ÉVÉNEMENTS
Speakers 2024
Full speaker profiles are listed on this web page in alphabetical order.
You can also view these profiles organised by program session in the speaker booklet. This is available as a downloadable PDF, or in Flipbook format here:
![ZAlidina Photo of Zahra Alidina PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/ZAlidina-e1720474562570-circle-a192269e354d3c4fd305c6c097edbe3d-uwnz0j36sgdl.jpeg)
Zahra Alidina
Zahra Alidina est étudiante de premier cycle en biologie à l’Université McMaster. Elle a travaillé comme étudiante chercheuse à SickKids. Pendant plusieurs années, elle a été patiente partenaire au sein de différentes organisations, notamment C4T (Canadian Collaborative for Childhood Cannabinoid Therapeutics), les IRSC et SKIP (Solutions pour la douleur chez les enfants). Elle est passionnée par la façon de lever différents obstacles auxquels se heurtent les patients et les familles et de faire participer ces personnes à la recherche.
![RAmany Photo of Raissa Amany PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/RAmany-circle-e88c90b9a4bcc82fb1bc4895984d7f6c-yb82s7q4tuap.png)
Raissa Amany
Raissa Amany is a national award-winning social activist, speaker, and consultant, known for her work on youth engagement in health spaces. She is the Executive Director of the Young Canadians Roundtable on Health where she leads over 70+ youths from across Canada in national child health advocacy. Beyond pediatrics, Raissa is a prominent youth expert in child and youth mental health and addictions where she serves on numerous national and provincial advisory boards and councils. Outside of her activism, she is pursuing an undergraduate Health Sciences degree at the University of Ottawa.
![CArdern Photo of Clare Ardern PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/CArdern-circle-79017f399741ecad73072938bbea02bd-mjvxcdku9lqa.png)
Clare Ardern
Dr Clare Ardern is an Australian-trained physiotherapist and Assistant Professor in the Department of Physical Therapy at The University of British Columbia in Vancouver, Canada (traditional, ancestral and unceded land of the Coast Salish people). She teaches evidence-based physiotherapy practice with a health equity focus, and her research team works to bring patients, clinicians and health policy-makers together to co-design, implement and evaluate digital health solutions for musculoskeletal problems. In the last decade, Dr Ardern has led musculoskeletal rehabilitation and digital health research in Australia, Qatar, Sweden and Canada. She has served the global musculoskeletal rehabilitation community as Editor-in-Chief of the Journal of Orthopaedic & Sports Physical Therapy (JOSPT) since 2018, and hosts the weekly JOSPT Insights podcast, which is downloaded more than 30 000 times each month.
![KAsante Photo of Kwanele Asante PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/KAsante-circle-19e1d80ffba104f84f5357acdb75bf10-sc9y0kibxml8.jpg)
Kwanele Asante
Kwanele Asante is the Former Chairperson of the Ministerial Advisory Committee on Cancer Prevention and Control, Republic South Africa. She serves on the World Health Organisation’s Civil Society Working Group on Non-Communicable Diseases. Kwanele has received several awards for her African cancer equity activism, including the Harvard Global Health Catalyst – 2016 African Ambassador Award. She serves as a community representative on the South African Medical Council’s Bioethics Advisory Panel and she is a former member of the External Advisory Board of the STARS Program at Harvard Medical School, USA.
Asante has a B. A. Liberal Arts (Psychology-Sociology major) degree from Wesleyan University in Middletown, Connecticut, USA. And LLB and MSc Medicine: Bioethics and Health Law degrees from the University of the Witwatersrand, South Africa.
Ressources recommandées:
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BMJ article on WHO Social Participation Resolution https://doi.org/10.1136/bmj.q1460 (Published 10 July 2024)
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The right to participate: An under-utilised component of the right to the highest attainable standard health - https://go.shr.lc/3SeIol2
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World leaders unite to embed social participation in health systems - https://www.bmj.com/content/bmj/386/bmj.q1460.full.pdf
![CAugustine Photo of Cherelle Augustine PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/CAugustine-scaled-circle-3230774bbfeb0c51e8ebbba5d67e0314-1q3ic2e7ah8u.jpg)
Cherelle Augustine
Cherelle is a young lady living with Sickle Cell Disease. Since childhood and throughout her lifetime, she has campaigned for Sickle Cell Disease, educating members of the public, clinicians, paramedics, schools and politicians alike. Currently working for NIHR ARC NWL in the UK, she is part of the Ethnicity & Health Unit and continues to co-produce with researchers to improve the quality of care and standard of life for those living with Sickle Cell and other patients using social, community and healthcare systems.
![FAwan Photo of Fez Awan PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/FAwan-circle-47014669ea20ef6e71e59455ff01d41d-8qjgo3v7lwam.jpg)
Fez Awan
Je m’appelle Fez Awan et je suis dans la trentaine. Je suis né et j’ai grandi au Lancashire, au Royaume-Uni, de parents pakistanais. Je suis né avec une insuffisance rénale chronique; à ce jour, j’ai reçu trois transplantations rénales, dont un don vivant de mon père, et j’ai eu recours à la dialyse sous toutes ses formes. J’ai aujourd’hui d’autres maladies chroniques, mais l’insuffisance rénale chronique est la première maladie que j’ai eue, dès la naissance.
Ressources recommandées:
- Ressources sur la participation du public et des patients - Health Data Research UK (HDRUK)
- National Institute for Health and Care Research (NIHR)
- Kidney Research UK (participation des patients atteints d’affections rénales)
![OAjayi Photo of Oluwafemi Ajayi 2024 Steering Committee member for PxP.](https://pxphub.org/wp-content/uploads/bb-plugin/cache/OAjayi-circle-581b6c7ca0a73e0eb33efbe3ac31f77d-4z70nkmyq6h1.jpg)
Oluwafemi Ajayi
Atteinte d’anémie falciforme dès la naissance, Oluwafemi Ajayi vit avec cette maladie depuis plus de 40 ans. Elle représente les patientes et patients atteints de cette maladie tout en leur donnant les moyens d’y faire face par l’intermédiaire de son organisme sans but lucratif, la « Gail Sickle Initiative ». Titulaire d’un doctorat de l’Université de l’Afrique du Sud, elle a écrit et co-rédigé quelques articles et publications et est membre active de divers organismes mondiaux donnant la priorité à la représentation et à l’inclusion des patientes et patients. Elle rêve d’un monde où la douleur aura été éradiquée
Toutes les ressources:
Comptes de médias sociaux:
Twitter/X: @SickleGail @ClickOluwa1129
Instagram: @gailsicklein @ClickOluwafemi
Facebook: 'Gail Sickle Initiative
Oluwafemi Ajayi
Linkedin: Oluwafemi Ajayi
![EBalasa Photo of Ella Balasa PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/EBalasa-circle-6fb330f21a763042f83cbd40de207d96-bikjl63xnvuf.jpeg)
Ella Balasa
Ella Balasa défend les droits des patients, agit comme consultante et vit avec la fibrose kystique, une maladie pulmonaire génétique rare. Elle a reçu ce diagnostic à l’âge de 18 mois et a été hospitalisée à d’innombrables reprises depuis son enfance. En raison de son expérience dans le système de santé, elle s’est engagée à autonomiser les patients et à promouvoir des stratégies de recherche et de soins par ses relations avec des chercheurs, des sociétés pharmaceutiques et des organisations de patients. Forte de ses connaissances en biologie, elle préconise l’élaboration de nouvelles thérapies pour le traitement des infections antibiorésistantes, très présentes dans sa vie. Elle s’est exprimée publiquement sur cette question et sur la valeur de la voix des patients en recherche lors de congrès en santé, auprès de la FDA, dans différents balados et devant le Congrès..
