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

shutterstock_262687568

(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

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

shutterstock_262687568

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
Tata Trusts: tatatrusts.org LinkedIn Facebook  Twitter
Tata Memorial Center: tmc.gov.in  Facebook
Navya: navyanetwork.com  LinkedIn  Facebook  Twitter

Major Digital Health/Healthtech/Health 2.0 Trends for 2017 (Part 3)

photo-effect-359981_1280

First, I will define digital health/healthtech/health 2.0 as products and services that rely on using the Internet and digital data (versus paper or physical contact/in-person consultations), to better the overall physical or mental health of an individual. This does not include medical devices or pharmaceutical.

The major trends for 2017 include using information technology and Internet, of which mobile is a significant component, to do the tasks that patients and physicians or other service providers would ordinarily do, but at a faster, cheaper, and larger scale i.e. to reach a global network without incurring added costs of time and money. Unlike in other industries, healthcare does not allow immediate and ground-breaking leaps in the use of information technology to do new and powerful things that were otherwise not already possible, for example, offering a treatment or diagnosing using the Internet.

Offering a treatment or diagnosing using the Internet.

A few years ago, as an early stage startup investor in Boston, I came across technologies that proposed to use video games to treat Attention Deficit Disorder, or rely on patterns in mobile phone usage to diagnose and manage depression, or leverage the iPhone camera to send images to ophthalmologists to diagnose eye infections in rural India, or attach monitors to cell phones as an electrocardiogram device.

These innovations tread on diagnosing and treating, and must be tempered by regulation and clinical trial validations before adopted use. This is beyond what digital health/healthtech/health 2.0 can reasonably promise to deliver, as the intricacies of the healthcare and legal landscape intervene.

The success of such innovations, measured by adoption and use in the clinical world, is yet to be seen.

However, leveraging technology to improve performance of products and services that already exist, and that improve healthcare delivery as it exists today, is a fair game for digital health/healthtech/health 2.0. This can be boiled down to some key trends.

Trend #3 – Keeping track with the mobile phone

A lot of physical barriers of time and place are broken by the mobile phone today. The mobile phone basically goes wherever you go, no matter where the data or the person who matter to you, resides.

The mobile allows workflow optimizations, such as scheduling and reminders for doctor’s visits, prescription pickup, taking medications, or accessing your health records when you’re on the go.

Secure access to data on the cloud, and on-the-go use of the mobile phone will dominate how patients manage their health matters on a day to day basis. Most likely, there will be more free services and mobile apps that enable such conveniences for patients, and make the experience of interaction with doctors and providers more pleasant and convenient.

Monetization of such conveniences has traditionally been done by collection and sale of data, which in healthcare is valuable (for pharmaceutical companies) but protected by privacy laws (as it should be).

However, when service providers such as a doctor’s office allows you the convenience to complete the medical form on your mobile while you’re waiting in the lobby, driving to the doctor’s office in your cab, collects feedback via a quick alert to your phone on your way out, or allows scheduling to happen via a chat message versus waiting on the phone listening to Muzak for many minutes, there is significant arbitrage of time and money for convenience and pleasantness of experience.

Mobile apps will enable such experiences and enrich the patient, physician, and service providers with time and workflow optimizations. Mobile apps offering several small conveniences in the logistics of healthcare delivery and consumption, will be an enabling trend in the coming years.

– Gitika Srivastava

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

Major Digital Health/Healthtech/Health 2.0 Trends for 2017 (Part 2)

photo-effect-359981_1280

First, I will define digital health/healthtech/health 2.0 as products and services that rely on using the Internet and digital data (versus paper or physical contact/in-person consultations), to better the overall physical or mental health of an individual. This does not include medical devices or pharmaceutical.

The major trends for 2017 include using information technology and Internet, of which mobile is a significant component, to do the tasks that patients and physicians or other service providers would ordinarily do, but at a faster, cheaper, and larger scale i.e. to reach a global network without incurring added costs of time and money. Unlike in other industries, healthcare does not allow immediate and ground-breaking leaps in the use of information technology to do new and powerful things that were otherwise not already possible, for example, offering a treatment or diagnosing using the Internet.

A few years ago, as an early stage startup investor in Boston, I came across technologies that proposed to use video games to treat Attention Deficit Disorder, or rely on patterns in mobile phone usage to diagnose and manage depression, or leverage the iPhone camera to send images to ophthalmologists to diagnose eye infections in rural India, or attach monitors to cell phones as an electrocardiogram device.

These innovations tread on diagnosing and treating, and must be tempered by regulation and clinical trial validations before adopted use. This is beyond what digital health/healthtech/health 2.0 can reasonably promise to deliver, as the intricacies of the healthcare and legal landscape intervene.

The success of such innovations, measured by adoption and use in the clinical world, is yet to be seen.

To better the overall physical or mental health of an individual.

However, leveraging technology to improve performance of products and services that already exist, and that improve healthcare delivery as it exists today, is a fair game for digital health/healthtech/health 2.0. This can be boiled down to some key trends.

Trend #2 – Leveling information disparity

Access to medical information including evidence (i.e. published clinical trial data) and outcomes of patients at expert centers, unlocks the ability for any physician to make expert grade treatment decisions for their patients.

The Internet and mobile apps allow for such information to be easily disbursed to physicians, and machine learning on data allows for intelligence to be computed and disseminated to everyone, and not just the specialists at referral centers. This allows physicians in small and remote centers and in the developing world, to have access to the same high quality information that experts at academic centers have usually been equipped to access and use.

Such leveling of information disparity can be seen in every facet of the clinical landscape, where intelligent targeted search engines can make information consumable and ubiquitous around the world. Insurance companies can rely on high quality evidence and experience data to make good decisions about treatments.

Machine learning, clinical informatics, and predictive analytics of medical and patient data will dominate the way clinical decisions are made and executed henceforth.

The next post will conclude my discussion of these trends.

– Gitika Srivastava

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