EVENTS 2025
Steering Committee 2025
We are hugely grateful to the 2025 PxP Steering Committee for their significant guidance and expertise. All members of the Steering Committee identify as patient partners. PxP 2025 is supported by CIHR-IMHA.
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.
Recommended Resources:
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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
- Remuneration of African patient partners is an important tool for health justice - https://doi.org/10.1136/bmj.q2675
Maalvika Bhuvansunder
Maalvika Bhuvansunder is a 26-year-old forensic psychologist specializing in suicide prevention in India. In 2016, she was diagnosed with Crohn’s disease. Her personal experience with this illness has motivated her to become an advocate for mental health, particularly regarding its impact on individuals living with chronic conditions.
Currently, she serves as the Mental Health and Peer Support Lead at the IBD Patient Support Foundation in India. Maalvika represented the foundation at the IBD Vizag 2024, which is the 8th National Meeting of the Colitis and Crohn's Foundation of India (CCFI). In 2022, she was a fellow with the Crohn’s and Colitis Young Adult Network and continues to engage with them for patient conferences (Generation Patient) and other advocacy initiatives.
Resources:
- Guide for international students with IBD as a part of the 2022 CCYAN fellowship https://drive.google.com/file/d/1iG-VTyjkJMwfBQWoMhQOv2JI_e4zZD6R/view?usp=sharing
- Speaker at the about IBD Podcast https://open.spotify.com/episode/5S1cB8AtA6lLz9mWTO4ijJ
- Research paper where Nikhil (founder of IBD India) is involved in https://www.sciencedirect.com/science/article/pii/S2949923224000047
- IBD India Newsletter https://img1.wsimg.com/blobby/go/c77177d4-d657-47b6-a2e1-455c5759ea5d/IBD-India-Newsletter-Q1-2025-English-PDF-Compr.pdf
- IBD INDIA was recently featured in the European Federation of Crohn’s and Ulcerative Colitis Association’s (EFCCA). https://efcca.org/sites/default/files/efccamagazine-02-2025-web%20%281%29.pdf
Social Media
Linkedin: https://www.linkedin.com/in/maalvika-bhuvansunder/
Instagram (IBD India Page): @india.ibd
Janelle Bowden, PhD
Janelle Bowden, PhD, is founder of AccessCR, an Australian social enterprise providing services and support to research-engaged organisations around clinical trial operations and consumer engagement and involvement in research. These services fund AccessCR’s activities to support, build capacity in, connect and advocate for the needs of people looking for, taking part in and contributing to medical research and clinical trials, a community we’ve nicknamed the Community and Consumer Research Workforce (or CCReW, pronounced ‘croo’).
Connect with me on LinkedIn https://www.linkedin.com/in/janellebowden/
Learn about the publications I’ve collaborated on: https://orcid.org/0000-0003-3993-5551
Learn more about CCReW: https://ccrew.accesscr.com.au/
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.
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).
Member of the Steering Committee of the randomized clinical trial "Effect of Brazilian Cardioprotective Diet adapted and supplemented with phytosterols and/or krill oil in patients with familial hypercholesterolemia: DICA-HF study";
Member of the Research Ethics Committees of the Faculty of Pharmaceutical Sciences of USP and "Hospital do Coração" of Sao Paulo, Brazil, representing research volunteers/community members.
References
Letisha Living
Letisha Living resides on the Gold Coast, Australia. She is a survivor of stroke and parent/carer of 2 children with complex needs. Letisha is passionate about amplifying the patient’s voice in health, medical and stroke research. She is on the Board of the Australian Stroke Clinical Registry (AuSCR) and is the current Chair of Gold Coast Hospital and Health Service Consumer Advisory Group where she sits on several committees including Gold Coast Health Board, Research Committee, Clinical Governance, Partnering with Consumers and Diversity & Inclusion.
Letisha has participated in over 25 research studies partnering in all research phases including co-design as a participant, and as part of the investigator team. She was a research participant in a project that helped shape the Gold Coast Health Consumer Engagement in Research Framework (CEIR).