Ella croit en l’importance d’inviter les patients à participer activement aux soins de santé en les outillant et en les formant à collaborer avec d’autres acteurs pour améliorer les issues des maladies. Elle contribue à l’élaboration d’essais cliniques, à différents comités de recherche et au développement d’initiatives de mobilisation des patients.
Ella se passionne aussi pour la rédaction, la vulgarisation d’information clinique pour les communautés de patients et la transmission de ses réflexions sur son expérience des soins de santé et sur les difficultés et les réussites inhérentes aux maladies chroniques. Ses textes ont été publiés sur de nombreuses plateformes, notamment MedPage Today, HuffPost, BMJ, et dans le Pulmonary Therapy Journal. Elle a reçu le prix Health Union Social Health Award 2022 pour les collaborateurs en santé et siège à différents comités de patients d’organismes à but non lucratif, comme la Cystic Fibrosis Foundation et la Everylife Foundation. En travaillant auprès d’organisations de santé et en écrivant sur son parcours, elle cherche à modifier le paysage des soins de santé pour promouvoir l’autonomie sociale des patients et transmettre de précieuses connaissances aux organisations. Pour découvrir son travail et ses expériences, rendez-vous au www.ellabalasa.com.
Ressources recommandées:
![TBarber Photo of Thelma Barber PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/TBarber-circle-9c00e3be251518b813d6b206d2062f5c-016es83g4f9u.jpg)
Thelma Barber
Thelma is a two-time kidney transplant recipient living with chronic kidney disease, hypertension, and type 2 diabetes. Despite experiencing symptoms at just 12 years old, it took nearly a decade for Thelma to receive a diagnosis of IgA Nephropathy (Nephrotic Syndrome) in 1993 and chronic kidney disease in 1998. Today, she is a passionate advocate for all people with kidney disease, especially African Americans and those from financially disadvantaged backgrounds. She's fighting for equal access to quality healthcare and transplants for all, as well as much needed legislation for the kidney community with the National Kidney Foundation, Kidney Advocacy Committee-Voices for Kidney Health. Managing her symptoms for over 30 years, Thelma speaks to the importance of early detection, having a care partner, and working with your HCP to manage your Cardio-Renal-Metabolic conditions. Thelma has participated in several clinical journals and CKD/DKD learning modules to help further educate the community about this disease.
![TBharadia Photo of Trishna Bharadia PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/TBharadia-scaled-circle-5c9b593ef7ffb98c77b9109b5e3dd0f9-l86qvtrmd7fa.jpg)
Trishna Bharadia
Consultante en mobilisation des patients, Trishna Bharadia (SPARK Global) est une promotrice de la santé primée à de multiples reprises. Elle vit avec plusieurs maladies chroniques, notamment la sclérose en plaques, diagnostiquée en 2008. Établie au Royaume-Uni, elle travaille à l’échelle nationale et internationale avec de nombreux partenaires, notamment des membres de l’industrie, des cercles universitaires et d’organismes à but non lucratif et de bienfaisance, pour mieux intégrer la voix des patients à l’écosystème de soins de santé et au cycle d’élaboration des médicaments. Elle est conférencière invitée en mobilisation des patients au Centre for Pharmaceutical Medicine Research de l’université King’s College London et ambassadrice ou mécène de nombreux organismes de bienfaisance en santé et en invalidité, notamment MS-UK et ADD International. Elle s’intéresse particulièrement aux bonnes pratiques de mobilisation des patients, à l’équité, la diversité et l’inclusion en santé et en recherche, et à la participation des patients aux renseignements sur la santé et aux publications scientifiques. Entre autres distinctions, elle a reçu un prix Points of Lights du Bureau du premier ministre du Royaume-Uni pour son travail auprès des communautés de patients, compte parmi les lauréats de PharmaVoice 100 et a été nommée membre honoraire de la Faculty of Pharmaceutical Medicine (Royal College of Physicians, Royaume-Uni) pour sa contribution remarquable aux sciences de la vie. Anecdote : en 2015, la mobilisation de Trishna l’a amenée à participer à une série spéciale en quatre parties de la version britannique de "Danse avec les stars."
Ressources recommandées:
Patient authorship of medical research publications: An evolution, revolution, and solution?
Médias sociaux:
LinkedIn: https://www.linkedin.com/in/trishnabharadia/
Twitter/X: @TrishnaBharadia
Instagram: @TrishnaBharadia
![Janelle Bowden Photo of Janelle Bowden, a moderator at PxP 2023.](https://pxphub.org/wp-content/uploads/bb-plugin/cache/Janelle-Bowden-scaled-circle-250f8bf07bb65e6bab6fd0090693765c-eag50j9swmdo.jpg)
Janelle Bowden
Janelle Bowden, Ph. D., cumule plus de 20 années d’expérience dans le domaine des essais cliniques en Australie et à l’étranger, pour des commanditaires et des établissements, et en tant que consultante. Elle a à cœur d’encourager la participation des consommateurs à la recherche et d’améliorer l’expérience des participants aux essais cliniques. Son entreprise sociale, AccessCR, fournit des services aux organisations du secteur de la recherche. Ce travail finance les activités du Community and Consumer Research Workforce (CCReW), dont la mission est d’aider les personnes qui participent ou contribuent à la recherche médicale et aux essais cliniques ou souhaitent y prendre part, de renforcer leurs capacités, de les mettre en relation et de faire valoir leurs besoins.
![RCWChidebe Runcie C. W. Chidebe, Executive Director, Project PINK BLUE PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/RCWChidebe-circle-66325d79da374bd5ad591191219009c6-puigf1v56mnz.jpg)
Runcie C. W. Chidebe
Executive Director, Project PINK BLUE
Runcie C.W. Chidebe is a patient advocate, global health consultant, researcher, psychologist and the executive director of Project PINK BLUE. He is one of the leading voices advocating for Nigeria government to make cancer control a national health priority. He has been engaged in supporting women battling with cancer, hosting oncology trainings for doctors/nurses, fundraising for indigent patients, cancer awareness, founded Nigeria’s first patient navigation and the first cancer support group in Abuja, Nigeria.
