The Clarity of an Expert Opinion Prevents Unnecessary Chemotherapy

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Reshma Singh, a 22 year old, working with a multinational in Pune received a call from her father. Her mother, Mamta, 50, who lived in Sehore, a small town midway between Indore and Bhopal was diagnosed with Resectable Ovarian Cancer following severe abdominal pain and was advised immediate surgery. There was a mass detected in the uterus which meant that a complete hysterectomy was deemed necessary. The family had to travel to Indore where, in consultation with a Laparoscopic surgeon at a private hospital, she underwent a successful procedure where the tumor was removed.

This was supposed to be the end of the ordeal but things turned out very differently. “That one week in the hospital post surgery was a stressful time for us where each doctor visit would cost us several thousand rupees” said Reshma. After a biopsy, the surgeon recommended that she go through a chemotherapy regimen of 7 cycles. “The doctor told us that this was a precautionary measure to ensure the cancer does not recur. This came as a shock to all of us. I also felt that the surgeon was pressuring us into starting an expensive and possibly unnecessary treatment.” A heated debate ensued within the family with some members feeling that the doctors word must be trusted and Reshma insisting that such a big step should not be taken without getting another unbiased opinion from an expert.

Reshma wanted to get an opinion from Tata Memorial Center in Mumbai but her mother was in no shape to travel. She reached out to TMC NCG Online, Navya Expert Opinion Service to get the advice of world renowned experts. She uploaded all her mother’s reports following which a patient advocate reached out to her to understand the medical history and to know what the family wanted to ask the experts. A clarification was sought about the marginal status of the surgery as well as the planned treatment.

The case was compiled and sent to an expert at the Gynecology disease management group and his opinion was sought. The response was that as per the globally accepted guidelines for the treatment of cancers, surveillance was the recommended course of option. This would require the patient to undergo a physical examination and a battery of recommended tests every 3 months for the next two years. Chemotherapy was not a recommended course of treatment at this time. The report was shared with Reshma who shared it with the elders in the family. “When my father saw that the Tata Cancer hospital doctors had given this opinion, there was a sense of relief.”

There is scarcity of cancer experts in India, located mostly in metropolitan cities, but the number of cancer patients in need of an expert opinion is in the millions. Traveling to consult an expert at each of the many treatment decision points is costly, logistically complex, and delays the onset of treatment. In this case, reaching out to TMC NCG Online -Navya Expert Opinion Service, meant that the patient was not administered Chemotherapy which would have been against globally accepted guidelines for that particular situation.

Urging family members of cancer patients, Gitika Srivastava, Founder of Navya, shares her personal viewpoint:  “Most people who have had any experience with cancer are aware of TMC and that it is one of the largest tertiary care centres in the world. However not everyone from far flung areas can come to Mumbai or is aware of the significance of a proper choice in treatment to a change in outcomes. Given the cases we have seen; we would urge everyone to get an expert opinion through TMC NCG Online. You can be assured that the opinion rests on the experience of world renowned cancer experts and follows evidence based protocols best suited to your loved one’s specific case.”

National Cancer Grid (NCG), tmc.gov.in/ncg Tata Memorial Centre (TMC) tmc.gov.in

The NCG is a consortium of 104 cancer centers, with a mandate to standardize cancer care, nationally. NCG is the largest global network of cancer centers collaborating to use technology and training to bring cancer expertise to every oncologist and cancer patient in India. TMC is Asia’s largest leading tertiary care expert cancer center, seeing over 67,000 cancer patients every year. Its strength necessitates a responsibility to make its expertise available to patients across India and developing countries, especially those who reside in locations where there are no expert cancer care centers.

Navya www.navya.info

Navya is a clinical informatics and patient services organization with a unique understanding of cancer patients and oncologists and a core commitment to cancer care. With a proven track record of successfully implementing innovative solutions that are low cost and effective, Navya is the first to develop technology systems specific to Indian cancer data for use by cancer patients and oncologists in India.
Contact:  Gitika Srivastava | gitika@post.harvard.edu

Twitter: https://twitter.com/NavyaCare

Facebook: https://www.facebook.com/NavyaNetwork/

LinkedIn: https://www.linkedin.com/organization/15236089/

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

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(Continued from previous post here)

We struggled with how to let my dad know about this upstaging. I intensely felt the need to protect him from bad news and at the same time the need for disclosure to move ahead. But I couldn’t move past the diagnosis and into treatment planning until he knew. We waited for his appointment that evening and then broke the news to him.

