PAST EVENTS 2024
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:
Zahra Alidina
Zahra Alidina is an undergraduate student at McMaster University, studying Biology. She has experience working at SickKids as a research student. She has been involved as a patient partner for several years in various organizations including C4T (Canadian Collaborative for Childhood Cannabinoid Therapeutics), CIHR, and SKIP (Solutions for Kids in Pain). She is passionate about working through different barriers that patients and families experience and involving them in research.
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.
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.
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
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.
Fez Awan
My name is Fez Awan I am in my 30s. Born and raised in Lancashire UK to Pakistani parents. I was born with chronic kidney disease, and I have had 3 kidney transplants to date, one was a live donation from my father. And used all modalities of dialysis within my life time. I now have developed other long term conditions but chronic kidney disease (CKD) was my primary illness from birth.
Recommended Resources:
- PPI resources - Health Data Research UK (HDRUK)
- National Institute for Health and Care Research (NIHR)
- Kidney Research UK (kidney patient involvement)
Oluwafemi Ajayi
Oluwafemi Ajayi was born with sickle cell disease and she has lived through it miraculously for over 4 decades. She is a patient advocate for sickle cell and she also supports and empowers people like herself through her non-profit organization; ‘Gail Sickle Initiative. She is a PhD fellow at the University of South Africa, written and co-authored some articles and publications and an active member of different global organizations where advocacy and patient inclusion is priority. She looks forward to a world without pain.
Resources:
Socials:
Twitter/X: @SickleGail @ClickOluwa1129
Instagram: @gailsicklein @ClickOluwafemi
Facebook: 'Gail Sickle Initiative
Oluwafemi Ajayi
Linkedin: Oluwafemi Ajayi
Ella Balasa
Ella Balasa is a patient advocate, consultant, and a person living with cystic fibrosis - a rare genetic lung disease. She was diagnosed at 18 months old and has experienced countless hospitalizations since being a child. Because of her healthcare experiences, Ella has committed her time to empowering patients and advancing research and healthcare strategies through her connections with researchers, pharmaceutical companies, and patient organizations. Having a biology background, she advocates for the development of novel therapies for the treatment of antibiotic-resistant infections, which have significantly affected her life. She has spoken publicly about this issue as well as the value of the patient voice within research at healthcare conferences, at the FDA, on various podcasts, and congressional meetings.
Ella believes in the importance of engaging patients to be active participants in healthcare by empowering and educating them to collaborate with stakeholders to improve disease outcomes. She contributes to clinical trial development, various research committees, and in developing patient engagement initiatives.
Ella also has a passion for writing, distilling clinical information for patient communities, and sharing introspectively about her healthcare experiences and the hardships yet triumph that comes with living with a chronic illness. She has been published on numerous platforms including MedPage Today, HuffPost, BMJ, and in Pulmonary Therapy Journal. She has been recognized as a 2022 Health Union Social Health Award winner for Healthcare Collaborator and serves on patient committees with non-profits like the Cystic Fibrosis Foundation and the Everylife Foundation. Through opportunities working with healthcare organizations and sharing her journey through writing, she aims to affect the healthcare landscape to promote self-advocacy to patients and valuable insights to organizations. To view more of her work and experiences visit www.ellabalasa.com.
Links:
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.
Trishna Bharadia
Trishna Bharadia (The Spark Global), is a multi-award winning patient engagement consultant and health advocate. She lives with several long term conditions, including multiple sclerosis, which she was diagnosed with in 2008. Based in the UK, she works nationally and internationally with multiple stakeholders, including industry, academia, non-profits and charities, to better embed the patient voice into the healthcare ecosystem and medicines development lifecycle. She is a visiting lecturer in patient engagement at the Centre for Pharmaceutical Medicine Research at King's College London university and is a patron/ambassador for several health- and disability-related charities, including MS Society UK and ADD International. She has specific interests in good patient engagement practice, equity/diversity/inclusion in healthcare and research, and patient involvement in health information and scientific publications. Among her accolades, she is a Points of Light awardee from the UK Prime Minister's Office for her work with patient communities, and is both a PharmaVoice 100 honoree and honorary member of the Faculty of Pharmaceutical Medicine (Royal College of Physicians, UK) for her outstanding contribution to the life sciences. Fun fact: In 2015, Trishna's advocacy led her to being chosen to feature on a special four-part series of the UK version of "Dancing with the Stars."