He is a Member, Nigeria’s ministerial committee on the implementation of National Cancer Control Programme (2018-2022), National Cervical Cancer Programme for the Nigeria’s Federal Ministry of Health; Board Member, World Ovarian Cancer Coalition; Global Steering Committee for the Novartis Peer Navigation Programme for metastatic breast cancer, Union for International Cancer Control (UICC) World Cancer Day Advisory Group and an external board member of the Birmingham & Lewisham African & Caribbean Health Inequalities Review, United Kingdom.
As a result of his patient advocacy work in Africa, Runcie has been recognized globally, including nobel Nelson Mandela -Graca Machel innovation award, UICC Young Cancer Leader Award, U.S. Department of State International Visitor Leadership Program (IVLP), Catherine Peugeot Research Award, France; Global Ties U.S. Award for Social Innovation and Change by the U.S. Government, 4o Under 40 in Cancer globally, Distinguished Advocacy Award by International Gynecologic Cancer Society, USA; Faces of Exchange award alongside the Prime Minister of New Zealand Jacinta Ardern and United Nations Secretary General Antonio Guteras by the U.S. Department of State and many other laurels across Europe, America and across Africa.
![AClerc-Hawke Angie Clerc-Hawke PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/AClerc-Hawke-scaled-circle-f38b481788a719d46055750d39a3f65e-bzv9mfn42c8s.jpg)
Angie Clerc-Hawke
Angie Clerc-Hawke has a lived experience of chronic pain and recovery. She founded Our Recovery, a not-for-profit organisation, which is building a social support and learning program for people with chronic pain to engage in a meaningful life. In collaboration with University of Technology Sydney, Angie is co-leading a consumer-led research project that is co-designing and evaluating the Our Recovery program. Angie has a background in medical science. She is also trained and experienced in facilitating participatory processes and consumer involvement in health research and service design.
Ressources recommandées:
![SCrowe Photo of Sally Crowe PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/SCrowe-circle-f96e3e27e679728c893953aac0b4d390-agoqi3nj7x95.jpg)
Sally Crowe
Sally, aujourd’hui à la retraite, a œuvré pendant 30 ans en animation et en gestion de projet en soins de santé et services sociaux au Royaume-Uni et à l’international. Elle a travaillé avec et pour des organisations publiques, privées et de bienfaisance, en s’intéressant particulièrement à la participation des patients et du public aux soins de santé et services sociaux et à la priorisation de la recherche. Elle contribue maintenant à la recherche en tant que membre du public, utilisatrice des services de santé et proche aidante à temps partiel. Sally est aussi mentore qualifiée et aime travailler avec des personnes impliquées dans la recherche d’une manière ou d’une autre.
Trois ressources sur la participation des patients et du public;
- Guide pour les personnes souhaitant prioriser la recherche de manière à inclure les patients, les aidants et le public.
- Normes du Royaume-Uni sur la participation du public à la recherche
- Outil interactif pour explorer les priorités globales en santé et en services sociaux établies par les Partenariats en établissement de priorités de la James Lind Alliance (2016-2020)
![PdeLuca Patrícia de Luca, MSc. PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/PdeLuca-circle-ef3c2cc6510ff13f96076aee8563d36d-b4m806tzpgqh.jpg)
Patrícia de Luca, MSc.
Master of Science from the School of Physical Education and Sport at the University of São Paulo (EEEF-USP), Bachelor's and Teacher's degree in Physical Education from the same institution. Experience in exercise prescription, research, ethics, health education and advocacy, with an emphasis on cardiovascular diseases, diabetes and obesity. She worked voluntarily at ADJ Diabetes Brasil for more than 10 years, and on the Ethics Committee of the Faculty of Pharmaceutical Sciences at USP as a Representative of Research Participants for 8 years. Co-founder of the Brazilian federation of rare diseases (FEBRARARAS). Co-founder of the Cardiovascular Advocacy Group (GAC). Co-Founder and part of the Organizing Committee of the Intersectoral Forum of CCNTs in Brazil (FórumCCNTs). Former president and current Executive Director of the Brazilian Association of Familial Hypercholesterolemia (AHF).
![JElliot Photo of Jim Elliot 2024 Steering Committee member for PxP](https://pxphub.org/wp-content/uploads/bb-plugin/cache/JElliot1-circle-e1457d1620bdf253e83154ba4bd09849-mfgwjkbi96q4.jpg)
Jim Elliott
Jim Elliott De 2012 à 2023 [à temps partiel], Jim Elliott a dirigé les travaux de la Health Research Authority (HRA) sur la participation des patients et patientes et du public à la recherche en santé dans le cadre de son travail de représentant des patients et patientes dans la recherche. Il a mené la création d’un partenariat entre plusieurs grands organismes de recherche visant à faire de la participation des patients et patientes et du public une pratique courante, qui a culminé au lancement, en mars 2022, de l’initiative Shared Commitment to Public Involvement in Health and Social Care Research. Il a finalement pris sa retraite de la HRA vers la fin du mois de mars 2024.
Ayant agi comme personne proche aidante de plusieurs proches atteints de cancer et d’autres maladies pendant de nombreuses années, Jim Elliott a aussi consacré sa carrière à la gestion de la recherche en santé dans les secteurs privé, public et bénévole. C’est la somme de ses expériences qui nourrit sa passion pour pousser l’établissement d’un partenariat de travail entre la patientèle, le public et le milieu de la recherche pour créer, mener et gérer des projets de recherche en santé. À titre de contributeur public, il participe actuellement aux travaux de Cancer Research UK, du Wales Cancer Research Centre et de la All-Wales Cancer Community ainsi qu’à un certain nombre de projets de méthodologie de recherche associés au recrutement de personnes pour participer aux essais cliniques et à leur rétention. Son adhésion à l’organisme caritatif de défense de la patientèle Independent Cancer Patients’ Voice et à la communauté de participation du public Health and Care Research Wales font aussi partie de sa contribution à la recherche.
Toutes les ressources:
Comptes de médias sociaux:
Twitter/X: @drakesyard
Blog: www.drakesyard.co.uk
LinkedIn: Jim Eliott
![REsparza Photo of Rebecca Esparza 2024 Steering Committee member for PxP](https://pxphub.org/wp-content/uploads/bb-plugin/cache/REsparza1-circle-33a128840d7e8f38b5a2c864fd4c1fec-vagxhpz1nbcy.jpg)
Rebecca Esparza
Rebecca Esparza, M.B.A., a survécu à deux cancers (de l’ovaire et de la thyroïde). C’est suite à cette expérience qu’elle a voyagé aux quatre coins du monde pour représenter les personnes ayant survécu à un cancer dans le cadre de multiples initiatives de défense d’intérêt, conférences, comités et forums. Sa survie à long terme à son cancer de l’ovaire (20 ans) l’a aussi motivée à défendre les personnes mal servies et marginalisées, particulièrement celles qui n’ont pas accès aux soins de santé ou à une assurance maladie.
