The Covid 19 pandemic has brought-forth unprecedented issues including encouraging drugs prescribed without enough data, detractions of publications. All suggested the lack of education, awareness and best practices on Ethics in Research…….Therefore, a Not for Profit organization “Sangath Bhopal hub” came up with a unique digital course “DRISHTi” to strengthen the Health Research Ethics in the Indian setting…….I am pleased to be part of 40 leading experts and educators who has helped develop this 10 week certification program, which will also make one eligible to become ethics committee member.

As a patient advocate, I ensured to have voice, experience and expectations of patients be included and shared during this course.

Hope it will help to create better awareness and implement best practices of Ethics in Research in India for better, quality research benefits to the patients

As like most of my weekends, my last weekend also went into the service of cancer patients. But this was bit more special for me for few reasons:

1) I was invited as a speaker at “11th National Conference for Teenage and Young Adult Cancers” in the city of “Indore” in the state of Madhya Pradesh (an overnight journey from my place by train). When I saw, there were so many young kids as cancer patients, I was heartbroken….However, the spirit and zest for life in those kids were just amazing and a spiritual lift for me. That reminds us to do anything we can for better healthcare, for our generations to come.

2) There was a music band of young people who had defeated cancer and are now cancer free. After the conference, one of the guitarists came to meet me with his family. He and his family shared that when he was first diagnosed with Cancer, they found my late wife Kusum and my story and work of fighting with cancer on the internet, which gave them hope and motivation at the time of need. The young boy is cancer free and pursuing his career in music (the one with the beard and music instrument bag in the attached photo). The happiness of that family is the biggest reward for my work.

3) I also got the opportunity to meet Ravi Prakash. Ravi ji is renowned BBC Hindi reporter of India, and was 44 years old when he got diagnosed with Stage 4 EGFR lung cancer. While still learning about EGFR and lung cancer, he has started patient advocacy in India at amazing level and was successful to get 1 million INR per year financial assistance from the Jharkhand government to cancer patients. Thanks to Prabhat ji (who is in pharma industry with profession but one of the most passionate patient advocate by heart) for connecting me with Ravi ji.

3) Last but not least, this was the city where I had my first date with Kusum 15 years back, when she had finally accepted my proposal after my months of efforts (lucky me). There, I missed you a lot Kusum, alot.

#Cancer #PatientAdvocacy #Humanity #Hope #Love #RiseToSurviveCancer #LosingIsNotAnOption

In whatever profession we are, we need to remember that no one (be it a Doctor or Policy maker or Politician or Rich or Poor) is immune to disease/ illness. We will be a patient or caregiver for one disease or other, in our lifetime. We can’t see current patients community as a 2nd party or not our community.

When today we have strength or resources or time, we should invest to make things better for their today because that will make our future better, when we will become a patient or caregiver.

I am back at home, after a successful World Lung Cancer Conference in Vienna, with a number of workshops, learning, new partnerships, and meetings.

It was an honour and a huge responsibility to properly represent lung cancer patients from LMICs like India and to create new partnerships with patient advocates & groups from South Africa, Nigeria, US, UK, EU, Iran, etc., and as well as global oncogene focused patient support groups for ALK, EGFR, KRAS & ROS1.

Further, it was indeed great to have the opportunity to be able to raise concern on disparities in lung cancer treatment.

There was a lot of data presented on research as well as in areas like Air Pollution, which is now officially no. 2 cause of Lung cancer after tobacco; Significant increase of lung cancer cases in females…which will help in advocacy efforts to remove the stigma of lung cancer that it is not only a smoker’s disease….”Anyone with lungs can have lung cancer“.
#RemoveStigma
#LCSM
#WCLC22
#AirPollution
#LosingIsNotAnOption
#RiseToSurviveCancer

This week, one of my patient advocacy highlights was to be part of an esteemed panel on an extremely important topic on “Impact of Patient Advocacy in Modern Healthcare Delivery Mechanisms” at the IHW Council event of ‘Patient First Summit & Awards 2022‘.

It was a great discussion to share with established and budding patient support groups & advocates who have attended this event on – how patient advocacy has potential to move mountains, how it is already changing the face of India healthcare system for better and why we need more patient advocacy in India. And top of that, awarding those amazing patient advocates/ advocacy groups, who are selflessly serving patients in India.