Links:
Patient authorship of medical research publications: An evolution, revolution, and solution?
Socials
LinkedIn: https://www.linkedin.com/in/trishnabharadia/
Twitter/X: @TrishnaBharadia
Instagram: @TrishnaBharadia
Janelle Bowden
Janelle Bowden, PhD, is a scientist by training and has 20+ years of experience working in and around clinical trial operations in Australia and overseas, for sponsors, sites, and as a consultant. Janelle has a passion for greater consumer participation and involvement in research, and improving the trial participant’s experience. Janelle’s social enterprise, AccessCR, provides services to organisations involved in the research sector. This work funds our 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 - the Community and Consumer Research Workforce (CCReW).
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.
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.
Recommended Resources:
Sally Crowe
Sally retired from facilitating and project managing in the UK and international health and social care sector after 30 years. She worked with and for public, private and charitable organizations with a special interest in patient and public involvement in health and social care services and research prioritization. Now contributing to research from a public perspective as a user of healthcare services and as a part time carer. Sally is also a qualified Coach and likes to work with people involved in research in some way.
Three resources for Patient and Public Involvement;
- A guidebook for people wanting to prioritize research in a way that includes patients, carers and the public
- UK Public Involvement in Research Standards
- An interactive tool to explore the overarching priorities in health and social care from James Lind Alliance Priority Setting Partnerships (2016-2020)
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).
Jim Elliott
Jim Elliott led the work of the Health Research Authority on the involvement of patients and the public in health research [part time] from 2012 to 2023 as part of his work as an advocate for patients in research. Jim led the creation of a partnership of major research organisations with the aim of making patient and public involvement usual practice, leading to the Shared Commitment to Public Involvement in Health and Social Care Research, launched in March 2022. He retired from the HRA at the end of March 2024.
Jim has been a carer for close family with cancer and other health conditions for many years. His career has been spent in health research management across the commercial, public and voluntary sectors. His combined experiences drive his passion to help ensure that patients and the public can work in partnership with researchers to design, carry out and manage health research. Jim is currently involved as a public contributor in the work of Cancer Research UK, the Wales Cancer Research Centre, the All-Wales Cancer Community and in a number of research methodology projects related to the recruitment and retention of participants in clinical trials. His involvement in research also includes being a member of the patient advocacy charity Independent Cancer Patients’ Voice and of Health and Care Research Wales’ public involvement community.
Resources:
Socials:
Twitter/X: @drakesyard
Blog: www.drakesyard.co.uk
LinkedIn: Jim Eliott
Rebecca Esparza
Rebecca Esparza, MBA, is a two-time cancer survivor (ovarian and thyroid). She has travelled all over the world to represent cancer survivors at various cancer advocacy activities, speaking engagements, committees and forums. Her long term survivorship of ovarian cancer (20 years) has motivated her to speak up for the underserved and marginalized; especially those without access to healthcare and/or health insurance.
Resources:
National Coalition for Cancer Survivorship (NCCS), Ovarian Cancer Research Alliance (OCRA) and the Camden Coalition
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.
Recommended Resources:
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WHO Policy Brief – Culture Matters - https://iris.who.int/bitstream/handle/10665/344101/9789289052337-eng.pdf
Patrick Gee
Patrick Gee, Ph.D., is a Healthcare Consultant/Community Activist fighting against systemic issues such as poverty, social and racial injustices, criminal justice reform, health equity, and education reform. Patrick is the Founder and Chief Executive Hope Dealer at iAdvocate, a faith-based health and wellness organization that serves the undervalued, underserved, and disenfranchised communities of color.
Patrick graduated from American University, Washington, DC, with a Doctor of Philosophy in Justice, Law, & Criminology in 2012. Patrick is a patient advocate living with Diabetic Kidney Disease. He travels the country sharing his lived experience with medical providers, pharmaceutical companies, researchers, and patients to create access to a better quality of life, access to care, treatments, and solutions for those living with diabetes, kidney disease, heart disease, hypertension, and health equity challenges.