Toutes les ressources:
National Coalition for Cancer Survivorship (NCCS), Ovarian Cancer Research Alliance (OCRA) and the Camden Coalition
![MFalcon Michael Falcon PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/MFalcon-circle-6fc9ec9d35c292be801452bc530fe69d-l3e4dziao1xc.jpg)
Michael Falcon
OTD, OTR/L, MHA
Michael is a humanitarian, licensed to practice occupational therapy, and the Director of Capstone Education and Assistant Professor in the Occupational Therapy Doctorate program at Hawai`i Pacific University. His expertise in international program development and consultation, facilitated through a global community-based perspective, has allowed him to work with communities and interprofessional colleagues from across the globe. He has the honor of being one of the founding members of GAPPA, the Global Alliance of Partners for Pain Advocacy and currently serves on several Executive committees, Working groups and Task forces with IASP. Michael has lived with chronic pain for over 15 years.
Ressources recommandées:
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WHO Policy Brief – Culture Matters - https://iris.who.int/bitstream/handle/10665/344101/9789289052337-eng.pdf
![PGee Photo of Patrick Gee 2024 Steering Committee member for PxP.](https://pxphub.org/wp-content/uploads/bb-plugin/cache/PGee1-scaled-circle-d5b054b446d363df4b01c86384cd5e5d-xzmpqya7d0bf.jpg)
Patrick Gee
Patrick Gee est un consultant en services de santé et un activiste communautaire qui lutte contre les problèmes systémiques comme la pauvreté et les injustices sociales et raciales, et milite pour les réformes de la justice pénale et de l’éducation, et l’équité en matière de santé. Il est le fondateur et chef de la direction agent d’espoir d’iAdvocate, un organisme confessionnel de soins de santé et de bien-être qui sert les communautés de couleur sous-estimées, mal desservies et marginalisées.
Patrick Gee a obtenu un doctorat en justice, droit et criminologie à l’Université américaine (Washington, D.C.) en 2012. Il représente les patientes et patients atteints de néphropathie diabétique. Il parcourt également le pays pour partager son expérience avec les professionnels de la santé, les sociétés pharmaceutiques, les chercheures et chercheurs et la patientèle afin de trouver des solutions et d’améliorer la qualité de vie, l’accès aux soins et les traitements des personnes atteintes de diabète, de maladies rénales ou cardiaques, d’hypertension ou des personnes qui vivent des problèmes d’équité en santé.
Patrick Gee assume plusieurs rôles à responsabilités, notamment celui de président du Conseil de partenariat avec les familles de patients de la Kidney Health Initiative, de représentant de la patientèle du Groupe de travail collaboratif sur la néphropathie diabétique de l’American Society of Nephrology, de président du comité consultatif des familles de patiente et de patients du Quality Insight Network 5, de président du comité directeur et du sous-comité sur la sensibilisation aux problèmes de santé de la communauté MedTech Color Collaborative ainsi que de représentant de la patientèle au sein des groupes d’élaboration des lignes directrices sur les traitements contre la COVID-19, sur les médicaments visant à prévenir la COVID-19, et sur la prise en charge clinique de la COVID-19 de l’Organisation mondiale de la Santé. Il a d’ailleurs reçu la médaille du président de l’American Society of Nephrology pour ses activités de représentation en néphrologie.
Sa devise? « Je suis la voix des personnes sans voix et le visage des personnes sans visage dans la lutte contre les maladies rénales et les injustices en santé. »
Toutes les ressources:
![DGilbert Photo of David Gilbert PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/DGilbert-circle-6ec089849aa40760b0f21303f78a77ef-1pcs92win5y4.jpg)
David Gilbert
Director, InHealth Associates
Pour David, les personnes atteintes de maladies modifiant le cours de la vie sont des leaders naturels qui tirent des pépites de sagesse, de passion et de connaissance de gouffres de souffrance. Utilisateur des services de santé mentale et auteur de The Patient Revolution – how we can heal the healthcare system, c’est un pionnier du leadership des patients (expérience vécue) et le premier patient administrateur du NHS du Royaume-Uni. Il est aussi auteur en résidence à la Bethlem Gallery.
![LHumphris Libby Humphris PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/LHumphris-circle-4989a0db939c75b049825b045c8659b5-rnuq7t6x31me.jpg)
Libby Humphris
Libby Humphris is an experienced public contributor and an honorary research associate at Division of Population Medicine, Cardiff University. She has a keen focus on women’s health issues, shared decision making and evaluating involvement and engagement impact. Libby also lives with multiple rare diseases and co-morbidities, raising awareness of rare diseases and sharing her journey navigating life as a disabled woman on her Instagram blog. This led to Libby becoming more involved and using her voice to break down barriers for other patients and the public. She is the co-lead of public engagement and involvement alongside Dr. Denitza Williams at the Evidence Centre.
![HIlseman Harry Isleman PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/HIlseman-circle-c2034efdb1f2535993d0a5eb4829ff1b-chd460gvuzjb.jpeg)
Harry Iles-mann
Harry is first and foremost a young person who has been living with complex chronic illness and disability since early childhood and the recipient of two liver transplants as a young adult, having spent more than 50 weeks admitted to hospital between 2020-2024 alone.
He is a Health Consumer Leader, disability, complex chronic Illness and mental health Advocate, Digital Health Expert Advisor to the Australian Digital Health Agency, and The Consumer Representative Advisor to the Australian Department of Health and Aged Care’s Digital Health Branch.
His mission is to be an influential agent for positive transformation of experiences and outcomes of health care by leveraging and empowering lived-experience to drive design and decision-making. He works with sector stakeholders - including State, Territory, and Federal Government organisations, not for profits, and peak colleges/bodies - to build practising partnerships with lived-experience and design and implement more valuable, equitable, inclusive and sustainable services, policy, legislation, models of care, research, and strategic decision making in health.
Among other roles, he has formerly been an Australian Youth Advocate For Mental Health (VISIBLE.org.au), a member of the National Children’s Digital Health Collaborative Steering Committee, Chair of the Australian Digital Health Agency’s My Health Record Product Improvement Board Advisory Committee, and a consumer representative on the National Health and Medical Research Council's Consumer Advisory and Health Priority One Working Groups. He has additionally held roles as a grant reviewer for SPHERE and the MRFF, and is a co-contributor to the Health Ageing at Home research initiative with the NSW Smart Sensing Network (NSSN).
