Tag: Cancer

Two Distinct States of Mind

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As a young medical student, I saw a person dying. Fluid was filling his lungs as a heart valve had ruptured from a massive heart attack a few days earlier. I did not have the ability to save his life where I was working — no immediate ICU or surgical care was available. It struck me later that I had the choice of disclosure. Should I have told him and his wife that he was dying? Would there have been a few minutes of “I love yous” and goodbyes? Or, would ensuing panic be all that remained etched as the last few memories?

Working in the developing world, non-disclosure to the patient, and their right to not know all about their healthcare is the default. Patients entrust decision making and autonomy to their family members, and many times, they are implicitly aware that they are not fully in the loop. Families also do not want diagnoses of terminal illness disclosed to patients. The enduring belief is that this will shorten their life and remove potential for happiness. In cultures accustomed to death at any age, dying is seldom discussed. It often happens, at home, with family, silently, without much accompanying discussion.

It has always struck a chord with me that the dying are aware that they are passing away. The ebb of the body’s energy is not mistaken at the end of times for something else. Spoken or not, it is implicit in every interaction.

In cultures accustomed to death at any age, dying is seldom discussed.

Yet, friends often describe a loved one’s passing from cancer as “sudden” or “unexpected”. “He was doing fine”- in the house in bed, or in the hospital ward, until he fell sick and passed in a matter of days. Despite a terminal diagnosis of advanced refractory cancer, the story that is told is one of death arriving without a warning.

I believe that there are two distinct states of mind— one of caregiving, and the other of grieving. These cannot coexist easily. The caregiver, even the self, nurtures the past and hopes for the future, since the present is intolerable. The grieved, instead lives solely in the past, and rewrites history to make sense of the powerlessness to change the future.

Physicians struggle with this. As a patient transitions from curative to comfort driven measures, they raise the specter of disclosure, of poor prognosis and impending death, as a way to absolve themselves of any guilt, any way to impact the future. Rarely, this is needed in the developing world. As a gross generalization, bucket lists are the privilege of the healthy and wealthy. Otherwise, many families are already together, at home, with their loved ones, in the non-medicalized ritual of dying that is as ancient as our cultures.

What is forgotten is that no one knows the future. We play with probabilities and pretend that they are certainties. The removal of hope for families and self leaves very little to get through the everyday with. Much has been written about living a pain free day, the taste of something special, or watching a grandchild at play. But there is also the balm of improbable hope, balanced with measured, comfort providing interventions, that allow family and patient to weather the present.

There will always be time for grieving. I am now beginning to see the wisdom of not starting that process while our loved ones are still with us.

-Dr. Naresh Ramarajan

 

Online Expert Opinion: www.Navya.Care

Tata Trusts: www.tatatrusts.org

Tata Memorial Center: www.tmc.gov.in

Navya: www.NavyaNetwork.com

Navya Scales Access to Rare Cancer Care Expertise and Tailors Evidence-based Treatment Plans to Individuals Based on Affordability and Access to Therapies

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Navya Press Release img1

Navya Presents Joint Study with National Comprehensive Cancer Network at San Antonio Breast Cancer Symposium, December 5-9, 2017

CAMBRIDGE, Mass. and SAN ANTONIO, Texas – Dec. 8, 2017 – “TMC NCG Navya Online” (Navya) has scaled access to rare cancer care expertise, tailoring evidence based treatment plans to individuals based on affordability and access to therapies. Navya, a clinical informatics system and online expert opinion service, provides evidence based multidisciplinary expert opinions within 24 hours to thousands of cancer patients around the world. Navya learns from evidence, prior tumor board decisions and quick review from expert oncologists to recommend tailored treatment plans to patients at all levels of affordability.

A joint study presented at San Antonio Breast Cancer Symposium on December 8, 2017 by National Comprehensive Cancer Network (NCCN) and Navya demonstrated that 88.3 percent of Navya’s treatment decisions mapped to NCCN’s Resource Stratified Framework (NCCN-RSF) for Lower Middle Income Countries (LMIC).

Navya is sensitive to the needs of resource constrained patients.  Expert oncologists from Tata Memorial Centre (TMC) – one of Asia’s largest tertiary cancer centers, and National Cancer Grid (NCG) – a consortium of 108 cancer centers and specialty centers in India, provide online opinions to patients via Navya.

In most of the world, the cancer burden is disproportionately greater than the scarce access to tumor board expertise.  Patients often do not receive evidence based treatment plans. Further, patients are resource constrained and are unable to afford or access therapies that are optimal per global guidelines like NCCN.

Since its creation in 2015, over 17,000 patients from 22 LMIC’s have reached out to TMC NCG Navya Online to receive an online expert opinion.

