Data Driven Doc: Staying Informed on the Diagnosis (Part 1 of 2)

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I’ve been told the events of the first time so many times, that I have a vivid memory of it now. My fathers mother, Bhuma, succumbed to a recurrent brain tumor that kept growing in the small confinement of her skull. When she was first admitted to a small hospital in Massachusetts, confused after a fall, my father was not at her side. My aunt had driven her to the hospital, and first received the news of impending brain surgery. But without my father around, my aunt couldn’t let my grandmother know. Bhuma was a woman who was in exquisite control of her world and those around her. To know that she was losing that control in a strange land would unravel her deeply, thought my aunt. Could she undergo surgery without knowing why?

Although common in South Asia and other parts of the world, this idea of keeping a diagnosis secret from the patient, especially one who needed a surgery, was foreign to the surgeon. As the story goes, my aunt stood between the surgeon and my grandma, and refused to translate a word of his English into her Tamil. The standoff continued until my father got there the next day.

Once my father arrived, my aunt gave up her shield to him. The energy of my family was spent in understanding the prognosis and explaining it to my grandmother. It did not occur to them to explore what treatments to do and in which sequence. It was 1989, and the trust in the surgeon was much higher than the trust in the patient.

After much reassurance from the surgeon, and not much understanding, my family consented to neurosurgery. The tumor was incompletely removed, and treated almost too conservatively. It came back again and again until there was no radiation or surgery that would stay it’s course.

I often wonder what Bhuma thought of all the medical decisions she relegated to her surgeon alone, and what sense of acceptance and calm allowed her to continue through the storm of medical care that pursued her the rest of her life. For a woman who consistently went out of her way to ensure that even her neighbors had their lives in order, the loss of autonomy and empowerment might have been frightening.

I often wonder what Bhuma thought of all the medical decisions she relegated to her surgeon alone.

Many years later, cancer found my family again. Freshly graduated from Stanford Medical School and an intern at UCLA, I felt ready to assume decision making for my father. When we were initially debating surgery vs radiation for early prostate cancer, I did exhaustive searches of the published research and expert reviews. I understood the side effects and the tradeoffs extremely well. My father became integral to the decision making. We made a calculated choice to go for surgery. My father strongly preferred to have the cancer out, and to have radiation available as a salvage option. The evidence and guidelines supported either choice, although each expert still had their preference in the matter. We were confident we had made the right choice.

So when my mother called me with her early online access to dad’s pathology report – I was saddened and grateful at the same time. The tumor was more aggressive than we thought, a Gleason score 9 instead of a 6, was not early and limited to the prostate but had invaded the surrounding tissues, and the margins were positive. There was still some of that cancer left behind.

We certainly would not have known this information without a surgery. My dad was in the small percentage of patients where the preoperative imaging and biopsies had not picked up the full extent of the disease. It was a lucky alignment of our decision and hindsight.

-Dr. Naresh Ramarajan

Online Expert Opinion: www.Navya.Care
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Expert Opinion for Cancer Care in 24 Hours

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TMC NCG Online – Navya Expert Opinion Service empowers patients with critical information within 24 hours enabling families to make robust decisions in cancer care with adequate inputs from oncologists at Tata Memorial Centre and National Cancer Grid (including cancer centers like AIIMS, Kidwai, Max Hospital, etc.). This service, available at www.navya.care, allows patients to upload their reports and get a response from world renowned experts.

Families seek to vet treatment plans with experts but it can be challenging as doctors often recommend the treatment start immediately to prevent cancer from advancing. Balancing the need to act quickly while ensuring the decision is made with all relevant inputs is when Navya’s Online Expert Opinion Service becomes a powerful ally.

While diagnosing the presence of cancer can be relatively straightforward, treatment is highly specialized and the number of experts experienced in managing complex cases is very few. Many cancers are curable or can be managed for a number of years if diagnosed early and treated appropriately. Choosing the right therapy can be the difference between the best possible outcome and failed treatment. Patients are able to receive the best possible treatment opinion which includes what therapy to choose (surgery, chemotherapy, radiotherapy or immunotherapy) as well as dosage, duration, side effects and other details pertinent to the treatment. The detailed report, that answers all questions asked by the patient in language that is simple to understand, can then be shared with the local oncologist to proceed with the treatment locally.