![NJefferson NJefferson](https://pxphub.org/wp-content/uploads/bb-plugin/cache/NJefferson-circle-87c372d82d261e2b4a5b639207801696-qjlgew3n2ys8.jpg)
Nichole M. Jefferson, M.J
Nichole Jefferson, a risk management and compliance analyst for Wells Fargo, currently resides in Dallas, Texas. When diagnosed with end-stage renal disease in 2003, not only was she unaware of what it meant, she had no idea she was at high-risk for developing kidney disease. Though Nichole experienced both forms of dialysis (HD and PD), she preferred the convenience peritoneal dialysis offered. On June 12, 2008, she received the gift of life, a kidney transplant. Due to the many obstacles she faced following her transplant, Nichole realized that a transplant was simply another form of treatment and not a cure. This realization sparked her quest for knowledge, which later initiated her enthusiasm for advocacy. This enthusiasm and advocacy are what assisted Nichole in her fight for her second transplant which she had on April 24, 2024.
Nichole's enthusiasm for advocacy increased even further when she realized that not many people understood the prevalence of kidney disease in the Black community. This discovery encouraged her to seek additional knowledge to share with her community and underserved populations. Soon thereafter she began speaking with legislators regarding the need for early detection and other issues relating to chronic kidney disease. Nichole has participated in numerous opportunities to engage in the renal community, enabling her to expand her resources and share her kidney journey with others. Nichole continues to advocate for her own health and provide awareness to others.
![IJordan Isabelle Jordan PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/IJordan-circle-a979aa3eef5b93c9442d2229a428d992-eyqf6kp18m34.jpeg)
Isabel Jordan
Isabel Jordan draws from her lived experience to provide leadership and guidance in health care and health care research to support meaningful patient partnership practices that are aligned with patient-oriented research
Isabel was a founding member of the Rare Disease Foundation. Under her leadership, the organization built partnerships between families and researchers through their Research Micro-Grant Program. Isabel is the Strategic Lead in Patient Partnerships in the Chambers Lab at Dalhousie University as well as the Patient Partnership advisor for SKIP, a knowledge mobilization network that seeks to bridge the gap between treatment practices and evidence-based solutions for children's pain in Canadian health institutions.
She is the mother of two disabled young adults living with pain and has drawn on her lived experience in rare disease and disability to become a strong advocate for patient partnership in research. She’s been interviewed on CBC radio, written blog posts on patient engagement, co-authored charters with the Patients Included movement, is a member of numerous health research committees, and has spoken at national and international conferences about collaborations between researchers and patients. She has also received the Canadian Organization for Rare Disorders Rarity Award and the Patient Safety & Quality Council Quality Award in Advancing the Patient Voice.
Bluesky - https://bsky.app/profile/seastarbatita.bsky.social
Toutes les ressources:
https://diversity-tapestry.com/tapestry/bc-support-unit-tapestry-project/#/nodes/1615?sidebar=info
![SLukeman Sarah Lukeman PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/SLukeman-circle-d5ed5716c1b5d47bcc1d926e52550134-16sqpa0zv7kg.jpg)
Sarah Lukeman
Sarah Lukeman is a cancer survivor, clinical trial participant and experienced health consumer advocate and representative. She trained as a Chemical Engineer, worked in the mining industry, was elected to local government for a term, and is a Tai Chi instructor. She lives in regional NSW and advocates for equitable access to healthcare and a just transition for mining communities
Sarah is a consumer buddy for several discovery science cancer researchers in Australia and been a member of funding panels and conference organising committees. She is regularly invited to speak on Consumer Involvement in Research (CIR) and has co-designed and co-presented training on CIR and the recently launched patient-centred template for informed consent to participate in clinical trials in Australia.
Sarah is patient representative on many committees covering women’s health, clinical trials and cancer. She is on the Board of Cancer Council NSW and was on the Executive of Cancer Voices NSW for 6 years.
References:
InFORMed: Redesigning Consent to Research (informedpicf.com.au)
tools for working together – Doing Research Together
CCI Handbook – Western Australian Health Translation Network (wahtn.org)
Consumer involvement and engagement toolkit (clinicaltrialsalliance.org.au)
![AMcKenzie Anne McKenzie AM PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/AMcKenzie-scaled-circle-4a66343a8c5f2b939e68da2629f5dd45-7g4c5fhap1ol.jpg)
Anne McKenzie AM
Anne McKenzie AM has held professional and voluntary roles as a consumer advocate for the past three decades. She has worked in research organisations to increase community involvement in research since 2004, when she commenced at The University of Western Australia and The Kids Research Institute Australia.
Anne currently provides consultant services to a range of organisations including universities, health and research organisations, government and non-government agencies and consumer organisations. Since 2007 Anne has developed and delivered training workshops on implementing consumer and community involvement to researchers, clinicians, and consumers. Over 3700 attendees from across Australia have attended 190 workshops.
Anne serves on key national health and research committees as a community member and is regularly invited to present at national conferences and seminars. In 2015 Anne was appointed to the Order of Australia for her advocacy work in health services and research. She received the NHMRC’s 2021 Biennial Award for Consumer Engagement and the Advocacy Achievement Award from Australasian Academy of Cerebral Palsy and Developmental Medicine in 2022.
Toutes les ressources: https://www.thekids.org.au/be-involved/help-shape-our-research/
![RMartens Photo of Rae Martens 2024 Steering Committee member for PxP.](https://pxphub.org/wp-content/uploads/bb-plugin/cache/RMartens1-circle-4854a24be9c6d482dd18415625ec14e5-0zi3csetpb95.jpg)
Rae Martens
Vivant à Calgary en Alberta (Canada), Rae Martens représente des patientes et des patients en situation de handicap. Elle a non seulement été une partenaire de recherche dans plusieurs contextes à titre de parent d’un enfant en situation de handicap aux besoins médicaux complexes, mais a aussi survécu à deux cancers. Lorsqu’elle n’est pas partenaire de recherche, elle agit comme courtière du savoir pour établir des ponts entre le milieu de la recherche et les personnes ayant une expérience concrète, tout en s’assurant que les partenariats qui se nouent soient sains.
Toutes les ressources:
L’Involvement Matrix (matrice de participation)est un outil qui permet aux gestionnaires de projet et aux personnes expertes par l’expérience d’entamer un dialogue régulier portant sur leurs idées, leurs besoins et leurs attentes. Elle permet aux personnes participantes de passer un accord clair quant à la nature de la participation des personnes expertes par l’expérience à un projet.
Voici également une série d’outils de connaissances sur la mobilisation des patients et patientes et de leur famille créés conjointement et applicables à une diversité de contextes de recherche accessibles ici (en anglais): https://kidsbrainhealth.ca/training/training-career-development/family-engagement-in-research/fer-student-projects/
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Zac Miles
Zac Miles is an Identified Peer Support Worker for the Persistent Pain Management Service on the Sunshine Coast, Australia. He has lived experience in persistent pain as a carer and is a proud Aboriginal man from the Dunghutti dans vos favoris et de vous Anaiwan tribes in Australia. He loves working closely with his culture and uses his life experiences in the effort to make a positive change in his community. He has also recently been invited to be a part of the Queensland persistent pain clinical network steering committee.
