The Patient Advocates for Clinical Research Education and Regulatory Framework-India (PACER) initiative, launched by CanKids…KidsCan in 2023, represents a transformative step in bridging gaps between patients, advocates, and the clinical research ecosystem. Funded by Pfizer Pvt. Ltd., this ambitious program seeks to raise awareness about clinical research, empower Patient Advocacy Groups (PAGs), and enhance healthcare outcomes through ethical and patient-centered advocacy.
The Vision Behind PACER
PACER was conceptualized to address the growing need for ethical, informed, and inclusive participation in clinical research. India, despite being a global hub for medical advancements, sees low participation in clinical trials due to lack of awareness, misconceptions, and inadequate patient advocacy. PACER aims to:
Educate PAGs, patient advocates, and caregivers about the significance of clinical research.
Empower participants with the tools to contribute to ethical and regulatory frameworks.
Engage healthcare stakeholders to create a unified, informed approach to patient-centric clinical research.
A Two-Tiered Capacity-Building Approach
PACER employs a comprehensive two-tiered model to ensure impactful learning:
Tier 1 – Research Orientation: Self-paced online modules developed by APAR Health to provide foundational knowledge about clinical research, ethics, and patient advocacy.
Tier 2 – Quarterly Workshops: Interactive sessions conducted at renowned institutions like Medanta - The Medicity and Amrita Institute of Medical Sciences, focusing on specific themes such as Good Clinical Practice (GCP), research ethics, and patient advocacy.
Achievements in PACER’s Inaugural Year
PACER’s first year has been marked by remarkable accomplishments, demonstrating its potential to revolutionize clinical research education in India:
Workshops and Events:
Workshop 1 (March 2023, Medanta - The Medicity): Focused on raising awareness about clinical research and its importance in advancing medical knowledge.
Workshop 2 (June 2023, Amrita Institute of Medical Sciences): Explored GCP and research ethics, emphasizing the role of PAGs in maintaining ethical standards and patient safety.
Workshop 3 (November 2023, PHOSSCON, Chennai): Highlighted the journey from patient navigator to advocate, focusing on evidence-based advocacy and healthcare outcomes.
International Clinical Trials Day (ICTD) celebrations engaged diverse stakeholders and enhanced the visibility of clinical trials.
Outreach and Collaboration:
Over 200 patient advocates from 50+ organizations across India participated, representing diseases like pediatric cancer, diabetes, myeloma, and rare diseases.
Collaborations with ethics committees, healthcare institutions, and research organizations have paved the way for ethical and inclusive research practices.
Research and Publications:
PACER published three research articles addressing the role of PAGs in clinical research and ethical advocacy.
The program’s poster won Best Poster at FERCICON 2023 and was presented at ISCR 2024 under the "Patient as Research Partners" theme.
Enhanced Awareness and Education:
Pre- and post-evaluation studies from workshops revealed significant improvement in participants' understanding of clinical research, informed consent, and GCP guidelines.
Insights from PACER Workshops
The PACER workshops offered a blend of expert-led sessions, interactive discussions, and real-world case studies. Some key highlights include:
Awareness and Advocacy:
Participants learned about the importance of informed consent, patient rights, and ethical practices in clinical trials.
Sessions emphasized the role of PAGs in translating complex medical information into accessible language for patients and families.
Ethics and Good Practices:
Experts like Dr. Naresh Trehan and Dr. Pooja Sharma shed light on ethical considerations, the role of ethics committees, and the significance of patient-centric research.
Real-World Case Studies:
Personal experiences shared by cancer survivors and patient advocates underscored the transformative impact of clinical trials on individual lives.
Interactive Discussions:
Focused Group Discussions (FGDs) allowed participants to voice concerns, ask questions, and collaborate on solutions to common challenges in clinical research.
Bridging Barriers: Addressing Challenges in Clinical Research
PACER has identified and addressed key barriers to clinical trial participation in India:
Misconceptions and Fears: Many patients view clinical trials as risky, fearing they might be treated as “guinea pigs.” PACER’s workshops focused on demystifying clinical research through patient education and advocacy.
Lack of Awareness: Limited understanding of clinical trial processes and benefits has been a significant obstacle. PACER’s educational modules and interactive sessions tackled this gap effectively.
Access and Representation: By including patient advocates in ethics committees and decision-making processes, PACER ensures diverse representation and equitable healthcare outcomes.
Stories of Transformation
PACER’s impact is best illustrated through its participants:
A childhood cancer survivor shared her experience of participating in a clinical trial, highlighting how it saved her life and inspired her to become a patient advocate.
A caregiver of a diabetes patient expressed newfound confidence in navigating clinical trials after attending a PACER workshop.
PAGs like Myeloma Friends and Diabetes Fighters Trust have started creating concept notes and engaging in ethics committees to drive patient-centric research.
Looking Ahead: PACER’s Vision for the Future
As PACER moves into its second year, it is poised for greater impact:
Expansion: Plans to engage more organizations, especially in underserved regions, to widen its reach.
Advanced Training: Development of modules on advanced research methods, ethics, and regulatory frameworks.
Awareness Campaigns: Leveraging social media and digital platforms to amplify the message of ethical and inclusive clinical research.
Strengthening Collaborations: Deepening partnerships with healthcare institutions, research bodies, and ethics committees to embed patient advocacy at every level.
PACER is not just an initiative; it is a movement to transform clinical research in India. By empowering patients, caregivers, and advocates, CanKids is fostering a culture of informed, ethical, and patient-centered research. Together, we can ensure that every patient’s voice is heard and that clinical research becomes a pillar of equitable healthcare.
Let’s champion PACER’s mission and illuminate the path to a future where patients are not just participants but partners in clinical research.