Patrick serves in several leadership roles, such as Chair of Kidney Health Initiative’s Patient Family Partnership Council, Patient Representative of the American Society of Nephrology’s Diabetic Kidney Disease-Collaborative Task Force; Chair of Quality Insights Network 5 Patient Family Advisory Committee; MedTech Color Collaborative’s Steering Committee and Disease State Awareness Subcommittee; and Patient Representative of World Health Organization’s Guideline Development Group for Living Guideline on Therapeutics and COVID-19, Drugs to prevent COVID and Clinical Management Workgroup, to name a few. Patrick received the ASN’s President’s Medal in 2022 for his advocacy work in the kidney community.
Patrick’s tagline: “I am the Voice of the Voiceless and the Face of the Faceless in the fight against kidney disease and health injustice.”
Resources:
David Gilbert
Director, InHealth Associates
David believes that people affected by life-changing illness are inherent leaders who bring jewels of wisdom, passion and insight from the caves of suffering. He is a mental health service user and author of The Patient Revolution - how we can heal the healthcare system. He was a pioneer of Patient (Lived Experience) Leadership and the first Patient Director in the UK NHS. He is also Writer in Residence at The Bethlem Gallery.
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.
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).
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.
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
Resources:
https://diversity-tapestry.com/tapestry/bc-support-unit-tapestry-project/#/nodes/1615?sidebar=info
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)
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.
Resources: https://www.thekids.org.au/be-involved/help-shape-our-research/
Rae Martens
Rae Martens is a disabled patient advocate from Calgary, Alberta, Canada. She has been a partner in research in a variety of contexts as parent of a disabled and medically complex child, as well as a two-time cancer survivor. When she is not partnering in research, she functions as a Knowledge Broker, building relationships between researchers and people with lived experience, ensuring the partnerships that develop are healthy ones.
Resources:
The Involvement Matrix: This is a tool for project leaders and experts by experience to engage in regular dialogue about their ideas, needs and expectations. The Involvement Matrix allows those involved to make clear agreements about the nature of involvement of experts by experiences in a project.
A series of co-developed knowledge tools that are applicable in a variety of research contexts on engaging patients and families: https://kidsbrainhealth.ca/training/training-career-development/family-engagement-in-research/fer-student-projects/
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 and 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.
Vina Mohabir
Vina Mohabir (she/her) has lived with chronic pain since she was a teenager after an accident in 2010 and recently beat stage 3 breast cancer. Vina is passionate about sharing her story and advocating for the unique needs of disabled, diverse and low-income youth. Patient engagement is one of her passions, and she works to facilitate patient engagement in pain research, policy, education, and clinical practice in Canada and internationally. She currently works at the iOUCH Pain Research lab at The Hospital for Sick Children in Toronto. Vina will be beginning her PhD at the University of Toronto, studying the implementation of a self-management app for Sickle Cell Disease under the supervision of Drs. Jennifer Stinson and Chitra Lalloo. She is proud to partner with organizations like Solution for Kids in Pain (SKIP), Health Canada, the Chronic Pain Network, the Canadian Pain Society, the International Association for the Study of Pain (IASP), and the Canadian Institutes of Health Research SPOR (Strategies for Patient-Oriented Research) units across Canada.
Christopher Munt
I have enjoyed a career that stretches all the way back to 1985. I have been privileged to look back on roles in Social Work, academic teaching and research, project leadership roles in NHS transformation programmes, community development, and supporting service user led organisations. A standout engagement has been working for the WHO in the Middle East, assisting colleagues to move towards more community based therapeutic provision in mental health. I was awarded the MBE in 2011, for services to Mental Health. At the same time, I look forward to new opportunities to bring closer together the wisdoms of professional and lived experience. I believe that the profession of Social Work, has regard for lived experience embedded in its values of Advocacy, Social Justice, and Unconditional High Regard.