![VMohabir Photo of Vina Mohabir 2024 Steering Committee member for PxP.](https://pxphub.org/wp-content/uploads/bb-plugin/cache/VMohabir1-circle-f8555f10f48199d03c22df25eee3db7a-miub53qh79jg.jpeg)
Vina Mohabir
Vina Mohabir Souffrant de douleurs chroniques depuis un accident survenu en 2010 durant son adolescence, Vina Mohabir (elle) a aussi surmonté récemment un cancer du sein de stade III. Elle se passionne à raconter son histoire et à défendre les besoins uniques des jeunes en situation de handicap, issus de la diversité et à faible revenu. La participation de la patientèle est une autre de ses passions, qu’elle s’efforce d’accroître dans la recherche sur la douleur ainsi que dans les politiques et les pratiques cliniques connexes au Canada et dans le monde. Vina Mohabir travaille présentement au laboratoire de recherche sur la douleur iOUCH de l’Hospital for Sick Children de Toronto. Elle commencera bientôt ses études doctorales, où elle étudiera la mise en œuvre d’une application d’autogestion de l’anémie falciforme, sous la supervision des Dres Jennifer Stinson et Chitra Lalloo. Enfin, elle est une fière partenaire d’organismes tels que Solutions pour la douleur chez les enfants (SKIP), Santé Canada, le Réseau de douleur chronique, la Société canadienne de la douleur, l’Association internationale pour l’étude de la douleur (IASP et les unités de soutien à la recherche axée sur le patient de la SRAP des Instituts de recherche en santé du Canada à l’échelle du pays.
Toutes les ressources:
1. Reflections on patient engagement by patient partners: how it can go wrong
![CMunt Photo of Christopher Munt PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/CMunt-rotated-circle-6fafe7523b551985523471d04bacafd9-br0qd14hct5v.jpg)
Christopher Munt
Ma carrière a commencé en 1985. J’ai eu le privilège d’occuper des postes en travail social, en enseignement universitaire et en recherche ainsi qu’à la direction de projets des programmes de transformation des NHS, en développement communautaire et dans le soutien d’organisations dirigées par les utilisateurs des services. Dans un poste particulièrement digne de mention, j’ai travaillé pour l’OMS au Moyen-Orient; j’aidais des collègues à adopter une offre de services thérapeutiques en santé mentale mieux inscrite dans la communauté. J’ai été reçu membre de l’Ordre de l’Empire britannique en 2011 pour mes services dans le domaine de la santé mentale. Je suis aussi impatient de trouver de nouvelles occasions de réconcilier la sagesse des professionnels et l’expérience vécue. Je crois que la profession de travailleur social intègre l’expérience vécue dans ses valeurs de défense des intérêts, de justice sociale et de respect sans condition.
Tout en menant ma carrière, j’ai dû vivre avec une grave maladie mentale d’intensité variable qui m’a parfois amené à solliciter des services communautaires et hospitaliers. Ces épisodes ont cristallisé pour moi l’effet concret des services – bon, mauvais ou neutre – sur les vies des personnes vulnérables et en détresse. J’utilise ces expériences comme un outil et non comme une arme. Ma vérité et les expériences de mes pairs guident mon approche dans la collaboration avec les professionnels, avec une remise en question constructive, mais libre d’animosité ou d’hostilité.
Ressources recommandées:
https://intppinetwork.wixsite.com/ippin/post/creating-a-safe-space-for-the-public-voice
![SMuthuramalingam Photo of Shyamsundar Muthuramalingam 2024 Steering Committee member for PxP.](https://pxphub.org/wp-content/uploads/bb-plugin/cache/SMuthuramalingam1-circle-781bf3f491e5b6c041d340d507f9f590-io5kpgtnqy8a.jpg)
Shyamsundar Muthuramalingam
Titulaire d’un doctorat en chimie et possédant une expérience concrète à titre de greffé du rein, Shyamsundar Muthuramalingam est une figure de proue de l’Australie en participation de la patientèle à la recherche médicale et sur la santé. La nécessité de composer avec une maladie rénale et l’hémodialyse a nourri sa passion pour la représentation de la clientèle et l’engagement communautaire. Shyamsundar Muthuramalingam a contribué de manière importante aux stratégies de mobilisation d’organisation clés telles qu’ANZDATA, SAHMRI, The George Institute for Global Health et Kidney Health Australia. Il joue aussi un rôle important pour défendre la clientèle dans les programmes de recherche, la mise en œuvre d’études et l’application des résultats pour améliorer les soins. Comme membre du comité directeur de la conférence PxP, il fera part de ses connaissances sur la consolidation des partenariats avec la patientèle en recherche pour mettre l’accent sur l’incidence des expériences concrètes dans les essais cliniques. Son travail incarne l’éthique « pour les patients, par les patients », contribuant ainsi de manière déterminante aux progrès en recherche axée sur le patient.
Toutes les ressources:
1. Consumer Involvement & Engagement Toolkit
2. Resources to evaluate and improve Community Advisory Committees
3. A curated selection of resources to support and involve consumers in research.
Comptes de médias sociaux:
Twitter/X: @shyamrith
LinkedIn: Shyamsundar Muthuramalingam
![DC39134,Jack Nunn Jack Nunn PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/JNunn-circle-02193079662df7f3ca90d5f297f1ce50-2u3a6xl7mtv5.jpg)
Jack Nunn
Jack Nunn’s research area is in creating and evaluating equitable and ethical ways for people to get involved in all aspects of research and science. Jack is the founder and Director of the not-for-profit education organisation ‘Science for All’, working to involve people in doing research by building partnerships between the public and researchers (ScienceforAll.world). From 2022-2024, Jack was the Public Involvement Strategic Lead at La Trobe University (part-time, fixed-term). Jack completed a PhD in 2021 in the department of Public Health at La Trobe University, where he explored genomic research and how people can be involved in shaping the future of this research. Jack is a member of Australia's NHMRC 'Consumer Statement Advisory Committee'; Member of the Cochrane Consumer Executive; Co-Chair of Citizen Science & Open Science Community of Practice; and a member of the 'Standardised Data on Initiatives (STARDIT)' Steering Committee.