Dr. Ben Anderson, vice chair of the NCCN Breast Panel and chair of the NCCN International Program Committee and the senior author of the study said, “While there is significant drug discovery and treatment  research happening worldwide to combat cancer, the therapies are often unviable to LMIC. Tailoring treatment plans to patient constraints is critical and Navya’s online expert opinion service does that in a scalable manner.”

Dr. Rajendra Badwe, Director of Tata Memorial Centre, stated, “In India and low and middle income countries, patients are challenged to receive evidence based therapies within available resources. NCCN-Resource Stratified Guidelines is an attempt by a globally reputable standard of care organization to determine treatment pathways based on resources.  This study shows that only 8.6 percent of parent NCCN guidelines could be mapped directly to patient care in India.  Additionally, 79.7 percent required tailoring for resource constraints, and even so 11.7 percent of guidelines did not map.  There are several expert practices in India that are not yet included in the global guidelines.  For instance, unlike TMC’s clinical practice, NCCN-RSF does not recommend shorter courses of expensive targeted therapies like Trastuzumab for patients who cannot afford year-long therapy.  Our informatics system captures and disperses such expertise to resource constrained patients nationwide.  NCCN can scale adoption and learning of resource constrained treatment guidelines by leveraging on the ground systems.”

Dr. Naresh Ramarajan, Founder of Navya and Chief Medical Officer further stated, “Navya’s vision is to transform delivery of cancer expertise to impact cancer care at a global level. This study shows that the informatics based system and online service is scalable and individualized to each patient’s condition and constraints. Expanding the reach of this service across the developing world can maximize outcomes for financially underprivileged patients.”

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

The NCG is a consortium of 108 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.

Twitter: https://twitter.com/NavyaCare
Facebook: https://www.facebook.com/NavyaNetwork/
LinkedIn: https://www.linkedin.com/company/15236089

Contact:  Gitika Srivastava | gitika@post.harvard.edu

Tata Memorial Centre (TMC) National Cancer Grid (NCG) Online – Navya Expert Opinion Service: Empowering cancer patients with expertise and information on their treatment options

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Navya Press Release img1

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 . This service, available at www.navya.care, allows patients to upload their reports and get a response from world renowned experts.

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.

Since 2015, over 12,000 patients from 22 developing countries have reached out to Navya to get expert opinions. Abdul Rahman, who lives in Erbil, in the Kurdish region of Iraq, had previously undergone surgery for pancreatic cancer. Five year later, he started experiencing acute pain in his abdomen and a subsequent CT scan showed a tumor on his liver that had metastasized to his lungs. The local physician asked his family to take him to a tertiary care center that could adequately advise a treatment plan and recommended Tata Memorial Center in Mumbai, India.

Abdul’s brother in law, Haseeb, started evaluating the logistics of traveling to Mumbai and found that the travel and lodging expenses for a trip for him and Abdul would be upwards of $5000. Further, the procedure of getting a medical visa would take at least a few weeks. They would also need to travel with no visibility on how long they would need to stay in Mumbai as they did not know what treatment would be recommended.

Haseeb started finding out more about Tata Memorial Center by going online when he came across the TMC NCG Navya expert opinion service. He was initially skeptical about the veracity and thoroughness of the service as he did not know if it would be comparable to making a trip to Mumbai. He decided to register at www.navya.care and explore the service further.

On registering, Haseeb received an email that explained the complete process that the expert opinion service followed. He would need to upload Abdul’s reports, which would then be summarized and sent to relevant experts at Tata Memorial Center who would provide a treatment plan that would be detailed in a patient report. This patient report could then be shared with the local physician in Erbil and he could be treated there. “The expert opinion service was a boon to us as this was more convenient and cost effective than traveling to Mumbai and Abdul could get treated locally”, said Haseeb Mohammad.

The necessary reports were uploaded following which a patient advocate spoke to Haseeb to understand the case in detail. Some additional reports were sought which the family had but didn’t know were relevant. “I found the person who spoke to me to be very empathetic and thorough in understanding the history of the case. This gave us comfort that the case was being comprehensively analysed.” He was immediately able to upload the additional reports that had been requested.

The case was summarized and sent to a gastrointestinal expert who had trained at National Cancer Institute designated cancer centers such as Harvard, Stanford and UCLA affiliated cancer centers. The expert’s recommendation was detailed in a patient report and the treatment plan included chemotherapy that could be administered in the local hospital. The report was shared with the local physician who started the treatment immediately.

Mr Haseeb said: “Our experience with the online expert opinion service was all that we had hoped for and more. In addition to it being cost effective and quick, we were able to get a treatment plan from an expert without the patient having to travel long distances. The patient advocate was thorough, the process was efficient and the report that we received was detailed and the treatment plan followed international guidelines. Our doctor in Erbil felt that we had made the right choice in approaching TMC NCG Navya online to get an expert opinion.”

Families seek to vet treatment plans with experts but often access to experts is limited. 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. The timely response from experts through Navya has meant that the treatment followed standards accepted globally and may have been the difference between a failed treatment and the best possible outcome.