Social Media
Paul Mendoza
Mr. Paul Albert Mendoza, a distinguished advocate for psoriatic disease and President of Psoriasis Philippines. Paul also serves as the secretary of the International Alliance of Patients’ Organizations and leads Psoriasis Asia Pacific.
Paul's commitment to health advocacy is evident through his active participation in health forums and initiatives across the Asia-Pacific region and globally, where he champions the right to health. He is also a member of the Philippine Alliance for Patients with Chronic Illness, the Healthy Philippines Alliance, and the Alternative Budget Initiative for Health. In these roles, he advocates for non-communicable diseases (NCDs), persons with disabilities, access to medicine, patient rights, and other critical health agendas with the Philippine Government.
Paul has been actively involved in the Health Technology Assessment process for seven years and recently graduated as a Fellow of the European Union Patient Academy Training Institute in Spain.
Paul’s expertise and advocacy for equitable health care make him an influential voice in today’s discussion.
Linkedin profile: Paul Mendoza | LinkedIn
Greg Merritt
Greg Merritt grew up in rural Loami, Illinois where he escaped poverty through education. He is the first in his extended family to receive a college degree. He received his PhD from Michigan State University in Higher Education Administration (focused on Teaching and Learning) and his Bachelor’s in Psychology from Bradley University. He spent more than 30 years working in university housing.
After experiencing a sudden cardiac arrest and a heart attack in 2012, he decided to live his gifted second life in a new second career as the Founder of Patient is Partner, LLC, where he brings his experience as an educator, a community builder, and a “questionologist” to the healthcare world and hopes to find ways to create authentic partnerships between patients, their families, and care partners and healthcare clinicians and researchers.
He has spent the past six years studying, speaking, and writing on the topic of authentic patient partnerships, both in research and practice, and sits on numerous patient advisory boards.
He has been a speaker at numerous meetings and conference proceedings including the American Association of Cardiovascular and Pulmonary Rehabilitation (AACVPR), and State Society of Cardiovascular and Pulmonary Rehabilitation (CVPR) meetings in Michigan, North Carolina, and Ohio. He has also presented at numerous conferences representing the patient voice in research and practice in areas beyond cardiac rehabilitation. He is grateful to his bride of 20 years, and his three dogs who keep him walking.
Resources
- I’m committed to this group that is international vision https://www.patientrevolution.org/
- New funded program that has a “patient-partnered mentor” as part of scholar program https://melstar.med.umich.edu/patient-partners
- I co-lead the Michigan Institute for Clinical and Health Research’s Patient Partners Program - https://michr.umich.edu/building-new-paradigms-together-engaging-patient-partners-in-research/
- https://pcornet.org/patient-partners/
- https://www.pcori.org/about/pcoris-advisory-panels/advisory-panel-clinical-trials/biographies-advisory-panel-clinical-trials
Anna Samson (they/she)
Anna Samson (they/she) is a desi, queer, disabled person living in what is colonially known as Toronto, Canada. They are a writer, poet, patient partner, and an advocate for disability and mental health. They have ankylosing spondylitis, fibromyalgia, premenstrual dysphoric disorder and more. They have experienced AS and fibro symptoms since childhood but it worsened during their teens. Anna now uses a cane full-time and frequently uses a walker.
They have a Bachelor of Arts in English and use their writing and communication skills to create content about their conditions and how they affect their life. They are passionate about using their intersectional lived experiences to raise awareness for chronic illnesses, disabilities, mental health, and patient engagement in research. They were also a Social Health Award Finalist in 2022 for Advocacy Trailblazer!
Anna has completed the Patient Engagement in Research Training Program through the Canadian Arthritis Patient Alliance and is a part of several research projects. They have also completed the Patient Leader Certification Program from the Social Health Network. Additionally, as a Patient Engagement Research Ambassador with the Institute of Musculoskeletal Health and Arthritis under the Canadian Institutes of Health Research, Anna champions patient engagement at the forefront of research, amplifying perspectives from people with lived experience.