Toutes les ressources:
- This site summarises the project Standardised Data on Initiatives (STARDIT): ScienceForAll.World/STARDIT
- I was involved in co-creating these guidelines which are a good resource: https://www.australiangenomics.org.au/projects/involve-australia-public-involvement-in-genomic-research/
- These are some learning resources I created / adapted for La Trobe University, some of them produced by Science for All: https://archive.org/details/involving-people-in-research-learning-resources-v-4-2024.03.20
![SParavan Stephanie Paravan PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/SParavan-circle-30fd0b05ecb7b56713a58e843df36bcf-owl3rypdzhf8.jpg)
Stephanie Paravan
Stephanie’s journey into healthcare began in 2013 with the sudden illness of her youngest child. As his condition progressed Stephanie realized the difficulties of navigating the medical system as a parent. Her son’s condition advanced and he is now part of both Complex Care and Palliative Care in Ottawa. Stephanie used her experience to become involved as a Family Partner in various organizations. This includes Co-chairing the former Champlain LHIN PFAC, sitting on the Steering Committee for the Kids Come First Health Team and supporting the launch of Kids Health Alliance. Most recently she was on the Working Group that created the first Health Standard for Pediatric Pain Management, worked on various other projects with SKIP (Solutions for Kids in Pain) as well as advocating and influencing changes in the Judicial and Court System to better address needs of non-verbal people. Currently Stephanie is Co-Chair, Pediatric Pain Management Practice & Policy Network.
![TSmith Thomas Smith PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/TSmith-circle-b393844069eb21a76e47f83820728731-r5h2iv7gyj0l.png)
Thomas Smith
EUPATI Fellow, European Health Parliament member, Non Executive Director, Independent Chairman and Life Sciences Patient Engagement Expert.
A member of the European Health Parliament and a EUPATI Fellow, Thomas is an internationally recognised consultant operating with life sciences companies all over Europe. He works with regulatory bodies like the European Medicines Agency as an Expert Patient Reviewer and the Health Research Authority as a member of a Research Ethics Committee. Tom’s personability, objective thought, and conviction has led him to work with major national and global broadcast media, the pharmaceutical and MedComms. Industry, Clinicians and the governance of NHS Foundation Trusts. Tom combines experience of Policy, Clinical Research and media representation to emphasise that meaningful patient engagement is the key to sustainable innovation in healthcare. Before his career in Patient Engagement Consulting began, Thomas was a senior leader in local government and responsible for the effective delivery of £87M worth of social regeneration services per annum.
![DStewart Photo of Derek Stewart PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/DStewart-circle-1f5dc287e1b13c47316e0f1ad6e5c6ca-4sqtp5cw6v2m.jpg)
Derek Stewart
Né il y a trop longtemps, à Ayr, en Écosse, Derek Stewart a reçu un traitement efficace contre un cancer de la gorge en 1995. Ancien enseignant, M. Stewart a travaillé avec des jeunes qui avaient de la difficulté à s’adapter au système d’éducation général à Glasgow, puis dans le Nottinghamshire, où il vit maintenant. Il s’est par la suite impliqué activement dans différents aspects de la participation des patients et de la défense de leurs droits à l’échelle locale, nationale et internationale, à titre de président fondateur du groupe de liaison avec les consommateurs du National Cancer Research Institute, au Royaume-Uni. Il a présidé un Groupe de soins primaires et le Partenariat de Nottingham contre le crime et les drogues, ce qui lui a valu le titre d’officier de l’Ordre de l’Empire britannique en 2006. Derek Stewart s’intéresse maintenant à la recherche sur la méthodologie en santé et en soins de santé, particulièrement pour rendre toutes les études aussi pertinentes et efficaces que possible.
En 2020, M. Stewart a été nommé professeur honoraire à l’Université nationale d’Irlande à Galway. Il est conseiller stratégique au Health Research Board – Trials Methodology Research Network (HRB-TMRN) en Irlande.
Actuellement, M. Stewart copréside le groupe sur la transparence en recherche de la campagne #MakeItPublic de la Health Research Authority (HRA) du Royaume-Uni. Il est aussi administrateur du registre ISRCTN Registry et membre de Cancer Research UK (CRUK).
Médias sociaux:
X (formerly Twitter): @DerekCStewart
Ressources recommandées:
Que veut-on dire par « être actif en recherche »? (en anglais seulement)
L’histoire de la participation du public au R.-U. – conférence d’un témoin (en anglais seulement) – a witness seminar
![KStrain Photo of Kimberly Strain, speaker at 2024 collaborative webinar series between PERA and PxP.](https://pxphub.org/wp-content/uploads/bb-plugin/cache/KStrain-scaled-circle-5a948e0f57917ba6e71f1696c12867c0-2btu93h7yezd.jpg)
Kimberly Strain
Kimberly Strain vit en Colombie-Britannique (Canada), et est patiente partenaire dans diverses initiatives depuis 2012, notamment comme membre de comités, patiente partenaire en recherche, membre du Patient Voices Network et coauteure des chartes Patients Included. Elle siège aussi au conseil d’administration de l’Institut pour la sécurité des médicaments aux patients du Canada et a récemment été coprésidente du comité consultatif de patients et proches aidants de Pour la douleur chez les enfants (SKIP). Dans ses temps libres, Kimberly se passionne pour la photographie et les arts.
![NSwarup Nidhi Swarup PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/NSwarup-circle-16a6fd4938a9a9b27ef75899fd8ad8b9-sowyzrkexnj6.png)
Nidhi Swarup
Founder and President of the Crohn’s & Colitis Society of Singapore
Nihdi is the Founder and President of the Crohn’s & Colitis Society of Singapore since 2012. The charity focuses on patient education, public awareness, patient support group and promotes research into Crohn’s Disease, Ulcerative Colitis, and related inflammatory bowel diseases (IBD). She has facilitated the formation of IBD Patient Support Groups in Thailand, Malaysia, Philippines, and India. She has been interviewed by leading Newspapers, TV, and Radio channels. She is the anchor for the Podcast on Spotify, Apple and other channels ‘Life Takes Guts with Nidhi Swarup’
As the President of the Rotary Club of Raffles City 2016-17 she raised S$160,000 to invite experts in Chromoendoscopy from USA to train about 100 Gastroenterologists from nine countries of the Asia Pacific Region.
Between 2011 and 2017, she was diagnosed with multiple chronic conditions and took 10 tablets every day. Since 2019, she has been on zero medication. She likes to share her story of ‘hope’ and the importance of adherence to medication, work-life balance, and healthy lifestyle. An established Healthcare Thought Leader, she has been representing the Patient Voice as a panelist, jury member, speaker, and moderator at various local, regional, and global conferences.
Nidhi has two Master’s Degrees: one in Operations Research and the other in Finance. She also has a Graduate Certificate in Professional Counselling.
Nidhi has co-authored the following
- Forming a support group for people affected by inflammatory bowel disease, Patient Preference and Adherence, Dove Medical Press, Feb 2017.
- Hand in Hand: Tackling the burden of mental health issues in those living with Inflammatory Bowel Disease in Asia Pacific, Asian Organization for Crohn’s and Colitis (AOCC), 2019.
- Landscape of inflammatory bowel disease in Singapore, Intestinal Research, 2022.
Nidhi Swarup is the Founding Chair, Alliance of Patients’ Organizations Singapore Ltd (APOS). This organization has a multi-stakeholder board that was registered on 20 September 2023.