Maya Fonseca, 27, of Goa had a situation where following a routine checkup and follow up tests, her mother was diagnosed with stage IV cancer. The tests administered at the time were inconclusive as to the origin of the cancer. A slide review was recommended which would have taken 14 days but the treating oncologist advised that chemotherapy be commenced immediately. Maya and her family were understandably unsure of how and when to proceed with treatment. She reached out to Navya Online Expert Opinion Service and uploaded the reports. Navya’s patient advocate called her, got a thorough understanding of the case and noted all the questions that she wanted to ask the expert. The medical history along with evidence based treatment options were presented to an expert using Navya’s patented system for an opinion. The experts at Tata Memorial Centre were able to conclude that the medical reports and clinical history were consistent with cancer of the ovaries and chemotherapy was the next step followed by surgery.   On receiving the expert’s response, a report was created that answered all questions asked by the patient in language that was simple to understand. With the treatment opinion that included the chemotherapy, dosage and frequency, Maya’s mother was able to proceed with immediate treatment safe in the knowledge that she was making the right decision.

Urging families of cancer patients, Gitika Srivastava, Founder of Navya, says: “Most people who have had any experience with cancer are aware that given time and logistical constraints, it is not always feasible to go to tertiary care centers in metropolitan cities at each treatment decision point. Given the importance of treatment decisions in yielding the best possible outcomes, we would urge everyone to get an expert opinion through TMC NCG Online. We understand the anxiety in knowing what to do as quickly as possible, and hence have strived to ensure that we facilitate the opinion from the experts within 24 hours of getting all necessary medical reports. When making a decision on treatment, you and your oncologist can be assured that the opinion rests on the experience of world renowned cancer experts and follows evidence based protocols best suited to your specific case.”

Online Expert Opinion: Navya.Care

Tata Trusts: tatatrusts.org LinkedIn Facebook  Twitter

Tata Memorial Center: tmc.gov.in  Facebook

Navya: navyanetwork.com  LinkedIn  Facebook  Twitter

Quality vs. Quantity

umbrellas-205386_1280There are a lot of technologies out there.   How many of these are touching a patient?  A doctor?  An expert?  A family member?

Technology is the basis for results.  Without data, decisions cannot be made.  Without intuition and learning, a decision cannot be perfected.  There are a lot of technologies:  cognitive computing, artificial intelligence, natural language processing, machine learning, but that will not save a life.  Don’t let anyone fool you into believing that a system can save a life.  I’ve been a patient, a family member, a technologist committed to cancer care, and I can tell you that technology is insufficient and far from application-ready.

There is data everywhere.  I’ve written about this before.  But just as one does not need to know all the books written in this world to add two numbers, or be successful as an expert, there is a critical mass of knowledge that can be obtained and utilized effectively.  So don’t be fooled with vastness of data that one might possess.  Your grandma told you, it’s quality not quantity that matters.  So one need not know all the medical textbooks and clinical trials in the world to be a cancer expert, but one must certainly know all the relevant practice changing trials and have experience being an expert.

Your grandma told you, it’s quality not quantity that matters.

Ultimately, it is intent.  Why is a company building a technology.  Why is a doctor providing online opinions. How credible is it.   Does it matter that there is data on every single patient ever treated in my type of cancer, if my cancer is common or unique.  Think hard. Think wise.

Intent matters.  The use of technology with experts who want to enable patients – through a service that is only focused on patients and nothing else, requires very little buzzword technology, very focused data, a small number of true experts, a family of clinical analysts and patient advocates willing to serve patients as their own, and a large number of patients in a population that is struggling to get its basic needs met in cancer care.

Navya and Tata Memorial Centre in the Indian subcontinent, in 34 developing countries in Asia and Africa.

The patented Navya Expert System, the pioneering technology in evidence and experience-based treatment decision making and the one of a kind experts at Tata Memorial Centre.

Navya is committed to holding the hand of every cancer patient and lifting them to the same pedestal as everyone else in the world:  expert cancer care for all.

Navya is the only clinically validated end-to-end decision system in cancer treatment decision making.  The Navya system is patented and the first innovator in this field.  Use Navya at navyanetwork.com/tmh

You, your family, your friend, will always have us no matter the cancer to conquer or access to technology and data.  Access is always enabled through us, and our system, service, and experts empower for real, in a format that you can consume from home!

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