This is discussion about Educating Tuberculosis patients for excellent results.
I watched the video on your site - I am so glad this competition has brought this work forward for people like me to see. I am humbled by your efforts.
I wanted to ask you about the relationships that physicians and patients have in India - what is the dynamic in terms of patients asking questions of their doctor?
I am specifically looking at the grid that the Ashoka experts created - is there something about the way relationships between patients and physicians exist in India that cause barriers in patient's self-motivation to understand treatment and adhere?
Thanks for your thoughts and for your experience,
Thank you for your insightful comments. With so much work at every stage, from fundraising to actual work at grassroot level, I have been late in replying, and please do forgive.
In India, we deal with an entire spectrum of patients. On one hand, we have the educated, well-heeled crowd, who have access to the best health infrastructure and information, and who, by virtue of their position or connections, are not intimidated at all by the doctors.They are confident in discussing their disease with doctors. The other end of the spectrum is those who fit in the category of absolute poverty ( earning less than a dollar a day, as defined by the World bank), and these people have no knowledge, no access, no information even regarding the public health infrastructure which is for free. They are niether aware of their rights as patients, nor the duties and responsiblities of health providers.They do not know where to go and whom to approach when they fall sick. One of the biggest barriers to accessing health care is fear. There is fear of physicians and hospitals, and also fear of the unknown entity, the disease itself.They are in no position to ask questions from anyone, they just accept what treatment is given.
Then there are social factors, for example, a person feels ,if I fall sick, how do i get food for the family? When a patient is not able to accept that he has a dreaded disease, how can he be motivated towards treatment? he will not even start treatment, let alone adhere to it.
Patients of tuberculosis have a tendency to go into the denial mode. For years I have been hearing. "this cannot happen to me!" This is becuase of the mindset of the people. Deep rooted myths say that TB is fatal, and any person who gets TB spells doom for his family. There are horrifying cases on human rights violation because of TB. A Govt of India report says that 100,000 women are abandoned every year in india by their families, to die of disease and starvation if they have TB, and 300,000 children thrown out of school or forced to drop out of school to take up jobs if a wage earning parent gets TB.
In this scenario, I have found that just talking to the patients and their families works wonders.I am serving the poorest of the poor, and they need kindness and compassion and reassurance( apart from practical things like groceries if they are unable to work !). Again, education has to be simply packaged, comprehensive, non-judgemental, and essentially needs to involve other family memebers too. In special cases, where relevant, it needs to be extended beyond the family, to employers or adminstrators, as required.The first step towards treatment has always been diagnosis, but without education, even diagnosis is a challenge. The next step is acceptance and willingness on part of the patient, and practical as well as psychological support . Only then we come to giving treatment.
Let me know your views on this, and if there is anything else you need to know.
Yours, in His work,
Shelly Batra, MD
Thank you very much for the dialogue, no need to apologize for any delay. And by the way, I wanted to commend and compliment you on using multimedia and YouTube on telling the story of the people you serve. The videos are very powerful.
I am intrigued by your experience and appreciate how much you are doing to understand what your patients need beyond medicines. It is a great example for many.
It seems the fear element is pervasive among your patients/potential patients. In your experience treating and working with many, have you found any simple messages, something that could be broadcast, or put on a small card, that would appeal to this population and over time change their perception of the health care system? Or do you think it really requires much 1:1 work and maybe generational change?
I ask because I think there are patients in the United States as well, who to lesser degrees, are conditioned not to ask for more information/data from their doctors, maybe partially based on fear, and seeing if any techniques you've developed might be applicable here. I think our challenge sometimes (sadly), is "too much health care" rather than not enough.
Thank you again for your time and for bringing your ideas to the attention of an interested international audience.
All the best,
Thank you for your mail and kind comments.
I have a few observations that I would like to share with you. I have found that media images are retained in the memory,provided they are positive, powerfully worded,impactful and repetitive.An example of this is Rotary's Pulse Polio program, which starts 'advertising' by posters all over the country. This is followed by repeated 'bites'on TV, by filmstars and cricketers( who are greatly revered) extolling the virtues of polio drops and the need to accept it and bring babies for polio drops. Now when the Rotary workers go from door to door, which they do in many settings, the mind is already 'tuned' to recieve the message ( and the drops) that they have come to give.
But in other cases words fall on deaf ears, simply becuase they are mere words and not a solution. For example, if one were to teach correct handwashing techniques to minimise waterborn diseases, there will be no result, the reason being that the people who I serve do not get potable water to drink, let alone water for handwashing. And there is no money to buy soap.
So unless we can provide sustainable solutions, all education is useless, for it will not translate into results.
I have also seen that people who genuinely wish to serve the needy, they manage to find sustainable solutions, and can generate the funds to implement them.
Ted, which part of the world do you live in? I would like to invite you to india, to visit my low-cost, TB treatment centres in India's slums.
Yours, in His work,
I live in Washington, DC, when I am able to travel your way I would be delighted to see the work you are doing. Until then, I will follow along virtually. Thank you again for the information of your experience.
I shall be in W-DC from 8 -10 Nov to present my work at the mhealth summit 2010 at the Walter centre. Will you be at the conference by any chance? would be great if we could meet !
Yours, in His work,
Welcome to Washington! I have a conflict at this time but I will send you my contact information in case you are around before or after.
For the people viewing this conversation, you should post information about when you're speaking so they can see your presentation!
I shall be doing a demo of low-cost, hand held devices for tracking/identifying patinets, and will inform asap
shelly is a marvelous change maker, and hers is a most worthy endeavor. education is indeed power and shelly and her colleagues save lives through educating and treating disease for the poorest slum dwellers in the world.
Thank you Michael , for your kind words and appreciation. It has been an uphill task, no doubt. But there is a Light that guides my footsteps on this particular path, and that gives me courage and determination .
Thanks very much for work..I live in Kenya and i see you are doing good job. In fact am learning a lot from your project..Thankyou.
Thank you for your comments. Sandeep Ahuja, my CEO, will be visiting Africa and Morocco in October, and shall spend 3 days in kenya, with a view to understanding the Tb problem and local conditions. it would be great if you could connect with each other.
Please send me a mail at firstname.lastname@example.org
This seems like such a simple thing, but I can testify, as a volunteer here at Operation ASHA, that the education of the patients and their entire community truly does make for excellent results. I am so terribly impressed with Operation ASHA's program of service delivery. It is very simple, cost effective, efficient, and easily replicable! It is an honor to be working with a dedicated changemaker like Dr. Shelly Batra!
Thank you Linda. I believe that TB treatment needs a holistic approach, with education and community empowerment being the foundations for active case finding and MDR-TB prevention. Many thanx to you for having volunteered with OpASHA, for you are not only giving your time and talent to the NGO, you are training our staff for lasting benefits.
Congratulations on being selected as a finalist!
congratulations on being a finalist.....you and sandeep both deserve to be recognized for your outstanding mission and just amazing outcomes. great luck to you both ahead in your important work!
Prezado Dr. Shelly Batra,
Parabenizo-o pelo seu trabalho e empenho. Muito importante a construção de meios para fortalecer a disposição ao tratamento de enfermos de tuberculose.
Felicidades e sucesso.