Making Complex Decisions When Confronted With Conflicting Opinions

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Dr. Ramesh, a dermatologist from Tirupathi, traveled to Chennai with his father-in-law, Mr. Subramaniam, who had been diagnosed with prostate cancer. It had been diagnosed at an early stage and there was a good chance that the right treatment could lead to a complete cure. Mr. Subramaniam was a fit 61-year-old who went for walks in the morning and was in great physical shape. He looked forward to beating the disease. Owing to the contacts of Dr. Ramesh, they were able to get appointments with two oncologists at a top private hospital in Chennai. They felt enthused that this trip would be successful and that they would get clarity on the path forward. After they met with the two specialists, the family seemed more confused than ever. The surgical oncologist recommended immediate surgery and the radiation oncologist opined that radiation followed by chemotherapy would be the recommended course of action. Even though both of these specialists were practicing in the same hospital, the patient needed to take separate appointments and the treatment advice was contradictory with neither consulting the other.

Cancer decisions are complex as they require multidisciplinary opinions.  Treatment plans need to be decided by a group of doctors who discuss and weigh the pros and cons of the various treatment paths. In a tertiary care center like Tata Memorial Center or Stanford Medical Center, a case like this would involve a decision being made by a tumor board. A tumor board typically consists of a diagnostic radiologist, pathologist, surgeon, medical oncologist and a radiation oncologist getting together in the same room to discuss the case. A decision is first taken on the diagnosis and staging of the disease where the pathologist and diagnostic radiologist weigh in. Once this is completed, the surgeon, medical oncologist and radiation oncologist decide on the treatment path. The intent is to recommend a path that will provide a complete cure or extend years of cancer free survival or improve quality of life. This can be possible through surgery if the disease is localized and operable. Sometimes the surgeon will suggest that the tumor be shrunk through chemotherapy or radiation and then the patient get operated. Having all relevant specialists weigh in and review the case is the ideal scenario but this is unfortunately not the modus operandi in most hospitals.

Given the contradictory paths presented to them, Dr. Ramesh decided to approach Tata Memorial Center. They became aware of the online opinion service available and registered on www.navya.care. He uploaded all of his father-in-law’s reports following which a Navya clinical analyst reached out to him to not only understand the medical history but also all questions they needed answered. “We believed that we had gone to one of the best hospitals in South India and had met with two reputed oncologists. Even though I am a doctor myself, we were in a quandary as we were given contradictory opinions. Given this situation, we wanted to know from Tata Memorial Center how we should proceed in this case. Navya expedited our request and within 24 hours, we got a report that included the consensus of opinions from three experts including a surgical oncologist, a medical oncologist, and a radiation oncologist. The report was detailed and mentioned all of the treatment options and the reasons for recommended path. A clinical trial was also considered which gave us the peace of mind that no stone was left unturned.” The treatment recommended was to follow chemotherapy at this time and then consider definitive or curative therapy which could either be surgery or targeted radiation. The path was clear and the patient underwent a cycle of chemotherapy and the family heaved a collective sigh of relief.

Gaining access to even one oncologist can be challenging. Consulting more than one is often not possible, and even when it is, it takes up significant time. Given the criticality of timely treatment, the process of consulting several oncologists can be physically and emotionally draining and can lead to contradictory opinions which lead to confusion. To ensure that the treatment plan is comprehensive and is arrived at after considering all options, Navya processes cases by incorporating opinions of several experts from renowned cancer centers such as Tata Memorial Centre or expert centers such part of National Cancer Grid. Using Navya’s ExpertApp, case details and possible treatment options are sent to multiple experts who discuss the case online and build a multidisciplinary consensus opinion.

Says Dr. Abhishek Mahajan, a diagnostic radiologist at Tata Memorial Centre:”I am able to look at DICOM (Digital Imaging and Communications in Medicine) images to confirm the diagnosis and staging of the cancer. In some cases, there can be a question of the origin of the cancer. In one case, the treating oncologist needed to know whether it was a case of liver cancer or if it was a cancer that had spread to the liver.” The therapies recommended for each of these cases could be very different.

“Treatment decision making in oncology is essentially a joint discussion between all care givers, aiming towards the best course forward for the patient. At times, only surgery and radiation may suffice without chemotherapy, or chemotherapy and radiation can make surgery easier, and at times single modalities of treatment like chemotherapy or radiation may be all that the patient requires. What matters most is the optimal timing and selection of right modality of treatment. Navya, through the online ExpertApp, brings together a nuanced consensus from opinions of all the experts, in a language and manner understandable to all stakeholders, thus the best possible care for the patient” says Dr. Tushar Vora, medical oncologist at Tata Memorial Center.

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 centers 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 online at http://www.navya.care.  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 http://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/company/15236089