CURRENT APPOINTMENTS
- Founding Chair | Alliance of Patients’ Organizations Singapore Ltd
- Founder and President | Crohn’s & Colitis Society of Singapore
- WHO Patients for Patient Safety Network | World Health Organization
- National Pharmacy Strategy Advisory Council | Ministry of Health, Singapore
- Consumer Panel | Agency for Care Effectiveness, Ministry of Health, Singapore
- SingHealth Patient Advocacy Network
- Office of Patient Engagement Strategic Committee | LKC School of Medicine
- Patient & Family Advisory Council | National University Health System
- Strategic Advisory Board | Patient Focused Medicine Development
- Global Clinical Trial Experts’ Panel | Boehringer Ingelheim
![SUwan Simone Uwan PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/SUwan-circle-a6b05075f8b37646e36fac5ad5615363-v8mehocyjd2g.jpg)
Simone Uwan
Co-Founder and CEO of Sickle Cell Medical Advocacy Inc.
Simone Eastman Uwan MD (known to the Sickle Cell community as Dr. Simone) was born in Guyana South America and migrated to the United States with her family when she was 14 years old. She had a love for science and math and attended “Clara Barton High School for Health Professions” in Brooklyn, NY. She was awarded a scholarship to attend Barnard College at Columbia University in Manhattan, NY. There she majored in biology and pre-medical Sciences. It was during her college years that she was diagnosed with Sickle Cell disease, even though she had active symptoms all her life.
After graduating from college Dr. Uwan moved to northern California where she was accepted to Stanford University school of medicine. There she won both a “Medical Scholars” award and a “Pfeiffer Scholars” award for research in red blood cell disorders with the Stanford Hematology Research Department. Dr. Simone then did an internship in 1997 at Children’s Hospital Oakland Research Institute studying early signs of Acute Chest Syndrome in the blood of patients with Sickle Cell disease. Also, for several summers during medical school during the 1990s, Doctor Simone participated in the Northern California Comprehensive Sickle Cell disease camp, where she mentored patients and was a part of the Medical Staff caring for her Sickle Cell community.
She was accepted to a Stanford affiliated Family Practice residency program in 2001, and during her senior year of residency she worked treating patients at the Comprehensive Center for Sickle Cell disease in Oakland CA. Throughout her career as Family Practice physician, she has had the honor of caring for sickle cell patients with the compassion they often long for.
While her Sickle Cell disease has caused an early retirement from her clinical practice, her life is vibrant. She has developed an active presence on social media where she teaches a global audience about Sickle Cell. She created a group called “Sickle Cell Stories with Doctor Simone” on Facebook where she teaches many health management strategies not covered in the textbooks. Her teaching videos can be found on her YouTube channel “Sickle Cell Medical Advocacy-Dr Simone”. Dr. Simone is also a two-time number ONE Bestselling author of the book “A Doctor in a Patient’s Body” and her second book entitled “ALL Rise: The Sickle Cell Community vs. The Medical Establishment”. In 2021 Dr. Simone started a charity organization, Sickle Cell Medical Advocacy Inc. training motivated members of the community to become medical advocates proficient in the US guidelines for the management of acute pain crises. Advocates virtually accompany patients to the emergency room and hospital and advocate on their behalf for quality care.
Dr. Simone is determined to reshape the conversation about Sickle Cell disease management with her colleagues in the healthcare community so that people with Sickle Cell disease can live longer and thrive in spite of their disease.
![KVanMeeteren Karen van Meeteren PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/KVanMeeteren-circle-506cab5cbd86133d1673a7b1d8391ff0-d7t8wyixmh6e.jpg)
Karen van Meeteren
Karen van Meeteren is a passionate professional with over ten years of experience in promoting patient participation, leveraging her unique perspective as a parent of a child with complex care needs combined with her background in science education and communication. Karen is driven to connect research and practice in ways that mutually reinforce each other.
Her work encompasses both substantive projects, such as addressing parental burnout and developing tools to measure language comprehension in non-verbal children, as well as projects focused on effective collaboration, including the development of the involvement matrix and the training of researchers and experts by experience. Karen strives to make a lasting impact through her work in healthcare and in the lives of people with disabilities and their parents.
Ressources recommandées:
Designing a tool to support patient and public involvement in research projects: the Involvement Matrix
CP&Ontwikkeling: A co-created (Dutch) website based on the knowledge from the PERRIN study about the development of people with cerebral palsy in which this knowledge is translated to be used in daily life
Patients and Families as Partners in Patient-Oriented Research: How Should They Be Compensated?
![SWalker Sophia Walker PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/SWalker-circle-366f3929373b0f1d150a3d01cc0c3c43-54pihzvnaoeq.jpg)
Sophia Walker
Sophia Walker has built on her experience of living with type 1 diabetes since the age of six to advocate for the increased role of the patient perspective in treatment development, healthcare delivery, and outcomes research. She has a background in clinical trial management, pharmaceutical market access, and commercialisation and communication strategies. She was previously the Accelerated Access Lead at JDRF UK, the type 1 diabetes medical research charity. She holds an MSc in Health, Community, and Development from the London School of Economics.
![LWilhelm Photo of Linda Wilhelm PxP 2024 Speaker](https://pxphub.org/wp-content/uploads/bb-plugin/cache/LWilhelm-circle-51c79133a9ec8b3fcd35d693358ba89c-46msdfp0bwkg.jpg)
Linda Wilhelm
Linda Wilhelm est présidente de l’Alliance canadienne des arthritiques, une organisation nationale de patients bénévoles qui travaille à améliorer la vie des personnes atteintes d’arthrite depuis 2002. Elle est coprésidente du comité directeur du Réseau de douleur chronique de la Stratégie de recherche axée sur le patient (SRAP), et membre du comité consultatif de patients du réseau. Elle est aussi membre de l’Alliance pour des données probantes de la SRAP. Mme Wilhelm a participé à des comités consultatifs d’experts de Santé Canada et à de nombreux congrès sur l’accès aux médicaments et les enjeux de sécurité des médicaments. Par le passé, elle a été membre du Comité consultatif d’experts sur la vigilance des produits de santé et du comité directeur du Réseau sur l’innocuité et l’efficacité des médicaments. Mme Wilhelm défend activement l’accès aux traitements et la qualité des soins pour tous les patients à l’échelle régionale et nationale depuis plus de vingt ans et a présidé le conseil d’administration de la division du Nouveau-Brunswick de la Société de l’arthrite. Elle vit avec la polyarthrite rhumatoïde depuis plus de trente-cinq ans. Elle a reçu la Médaille du jubilé d’or et la Médaille du jubilé de diamant de la Reine Elizabeth II et le prix Qualman-Davies en leadership communautaire en matière d’arthrite de l’Alliance de l’arthrite du Canada en 2015.
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