Perhaps overwhelmed by this unforeseen information, I dropped my guard. The urologist recommended surveillance to see if the cancer cells at the positive margins would grow. We did not start any anti cancer therapies. We were not even referred to see a radiation oncologist.

For a high-grade tumor that was outside the capsule of the prostate already, this approach should not have passed the smell test. But all the energy I had put into researching my options were now focused on helping dad recover from the surgery. We simply took the urologist at his word and waited. I didn’t even lookup my online medical references.

No surprise to anyone but us, the tumor markers quickly started inching up and doubling. Imaging showed that the recurrence was not spread in the body, and was still local. Alarmed, I went back to my information-first mode, and read every study on local salvage therapies. I was surprised to find out that early salvage radiation and hormones immediately after surgery were already becoming standard.

I discovered that in most other locally advanced tumors with a high grade, positive margins aren’t simply ignored, rather are treated with repeat surgery or adjuvant therapies!

Although reeling for lost time, I was also exceptionally thorough this time. We went through every possible radiation and hormone therapy option – to radiate the pelvic nodes or not, use protons or photons, what dose, to use short course or long course hormones or no hormones.

I read every study and guideline that was applicable. I spoke with every expert in the area I knew at UCLA, Stanford and nationally. I wanted to be certain that I was making a decision with the best information at hand.

After extensive discussions with my father on his preferences, and discussions with his radiation oncologist, we embarked on round two of beating his prostate tumor. My dad was fully aware of his diagnosis, his options, and his choice of therapy. The clarity of that knowledge and reassurance that we were doing everything possible gave us so much strength. Instead of being victims to the process and the disease, and have something to hide from and be protected from, we were open, clear, calm and as much in control as we could be.

That was almost 5 years ago. Luckily, my dad continues to have his 3 month check-ups that are coming back clear. He is not out of the window of recurrence just yet, but it is safe to say we are getting there.

Not all stories have happy endings. Despite being treated at the best cancer center in America, my aunt succumbed to inflammatory breast cancer in 2009. She was diagnosed the same year as my father, and we went through the same exhaustive search for therapies and options that we did with my father. When she went on hospice, she knew she had exhausted every option medical science could offer us at the time. I still carry that little piece of reassurance inside me today.

While my physicians have my best interests in mind, they are limited in ferocity as this is not their battle to fight. It is mine.

I see a diagnosis of cancer for what it is now. Without knowing the name of my enemy, I cede power of fighting to others. While my physicians have my best interests in mind, they are limited in ferocity as this is not their battle to fight. It is mine. Staying informed on the diagnosis, science behind the options, and the experience of true experts in the field is the only reassurance I can have that the best possible decision has been made.

-Dr. Naresh Ramarajan

Online Expert Opinion: www.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!

tmc.gov.in

tatatrusts.org 

 

Decision Making

flowers-164754_1280Decision making is about pros and cons.    I was on my way to Boston Logan, to catch my flight to Bangalore.  My cofounder called me, and said “it’s a Navya moment.”    There was a personal, family, decision that he was helping coordinate, while he was at the Maui airport to fly across the country to get to his family in New York City.   Between our flight schedules and travel times, we had about an hour or so to chat before certain important decision had to be made.   The clock was literally ticking, and we started our process.   He had looked up the papers that discussed clinical trials and retrospective analysis of individuals in similar circumstances as his kin.  (He will write about these experiences in a blog post, soon.)  The advantage of waiting versus proceeding with a surgery was about five days at most.   That, was the known.  The evidence.  That we could likely delay surgery by five days and gain the benefit that would bring.  However, the disadvantage, the unknown, the risk of any complication while waiting, far outweighed the known disadvantage (mandatory stay in a well-managed, top of the line, intensive care unit).   Then, the experts.    Experts known to us pointed to their experience of being able to manage any complexity of surgery at the time.   They were comfortable, confident, yet let us (the patient and the family) decide.  What did the patient want?  There was anxiety.  There was anxiety about the known and the unknown – what was worse?  What did she prefer?  Patient preference.  And then, the much talked about guidelines – the international guidelines that indicated that both, surgery and non-surgery were acceptable options at this time.  Brilliant!  Not helpful.   It was a Navya moment.  We had to reconcile, hold each other’s hands, and decide from the patient’s perspective.

