Returning to Uddanam after almost three years was a long-overdue and highly anticipated visit for me as the Principal Investigator of the STOP-CKDu study.
Impressive and I'm so happy to see the positivity and progress on this issue.
My name is Dr. Aditya and I'm currently a trainee in Endocrinology, will be going to Cambridge shortly and metabolic disorders, particularly Diabetes and Obesity are close to my heart.
During my postgraduate training in India, at Kamineni Institute of Medical Sciences (KIMS), Narketpally, Nalgonda, we saw a similar pattern of CKDu. Young gentlemen and women suffering with CKD on MHD, losing so much of precious human capital. We did implement an idea called PaJR (patient journey records) groups on Whatsapp - the idea is to create a WhatsApp group where the patient, a patient advocate and a team of caregivers are members and patients share their problems live and receive solutions on the fly - this happened to also improve patient accountability and ownership and improved patient education as well. This also helped do away with a paternalistic approach to healthcare that is prevalent in India. Please see our paper on PaJR groups here - https://doi.org/10.1111/jep.13886
Would you consider something similar to this would help in accelerated data accrual at a much faster rate? Perhaps getting into patient's lives (at their own behest and with consent) and generating a million data points can show us a pattern? Of course the iconic George Institute surely would have something in place but I believe it is an idea worth considering.
I sincerely wish your team can make a breakthrough and stop the immense loss of human capital.
Thank you for your comment and for sharing your observations. Just so you know, one of our researchers is taking an ethnographic approach - observing and interacting with people in their natural environment to understand how those users see the world and interact with everything around them. We have also set up a Counselling Centre to help patients navigate the complex care pathway and point them in the right direction. This needs to be a collaborative effort - we are looking (and finding) colleagues interested in the same goals.
You would be happy to know that one of your students from PGI, Dr. Rakesh Biswas heads the project at Department of General Medicine at KIMS, Narketpally. I have kept him posted on this and I'm sure he will be happy to reach out to you.
Impressive and I'm so happy to see the positivity and progress on this issue.
My name is Dr. Aditya and I'm currently a trainee in Endocrinology, will be going to Cambridge shortly and metabolic disorders, particularly Diabetes and Obesity are close to my heart.
During my postgraduate training in India, at Kamineni Institute of Medical Sciences (KIMS), Narketpally, Nalgonda, we saw a similar pattern of CKDu. Young gentlemen and women suffering with CKD on MHD, losing so much of precious human capital. We did implement an idea called PaJR (patient journey records) groups on Whatsapp - the idea is to create a WhatsApp group where the patient, a patient advocate and a team of caregivers are members and patients share their problems live and receive solutions on the fly - this happened to also improve patient accountability and ownership and improved patient education as well. This also helped do away with a paternalistic approach to healthcare that is prevalent in India. Please see our paper on PaJR groups here - https://doi.org/10.1111/jep.13886
Would you consider something similar to this would help in accelerated data accrual at a much faster rate? Perhaps getting into patient's lives (at their own behest and with consent) and generating a million data points can show us a pattern? Of course the iconic George Institute surely would have something in place but I believe it is an idea worth considering.
I sincerely wish your team can make a breakthrough and stop the immense loss of human capital.
Thanks a lot.
Aditya
Thank you for your comment and for sharing your observations. Just so you know, one of our researchers is taking an ethnographic approach - observing and interacting with people in their natural environment to understand how those users see the world and interact with everything around them. We have also set up a Counselling Centre to help patients navigate the complex care pathway and point them in the right direction. This needs to be a collaborative effort - we are looking (and finding) colleagues interested in the same goals.
Thanks for the response sir.
You would be happy to know that one of your students from PGI, Dr. Rakesh Biswas heads the project at Department of General Medicine at KIMS, Narketpally. I have kept him posted on this and I'm sure he will be happy to reach out to you.