Running parallel to my career has been the presence of a serious fluctuating mental illness, which has at times has necessitated my engaging with community and inpatient services. This has crystallised for me the real-world impact of services, good, poor, and indifferent on vulnerable and distressed lives. I utilise these experiences as a tool and not a weapon. My truth and the experiences of my peers, guides my approach to working with professionals in a constructively challenging manner, but free of any animosity or hostility.
Resources
https://intppinetwork.wixsite.com/ippin/post/creating-a-safe-space-for-the-public-voice
Shyamsundar Muthuramalingam
Dr. Shyamsundar Muthuramalingam, with a Ph.D. in Chemistry and personal experience as a kidney transplant recipient, is a leading advocate for patient engagement in health and medical research in Australia. His journey through kidney disease and haemodialysis has fuelled his passion for consumer advocacy and community engagement. Dr. Muthuramalingam has significantly shaped engagement strategies across key organizations like ANZDATA, SAHMRI, The George Institute for Global Health, and Kidney Health Australia. He's instrumental in promoting consumer voices in research agendas, study implementation, and translating findings to improve care. As a Steering Committee member at the PxP Conference, he will share insights on enhancing patient partnership in research, emphasizing the impact of lived experience in clinical trials. His work exemplifies the 'For Patients, By Patients' ethos, making him a pivotal figure in advancing patient-centred research.
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.
Resources:
- 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
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.
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.
Derek Stewart
Born too many years ago in Ayr, Scotland, Derek was treated successfully for throat cancer in 1995. A former teacher, Derek worked with young people experiencing difficulties in adjusting to mainstream education in Glasgow then in Nottinghamshire where he now lives. He subsequently became actively involved in numerous aspects of patient involvement and advocacy at a local, national and international level being the founder Chair of the Consumer Liaison Group for the National Cancer Research Institute, UK. He was Chair of a Primary Care Trust and of Nottingham Crime & Drugs Partnership which led to the award of OBE in 2006. Derek now has a particular interest with health and care methodology research in making all studies as relevant, efficient and effective as possible.
In 2020 Derek was appointed Honorary Professor at National University of Ireland, Galway. He is a Strategic Advisor for the Health Research Board – Trials Methodology Research Network, Ireland (HRB-TMRN).
Recently Derek has been co-chairing the UK Health Research Authority (HRA) #MakeItPublic Campaign Group on Research Transparency. He is also a Non-Exec Director for the ISRCTN Registry and a Member of Cancer Research UK (CRUK).
Socials
X (formerly Twitter): @DerekCStewart
Resources
What do we mean by Research Active?
A history of Public Involvement in UK – a witness seminar
Kimberly Strain
Kimberly Strain lives in British Columbia, Canada, and has been a patient partner in a variety of initiatives since 2012 including committees, a patient research partner, a member of Patient Voices Network, and a co-author of the Patients Included charters. She also is on the Board of Directors for the Institute for Safe Medication Practices Canada and recently was co-chair for the Solutions for Kids in Pain (SKIP) Patient and Caregiver Advisory Committee. In her spare time, Kimberly has a passion for photography and the arts.
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
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.
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.
Recommended Resources:
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?
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.
Linda Wilhelm
Linda Wilhelm is the President of The Canadian Arthritis Patient Alliance, a national, volunteer, patient driven organization that has worked to improve the lives of people living with arthritis since 2002. She is co-chair of the Steering Committee for the Chronic Pain Strategy for Patient Oriented Research (SPOR) Network, as well as a member of the networks patient advisory committee. She is also a member of The Evidence Alliance (SPOR) Network. Linda has participated in past Health Canada expert advisory panels and numerous conferences concerning access and drug safety issues. She is a former member of both the Expert Advisory Committee for Vigilance of Health Products and the Drug Safety and Effectiveness Network’s steering committee. Ms. Wilhelm has been an active advocate for treatment access and quality of care for all patients both regionally and nationally for over twenty years and is a past board chair for the New Brunswick Division of the Arthritis Society. Ms. Wilhelm has been living with Rheumatoid Arthritis for over thirty five years. Ms. Wilhelm is a recipient of the Queen’s Jubilee Golden and Diamond Medal and the 2015 Arthritis Alliance of Canada Qualman/Davies Patient and Consumer Leadership Award.
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