There are many elements to decision making.  Evidence, experience, experts, and patient preference being the most measurable, computable, elements.  Guidelines of course are the most general and are the weakest link.   At the center though, is the process of utilizing and combining all of the above.  The Navya process, which is extendable from oncology to obstetrics decision making.   The gentle consideration, the conversations, the repeated conversations on the various considerations, the data, the people, the process.  Always results in a decision that is well thought out, bringing clarity, and rooted in the best evidence and experience of experts.   The Navya process that we followed in an hour long conversation lead to two beautiful outcomes, a pair of healthy baby twins, born at the right time to a mother who felt relieved with confidence in her decision. 

Evidence

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Today I was reminded that evidence matters.   Evidence is the premise of Navya.  It is where we started.   Why we started.  We added on Experience, Experts, Patient Preference, and always knew that Guidelines are a sum total of many things but not enough to make a patient-specific decision.  With so much noise about so many systems and so many sources of information, (from structured guidelines to unstructured patient blogs and doctor’s notes and specific institution practices), all away from the core of Evidence, (clinical trial data), I began to wonder whether our premise was not what many would value.  (What a convoluted sentence construction – pretty similar to the obscurity of that thought).  Evidence matters.  Experts (or should I say mother of all experts…!) at Tata Memorial Centre are singularly focused on how an evidence based system can empower their decisions, above and beyond what their experience and standard guidelines can already do.  That, is the hallmark of expertise.  The definition.  An evidence based expert decision.

When I was asked to momentarily scrap everything else and home in on the evidence based results of the Navya Expert System, and the informatics that enables it, I knew that my system is in the hands of the right critiques and the perfect users who will use it to empower their patients.  When I was reminded that it is the Navya Evidence Engine that is the heart and core of what an expert desires, I was reassured, reaffirmed, reignited to remain focused on what we set out to do:  use evidence to make treatment decisions that are uniquely applicable to an individual patient.

Thank you, Dr. G and Dr. B for your constant push and faith in evidence based expert decision making; and for the opportunity, the privilege, to build Navya with you.

 

An Expert Opinion makes the difference – not another 2nd opinion. Cancer patients know that difference.

11143552_1657596077813277_6232528969219220839_nWhen Naresh and I first started Navya, many asked us why we were setting-up an organization to offer second opinions. First, who would like to second guess their doctors, especially an oncologist (after all, cancer is a dreaded mystery for most); and second, it sounded like a basic service – what’s the value. We struggled hard to explain because our vocabulary was so new. Navya was an evidence and experience-based expert decision system. First, we were focused on empowering patients with all the relevant information, from every credible source, so there is no mystery, except the destiny of the Almighty. And second, we never proposed to enable an Nth confusing second opinion for any patient. We were focused on an expert opinion, a single consensus opinion that combined relevant and applicable knowledge from clinical trials, international guidelines, outcomes of similar patients, and true experts from only the handful of true expert centers. That reconciled opinion – the expert opinion – would remove all complexity of what treatment to undertake (preventive surgery or just sit tight… surgery first or chemotherapy… benefits of radiation versus risk of incontinence or infertility… chemotherapy or new targeted therapy or both… reinduction protocol or maintenance protocol or wait and watch…)

Navya and Tata Memorial Centre, one of the world’s largest tertiary care expert cancer centers, have empowered patients from over 34 countries, and most contently from developing countries and in remote towns in India, who would have otherwise not had the privilege of an expert opinion. Every cancer patient has the right to an expert opinion. Know, and let your friends know. Expert Opinion Online at navyanetwork.com/tmh is powered by the visionary support of Tata Trusts. Together, we are working to ensure that every cancer patient is comforted and strengthened with expertise to fight.

I am one of the founders of Navya, and it is a true privilege to have this opportunity.

– Gitika Srivastava

Navya: navyanetwork.com