Join us in this journey of transformation and advocacy. Together, we can make a difference!
The Vision Behind PACER
PACER was conceptualized to address the growing need for ethical, informed, and inclusive participation in clinical research. India, despite being a global hub for medical advancements, sees low participation in clinical trials due to lack of awareness, misconceptions, and inadequate patient advocacy. PACER aims to:
Educate PAGs, patient advocates, and caregivers about the significance of clinical research.
Empower participants with the tools to contribute to ethical and regulatory frameworks.
Engage healthcare stakeholders to create a unified, informed approach to patient-centric clinical research.
A Two-Tiered Capacity-Building Approach
PACER employs a comprehensive two-tiered model to ensure impactful learning:
Tier 1 – Research Orientation: Self-paced online modules developed by APAR Health to provide foundational knowledge about clinical research, ethics, and patient advocacy.
Tier 2 – Quarterly Workshops: Interactive sessions conducted at renowned institutions like Medanta - The Medicity and Amrita Institute of Medical Sciences, focusing on specific themes such as Good Clinical Practice (GCP), research ethics, and patient advocacy.
Achievements in PACER’s Inaugural Year
PACER’s first year has been marked by remarkable accomplishments, demonstrating its potential to revolutionize clinical research education in India:
Workshops and Events:
Workshop 1 (March 2023, Medanta - The Medicity): Focused on raising awareness about clinical research and its importance in advancing medical knowledge.
Workshop 2 (June 2023, Amrita Institute of Medical Sciences): Explored GCP and research ethics, emphasizing the role of PAGs in maintaining ethical standards and patient safety.
Workshop 3 (November 2023, PHOSSCON, Chennai): Highlighted the journey from patient navigator to advocate, focusing on evidence-based advocacy and healthcare outcomes.
International Clinical Trials Day (ICTD) celebrations engaged diverse stakeholders and enhanced the visibility of clinical trials.
Outreach and Collaboration:
Over 200 patient advocates from 50+ organizations across India participated, representing diseases like pediatric cancer, diabetes, myeloma, and rare diseases.
Collaborations with ethics committees, healthcare institutions, and research organizations have paved the way for ethical and inclusive research practices.
Research and Publications:
PACER published three research articles addressing the role of PAGs in clinical research and ethical advocacy.
The program’s poster won Best Poster at FERCICON 2023 and was presented at ISCR 2024 under the "Patient as Research Partners" theme.
Enhanced Awareness and Education:
Pre- and post-evaluation studies from workshops revealed significant improvement in participants' understanding of clinical research, informed consent, and GCP guidelines.
Insights from PACER Workshops
The PACER workshops offered a blend of expert-led sessions, interactive discussions, and real-world case studies. Some key highlights include:
Awareness and Advocacy:
Participants learned about the importance of informed consent, patient rights, and ethical practices in clinical trials.
Sessions emphasized the role of PAGs in translating complex medical information into accessible language for patients and families.
Ethics and Good Practices:
Experts like Dr. Naresh Trehan and Dr. Pooja Sharma shed light on ethical considerations, the role of ethics committees, and the significance of patient-centric research.
Real-World Case Studies:
Personal experiences shared by cancer survivors and patient advocates underscored the transformative impact of clinical trials on individual lives.
Interactive Discussions:
Focused Group Discussions (FGDs) allowed participants to voice concerns, ask questions, and collaborate on solutions to common challenges in clinical research.
Bridging Barriers: Addressing Challenges in Clinical Research
PACER has identified and addressed key barriers to clinical trial participation in India:
Misconceptions and Fears: Many patients view clinical trials as risky, fearing they might be treated as “guinea pigs.” PACER’s workshops focused on demystifying clinical research through patient education and advocacy.
Lack of Awareness: Limited understanding of clinical trial processes and benefits has been a significant obstacle. PACER’s educational modules and interactive sessions tackled this gap effectively.
Access and Representation: By including patient advocates in ethics committees and decision-making processes, PACER ensures diverse representation and equitable healthcare outcomes.
Stories of Transformation
PACER’s impact is best illustrated through its participants:
A childhood cancer survivor shared her experience of participating in a clinical trial, highlighting how it saved her life and inspired her to become a patient advocate.
A caregiver of a diabetes patient expressed newfound confidence in navigating clinical trials after attending a PACER workshop.
PAGs like Myeloma Friends and Diabetes Fighters Trust have started creating concept notes and engaging in ethics committees to drive patient-centric research.
Looking Ahead: PACER’s Vision for the Future
As PACER moves into its second year, it is poised for greater impact:
Expansion: Plans to engage more organizations, especially in underserved regions, to widen its reach.
Advanced Training: Development of modules on advanced research methods, ethics, and regulatory frameworks.
Awareness Campaigns: Leveraging social media and digital platforms to amplify the message of ethical and inclusive clinical research.
Strengthening Collaborations: Deepening partnerships with healthcare institutions, research bodies, and ethics committees to embed patient advocacy at every level.
PACER is not just an initiative; it is a movement to transform clinical research in India. By empowering patients, caregivers, and advocates, CanKids is fostering a culture of informed, ethical, and patient-centered research. Together, we can ensure that every patient’s voice is heard and that clinical research becomes a pillar of equitable healthcare.
Let’s champion PACER’s mission and illuminate the path to a future where patients are not just participants but partners in clinical research.
Join us in this journey of transformation and advocacy. Together, we can make a difference!
Note: The patient support we provide for drugs/ diagnostics/ therapies / medical equipment and other holistic care to children with cancer across 141 hospitals we partner including ones where the research projects are being conducted , enables access to care , prevents abandonment and that families are able to participate in research.