#NotjingAboutUsWithoutUs #PatientAdvocacy #PatientsVoice
Vivek

I am honored to contribute along with world leading experts on this extremely important 𝐩𝐚𝐩𝐞𝐫 on 𝐂𝐚𝐧𝐜𝐞𝐫 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 in 𝐋𝐌𝐈𝐂𝐬 which got published in one the world’s top journal “𝐍𝐚𝐭𝐮𝐫𝐞 𝐌𝐞𝐝𝐢𝐜𝐢𝐧𝐞 (impact factor: 53.44)”. I have co-authored this paper along with:
– Tata Memorial Centre, Homi Bhabha National Institute, India,
– The Chief Scientist of WHO
– and Scientists and leading experts from:
> National Cancer Institute (NCI), USA
> University of Oxford, England
> University of Harvard, USA
> King’s College London,
> Queen’s University, Canada
> University of Toronto,
> University of North Carolina, USA
> National Cancer Institute of Sri Lanka.
> and scientists, researchers and oncologists from Turkey, Nepal, Kenya, Uganda, Malaysia, Ghana and France

This perspective paper is expected to be the 𝐠𝐮𝐢𝐝𝐢𝐧𝐠 𝐝𝐨𝐜𝐮𝐦𝐞𝐧𝐭 in 𝐩𝐨𝐥𝐢𝐜𝐲 𝐦𝐚𝐤𝐢𝐧𝐠 as path forward for Cancer Research globally, including with LMICs.

I, being the only patient advocate across the globe, as part of this initiative – it was great opportunity to work with best of minds and world leading experts for better future of our patients and cancer research, globally.

Snapshot of the article is attached and link of the full article is as https://www.nature.com/articles/s41591-022-01738-x  . Hope you connect with this article and be part of this initiative so no one (including in LMICs) left alone and everyone has access and benefits of Cancer research.

#ResearchSavesLives #LMIC #PatientAdvocacy #CancerResearch #PolicyMaking #LosingIsNotAnOption #RiseToSurviveCancer #PatientsVoiceMatters #NothingAboutUsWithoutUs

It was an honor and great opportunity to join the annual conference of Indian Society for Clinical Research (ISCR) as ‘𝐬𝐩𝐞𝐚𝐤𝐞𝐫’ along with my fellow esteemed panelists including Mr. Anirban Roy Chowdhury (VP, Bharat Serums and Vaccines), Dr. Kamala (President, Health Collaborations LLC) , Ms. Alpana (Founder, CureSMA Foundation of India), Ms. Ranjeet Kaur (President, Breast Cancer Welfare Association), Dr Seema Pai (Director, Pfizer Operations) and Dr Viraj Suvarna (VP, Biocon).

A conference attended by approx 5000 clinical researchers, hence a great opportunity to make them understand about 1) Patients’ perspective on Clinical Research and Clinical Trials; 2) From a side of protocols, subjects, studies to the side of Patients, Caregivers, Loved ones, fighting with life threatening diseases; 3) How patient advocates can help better outcome in clinical research and 4) a inspiring video and message from Kusum on how clinical trials access to research is answer to India’s healthcare problem.

It was heartwarming to hear the stories & work of fellow panelists in this exceptional insightful discussion. Leaders of pharma Industry/ ISCR promised to work on the points raised by us for better access to research & clinical trials for Indian patients and for betterment of patient care & experience during clinical trials. I will keep following up on these raised actions, until they implemented, as my Kusum used to say, Losing is Not An Option

#ResearchSavesLives

#PatientCentricity

#PatientsFirst

It was my honor to be invited as 𝐬𝐩𝐞𝐚𝐤𝐞𝐫 at one of the most esteemed international conference “Evidence Based Medicine 2022” in field of Oncology at Tata Memorial Centre, Mumbai, and represent Lung Cancer Patients Community while speaking on such an important topic “Partnering for betterment – Patient Advocacy in Lung Cancer”.

Discussions on ‘care’ are incomplete without the patient’s voice and I will continue to do my best for better healthcare system, for patients, for us and for generations to come, for Hope to Reality.

Vivek
#PatientsFirst  #PatientsVoiceMatters #RiseToSurviveCancer  #LosingIsNotAnOption

Great to collaborate with Rare Cancers Australia Ltd (RCA) a renowned charity group and join them as guest faculty along with other amazing faculty & remarkable leaders & organisations on Patient Advoacy as part of ‘Pinnacle workshop’ for global patient support organisations with case study on ‘The opportunities and challenges of navigating the health system in India”.

Despite the challenges, the faculty/ three fellow patient organisations shared their stories of how they were able to work with the government and push for better outcomes for our patients.

To hear the inspirational stories of Hemophilia Federation (India) and Organization for Rare Diseases India, along with ours (Vivek Tomar (Rise to Survive Cancer)) visit: https://lnkd.in/gNYfzVqP

#RiseToSurviveCancer 
#LosingIsNotAnOption 
#PatientsVoiceMatters 
#PatientsFirst 
#PatientAdvocacy