"Maybe, It's just your anxiety," said the specialist to Mary.
Mary had been on regular visits to the physician for the past 4 years for her persistent chest burns, fatigue, dizziness, and abdominal pain. She experienced various other symptoms, and every visit felt like she was being gaslighted about the severity of her symptoms before being referred to a specialist, a cardiologist. To see the cardiologist, Mary had to wait on a 6-month list. When she finally saw the cardiologist, he didn't bother to read her medical history and ordered the same tests. Another 6-month wait followed for the result review. After the long wait, the cardiologist stated that all tests were okay by his standards, dismissing Mary's continued feelings of sickness. Frustrated, Mary sighed,
"I would like a second opinion"
"Is my ability to give you a diagnosis being put on the line right now? Don't be hysterical"...
Mary highlighted the misogyny in the healthcare industry, especially towards women who are often gaslighted about their symptoms. She responded,
"Next to hysteria on my chart, indicate that I, the patient requested a second opinion"
"Okay, that would be $200, the bills will be forwarded to your insurance company."
Fortunately, Mary was referred to another empathetic cardiologist who collaborated with a Gastroenterologist to figure out Mary's diagnosis. They discovered Mary had stage 2 gastro cancer by running laboratory tests and various scans, inspired by another patient's case. This highlights the importance of collecting not just bulky data but quality data in research for healthcare treatment, detection, and prevention. Mary's diagnosis relied on another patient's medical quality data.
When the previous doctor told Mary it was just anxiety, her face showed relief mixed with frustration, a common experience for many women who often deal with health issues quietly. It's a look that says, "I've been here before." But it doesn't stop there. When the doctor brought up the bill, Mary's expression changed again. It's a look many patients know, feeling like just a number in a system that's more about paperwork and payments than personal care.
Shifting to a bigger picture and gathering good health information has its challenges. In another article about Body Mass Index (BMI), I talked about the difficulties in getting enough diverse information to understand health trends. It's like trying to learn about all kinds of fish by only studying one in a pond.
Then there's the issue of patient consent, getting permission to use someone's health info. Some people worry about it because, in the past, companies have misused this kind of information. Patient data has been sold or used for things patients didn't agree to.
Henrietta Lacks. (2024, January 4).
In Wikipedia.
Link
This brings us to the story of Henrietta Lacks, an African American woman whose cancer cells played a crucial role in advancing medicine. Her cells contributed significantly to cancer treatment, polio and HPV vaccines, and even the mapping of the human genome. Unfortunately, her cells were used for medical research without her or her family's knowledge. Henrietta's story underscores why it's crucial to obtain permission before using someone's health information. The collection of quality data, as seen in Mary’s case, where someone else's diagnosis data helped figure out her illness.
The difference between the person whose data helped in figuring out Mary’s illness and Henrietta's is significant. In Mary's case, the doctor, guided by experience, used the information appropriately without taking advantage or seeking profit. In Henrietta's case, she wasn't informed about the use of her cells, and even though they contributed to medical breakthroughs, they were also used for profit. Controversies arose concerning the privacy and consent surrounding Henrietta Lacks' cells. It is disheartening to consider that a woman whose battle with cancer played a pivotal role in advancing medical breakthroughs had her family resort to legal action to safeguard her consent and dignity, even posthumously. Meanwhile, a company profited from the use of these cells. Such instances contribute to a broader issue where individuals harbor skepticism towards consenting for the access and utilization of their medical data. This skepticism has repercussions, leading to a reduction in research samples and impeding the collection of intricately detailed and documented data crucial for diagnosis and other research. This underscores the vital importance of respecting individuals' choices regarding their personal information.
In the world of health data, finding a balance is crucial. While our goal is to learn and discover new things, we must also respect people and their privacy. It's a bit like walking on a tightrope — tricky but important.
Mary had been on regular visits to the physician for the past 4 years for her persistent chest burns, fatigue, dizziness, and abdominal pain. She experienced various other symptoms, and every visit felt like she was being gaslighted about the severity of her symptoms before being referred to a specialist, a cardiologist. To see the cardiologist, Mary had to wait on a 6-month list. When she finally saw the cardiologist, he didn't bother to read her medical history and ordered the same tests. Another 6-month wait followed for the result review. After the long wait, the cardiologist stated that all tests were okay by his standards, dismissing Mary's continued feelings of sickness. Frustrated, Mary sighed,
Mary highlighted the misogyny in the healthcare industry, especially towards women who are often gaslighted about their symptoms. She responded,
Fortunately, Mary was referred to another empathetic cardiologist who collaborated with a Gastroenterologist to figure out Mary's diagnosis. They discovered Mary had stage 2 gastro cancer by running laboratory tests and various scans, inspired by another patient's case. This highlights the importance of collecting not just bulky data but quality data in research for healthcare treatment, detection, and prevention. Mary's diagnosis relied on another patient's medical quality data.
When the previous doctor told Mary it was just anxiety, her face showed relief mixed with frustration, a common experience for many women who often deal with health issues quietly. It's a look that says, "I've been here before." But it doesn't stop there. When the doctor brought up the bill, Mary's expression changed again. It's a look many patients know, feeling like just a number in a system that's more about paperwork and payments than personal care.
Shifting to a bigger picture and gathering good health information has its challenges. In another article about Body Mass Index (BMI), I talked about the difficulties in getting enough diverse information to understand health trends. It's like trying to learn about all kinds of fish by only studying one in a pond.
Then there's the issue of patient consent, getting permission to use someone's health info. Some people worry about it because, in the past, companies have misused this kind of information. Patient data has been sold or used for things patients didn't agree to.
In Wikipedia. Link
This brings us to the story of Henrietta Lacks, an African American woman whose cancer cells played a crucial role in advancing medicine. Her cells contributed significantly to cancer treatment, polio and HPV vaccines, and even the mapping of the human genome. Unfortunately, her cells were used for medical research without her or her family's knowledge. Henrietta's story underscores why it's crucial to obtain permission before using someone's health information. The collection of quality data, as seen in Mary’s case, where someone else's diagnosis data helped figure out her illness.
The difference between the person whose data helped in figuring out Mary’s illness and Henrietta's is significant. In Mary's case, the doctor, guided by experience, used the information appropriately without taking advantage or seeking profit. In Henrietta's case, she wasn't informed about the use of her cells, and even though they contributed to medical breakthroughs, they were also used for profit. Controversies arose concerning the privacy and consent surrounding Henrietta Lacks' cells. It is disheartening to consider that a woman whose battle with cancer played a pivotal role in advancing medical breakthroughs had her family resort to legal action to safeguard her consent and dignity, even posthumously. Meanwhile, a company profited from the use of these cells. Such instances contribute to a broader issue where individuals harbor skepticism towards consenting for the access and utilization of their medical data. This skepticism has repercussions, leading to a reduction in research samples and impeding the collection of intricately detailed and documented data crucial for diagnosis and other research. This underscores the vital importance of respecting individuals' choices regarding their personal information.
In the world of health data, finding a balance is crucial. While our goal is to learn and discover new things, we must also respect people and their privacy. It's a bit like walking on a tightrope — tricky but important.
Original Post Date: 2023-11-27 at 2:00 PM