Month: February 2025

Why almost half of Clinical Trial results remain unpublished?

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A recent large-scale Cochrane review analyzing 165,135 clinical trials found that nearly half of all trial results never get published.

Key Findings:

  • 47% of trial results remain unpublished
  • Industry lags behind academia in publishing findings
  • Median time to publication: Over 2 years

I reviewed the results of clinical trials in which Kusum participated and discovered that their findings were also never published.

Years ago, I helped raise this issue in an article ‘The mystery of India’s missing clinical trial results’ published in BMJ, presenting evidence and data on the lack of transparency in clinical trial reporting in India . Yet, even years later, the situation remains unchanged not only in India, but globally.

Why Does This Matter?

Transparency in medical research is crucial—it fosters trust, enables learning, and supports further advancements in medicine. Withholding trial results limits scientific progress and can have consequences for patient care.  

During BMJ article time, I remember the words from Dr Aju Mathew, from the University of Kentucky Markey Cancer Center in the US, and director of Kerala Cancer Care in Kochi, Kerala “Such non-publication of results is both scientifically and ethically problematic.”

I still don’t understand why so many trial results remain unpublished. What prevents from sharing the data?

🔗 Read the full analysis here: https://www.transparimed.org/single-post/cochrane-review-47-of-all-clinical-trial-results-are-not-made-public

#MedicalEthics
#PublicationBias
#ClinicalTrials

Vivek

This time for Africa

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In West Africa, a region of 16 countries has only one PET scan machine. Forget about treatment—the struggle begins with basic diagnostic tests. Meanwhile, in another part of the world, India’s capital region, Delhi NCR, has around 20 PET scan machines, and in the US and EU, dedicated PET scans exist solely for animals. This stark contrast underscores the urgent need for equitable healthcare access..

After doing workshop for Lung Cancer Patient Advocacy in Asia (HongKong), it was privilege to do Patient Advocacy workshop in Africa along with global patient advocacy leaders at first-ever IASLC PAN Africa Lung Cancer Conference in Ghana.

Though resources in Africa are limited, the passion and determination are immense.

Recognizing Champions of Change

Huge appreciation for:

  • Caleb (Nigeria’s first lung cancer patient advocate, a friend, a change maker, and the one whose brainchild this conference is)
  • Jill Feldman (Founder of EGFR Resisters, 16-year lung cancer survivor, one of the most passionate lung cancer patient advocacy leader, and a dear friend)
  • Dr. Upal Basu Roy (Executive Director at LUNGevity, the largest lung cancer NGO, a great human being, and a bhai to me)

Their leadership and dedication made this conference and workshop truly impactful.

Moments That Moved Me

After my talk, three moments made me realize: Good Deeds Go Far!

  • Dr. Nini (Oncologist, Nigeria): “Your advocacy helped not just Indian patients but also Africans accessing ALK lung cancer care.”
  • A Ugandan medical student: “I’ve followed your work for years—it inspired me to enter & better serve patients.”
  • An African patient advocate: “If he can do it in India, why can’t we in Africa?”

A Call to Action

I remain committed to improving healthcare—not just for Indian cancer patients but for all of LMICs & global healthcare. I urge every stakeholder to join this mission.

Let’s continue to #SparkAChange and take this movement forward. And until we achieve this, remember what my Kusum used to say – Losing Is Not An Option!

#EveryLifeMatters
#NoOneShouldFightAlone
#PatientAdvocacy

Vivek

Thread of Hope

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Hope and Regret – final 10 hours of Kusum in this world!!
Hey Kusum, my love,

It’s been six years today since cancer took you away from me. I wrote this blog, “Hope and Regret – The Final 10 Hours of Kusum in This World,” just three months after you left. And now, six years later, nothing has changed what has written in this blog. I still feel you around me just as much as I did then, yet I still yearn to hear your voice, to hug you, to laugh with you.

And those regrets… they haven’t faded. They still weigh on me, torment me. I keep thinking—I should have done more, I should have said something different, I shouldn’t have let you go. Though, deep down, I don’t even know what else I could have done.

But one thing I have ensured—your legacy lives on. Your love, your hope, your courage, and your unwavering positivity continue to touch lives. For our families, for millions of cancer patients and their loved ones, I have tried to be a thread of hope and keep it strong.

And you, my love—you are still making a difference. Through your work in transforming healthcare and cancer research in India, through the lives you touched, the patients you helped, the courage you showed—you continue to inspire, not just in India but across the world.

I miss you with every breath I take… until we meet again❣️.

Yours,
Vivek