board of Childhood Cancer Canada and one of the founders of the Team Finn Foundation.
Patrick became an advocate after his twin son Finn was diagnosed with Rhabdomyosarcoma in 2007 and heard the word “incurable” for the first time in May 2008. His desire to make a change in cancer research is in part an effort to pay an un-payable debt to his son Finn and to Change the Stories of other Finn’s.
Patrick participates in several national and international initiatives that include one of the founders of Ac2orn (Advocacy for Canadian Children Oncology Research Network), a director of the CCRA, member of the executive of the Terry Fox Research Profyle initiative, member of the AACR Pediatric Cancer Working Group and Chair of the St. Baldrick’s/Stand-Up to Cancer Immunogenomics Advocates Dream Team.
By profession, Patrick is a securities and corporate-commercial litigator practicing at Whitelaw Twining.
Patrick is the proud father of three remarkable children, Baird, Sarah and Finn and would do almost anything for the simple pleasure of holding Finn’s hand again.