For decades, Indian patients have carried a deep mistrust of research. Many still equate participation with becoming a “guinea pig”. This narrative has persisted because no single system, government, industry or healthcare, took ownership of changing it.
A group of clinicians, researchers, patient leaders and advocacy organisations is now attempting to shift that narrative. They call themselves PACER, which is Patient Advocates for Clinical Research, a collective built to bring transparency, trust and patient partnership into Indian clinical research.
PACER did not start as an individual project. It emerged from shared experiences across clinicians and patient groups who repeatedly saw the same problem: patients were excluded from conversations about research. The initiative is led by Chairperson Poonam Bagai, whose involvement reflects the program's focus on patient representation.
MedBound Times connected with Dr. Pooja Sharma, MBBS, MD Obstetrics and Gynecology, the Project Lead for PACER and CEO of Apar Health. She recalls how long it took to bring people together.
“For nearly a decade we tried to bring government, industry, NGOs and stakeholders to the same table. Nobody would take responsibility,” says Dr. Pooja.
But the collective eventually formed because, as Team PACER puts it, “रिसर्च में भागीदारी, स्वस्थ भारत की ज़िम्मेदारी”
Today, the PACER network includes 35 plus patient advocacy groups across multiple disease areas.
PACER’s mission is grounded in practical realities.
“If you have to bring high-end technology from the US, it will be very expensive. If you do not do it in India, it will never be affordable,” says Dr. Pooja Sharma.
But research only grows when the public demands it. They must understand that it is also a clinical care option.
PACER believes in making patients aware about the options in clinical research:
“Healthcare responds when people ask for change. When families demanded bypass surgeries in India, the system made it happen. Research needs the same public awareness.”
PACER’s trainings highlight a major insight.
Doctors and patients speak very different languages.
Patients feel hesitant to ask questions. Clinicians often underestimate patient understanding.
“During research discussions, patients may feel dismissed for asking informed questions,” says Dr. Pooja.
Members of the initiative point out, “Informed consent must be more than a signature. It must be understood.”
Their workshops teach patients basic research vocabulary and train clinicians to communicate with empathy.
The Clinical Trials Registry of India is the official public database for all human clinical studies in the country.
Researchers must register their trials before they recruit any participants.
Registration increases transparency and helps ensure ethical oversight.
Each entry includes the study’s purpose, design, investigators, locations, and approvals.
Launched in 2007 and made mandatory in 2009, it keeps clinical research open to public scrutiny.
Patients, caregivers, and healthcare workers can use it to understand ongoing trials and make informed decisions.
For many families, exploitation happens because they don’t know where to find legitimate, ethical research trials.
A major PACER effort is raising awareness about the Clinical Trials Registry of India, or CTRI.
Most families do not know that CTRI exists, and this lack of awareness leaves them vulnerable.
“People do not even know about CTRI. They do not know where to verify ethical research,” says Dr. Pooja.
She remembers phone calls during her time at Medanta.
“Every day someone called asking for stem cell therapy. They were being quoted lakhs of rupees. I told them, if it is research, nobody can charge you. Check for the correct information on the CTRI website .”
A major PACER project focuses on mapping patient-centered research priorities.
In oral cancer, doctors may track five-year survival rates.
However, patients ask very different questions:
“Will I be able to swallow? Will I be able to eat normally? These are daily life concerns that research may ignore,” says Team PACER.
The collective wants such patient priorities to guide research design, funding and outcomes.
PACER wants to rebuild trust without antagonism.
“We do not want to be an activist voice. We want to be an advocate voice,” says Dr. Pooja.
PACER’s guiding belief is clear,
“We want to do research with people, not on people."
Patient advocacy refers to helping individuals understand their diagnosis, treatment options, rights, and risks, while ensuring they feel supported and heard throughout their care journey.
Advocacy helps patient's understand diagnoses, treatment choices, and risks in simple terms.
It also provides emotional support and ensures patients feel heard during stressful decisions.
Advocates bridge the power gap between patients and doctors and make consent truly informed.
Nurses, counsellors, trained family members, and support workers can all serve as advocates.
Effective advocacy continues throughout care and adjusts to the patient’s changing needs.
The collective summarises its mission in three points.
Create expert patients who participate confidently in research.
Enable patient-led research where topics reflect real patient needs.
Train doctors and researchers to listen deeply and design empathetic systems.
As outlined in PACER’s core principles – promote, support, and conduct patient-centric research.
“रिसर्च में भागीदारी, स्वस्थ भारत की ज़िम्मेदारी”
With global patient-voice movements expanding in Europe, Canada and the United States, India is ready too.
“There is an idea that dies if it is born too early. But this idea, the world is ready for it now,” reflects Dr. Pooja Sharma.
PACER hopes to be India’s contribution to this shift, turning patients from subjects into true co-researchers.
References:
1. Central Drugs Standard Control Organization. Clinical Trials Registry - India (CTRI). Accessed November 27, 2025. https://ctri.nic.in/Clinicaltrials/login.php.
2. “Patient Advocates for Clinical Research (PACER): A Step Toward Ethical, Relevant, and Truly Participatory Clinical Research in India.” Cureus 16, no. 4 (2024): e58454. https://pubmed.ncbi.nlm.nih.gov/38765448/
3. Bagai, P., Sharma, P., Ansari, A., Singh, N., Sharma, S., Singh, P., Chougule, D., Manish K. Singh, G. Singh & Singh, S. “Emphasizing Patient-Centricity Through a Tailored Training Program to Empower Patients, Advocates, and Ethics Committees in Good Clinical Practice.” Cureus 16, no. 7 (2024): e64042. https://pubmed.ncbi.nlm.nih.gov/39114212/
3. Bagai, P., P. Sharma, A. Ansari, N. Singh, S. Sharma, P. Singh, D. Chougule, M. K. Singh, G. Singh & S. Singh. “Perspective of Patient Advocacy Groups on Clinical Research and Outcomes of Their Involvement.” Journal of Clinical Preventive and Cardiology 13 (2024): 54–62. https://journals.lww.com/jcpc/fulltext/2024/13030/perspective_of_patient_advocacy_groups_on_clinical.2.aspx
Edited by M Subha Maheswari