Follow along with their advocacy on social media @DisabilityWithAnna
Resources
- Paper on the benefits, barriers, and recommendations for youth engagement in health research - https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-024-00607-w
- Interview with the Arthritis Broadcast Network about how inclusive research with diverse patient partners leads to better healthcare- https://www.youtube.com/watch?v=5v_mJiXA0Lw
Simon Stones, PhD
Simon (he/him) is an award-winning Medical Communications Specialist and a globally respected advocate for patients and carers, inspired by his own experiences with chronic inflammatory conditions since childhood. With over a decade of experience, he has helped to transform the way patients are involved in healthcare services and research across public and private sectors. Recognised as one of the UK’s top 100 most influential people with disabilities in both 2019 and 2020, Simon continues to champion meaningful change on an international stage. In 2023, he earned the inaugural Rising Star Award from the International Society for Medical Publication Professionals (ISMPP). Currently, Simon is the Chair-Elect of the European Alliance of Associations for Rheumatology Patient (EULAR PARE) Committee and serves as Scientific Director, Patient Engagement, at Amica Scientific, where he combines passion and expertise to champion the integration of meaningful patient engagement in medical affairs across the biopharmaceutical industry.
Recommended links
- Patient authorship of medical research publications: An evolution, revolution, and solution? https://onlinelibrary.wiley.com/doi/epdf/10.1002/leap.1607
- Patients in publications course: https://wecanadvocate.eu/patients-in-publications/
- ISMPP InformED Podcast on patients as a key stakeholder for scientific conferences: https://megaphone.link/FPMN7134181591
Karen van Meeteren
Karen van Meeteren is a passionate professional with over eleven years of experience in promoting patient involvement, 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.
At daytime she works as an advisor and trainer in research involvement at INVOLV (www.involv.nl). At nighttime she works as a patient partner on both substantive projects, such as addressing parental burnout, developing tools to measure language comprehension in non-verbal children and quality registries in health care, as well as projects focused on effective collaboration, including the development of the involvement matrix. Karen strives to make a lasting impact through her work in healthcare and in the lives of people with disabilities and their relatives.
Joab Wako
Joab Wako is the Founder and Executive Director of Transplant Education Kenya (TransplantEd), an organization dedicated to raising awareness about organ donation and transplantation in Kenya. Under his leadership, TransplantEd has reached over 70,000 people through in-person events and social media campaigns over the past eight years. The organization has also partnered with other NGO's and transplant centers to facilitate impactful community outreach programs. Joab's journey as a health advocate began after living with chronic kidney disease for ten years and receiving a life-saving kidney transplant from his older sister, Nerima, eight years ago. This transformative experience inspired his commitment to health advocacy, leading him to become a lived-experience advocate. As a kidney transplant recipient, Joab is passionate about fostering hope and building support networks for individuals facing organ failure. He remains dedicated to advocating for safe, equitable access to organ donation and transplantation and actively seeks partnerships to advance this vital mission.
References/Resources
- WHO Framework for meaningful engagement: https://www.who.int/publications/i/item/9789240073074
- WHO Voice, agency, empowerment: https://www.who.int/publications/i/item/9789240027794
Social Media:
All TransplantEd socials are on our Linktree below. You may share these socials with my bio.
Logan Wong BSW, MSW RSW (He/Him)
Inclusion, Diversity, Equity, Accessibility and Anti-Racism (IDEAA) Professional,
Research Assistant, Health Policy Analyst
Logan identifies as a trans, bi-racial, Autistic wheelchair user and is a social worker &
equity, anti-racism, anti-oppression, & accessibility professional. He currently works at
McMaster University as a research assistant within the School of Rehabilitation
Sciences and is an entrepreneur and the owner of IDEAA Perspectives Training &
Consulting, a consulting firm specializing in Inclusion, Diversity, Equity, Accessibility and
Anti-Racism (IDEAA).
Resources
Logan’s website - http://www.ideaaperspectives.ca/
Socials:
Linkedin: https://www.linkedin.com/in/logan-wong-bsw-msw-rsw-37b353122/
Instagram: https://www.instagram.com/wolverine.on.wheels/ and https://www.instagram.com/ideaa_perspectives/
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