This is the time of year just after spring break when I enter the stress zone of planning the summer vacation.
I'm always on the quest of making everyone happy.
Finding some place that I can afford, where the kids will have fun and maybe get to experience something new, is always a challenge.
So, I search the internet far and wide for good deals and destinations. One site that I always check out is Trip Advisor.
This travel website is populated with information on hotels, resorts, air fare, deals, and even food and restaurants. But the heart of the site is the traveler reviews. These often number in the hundreds depending on the location and are many times candidly verbose.
Visitors can even give a score which is tallied at the top of the review to help you sort through the list.
So what does that have in common with health care research?
Well, frankly, if you relied completely on Trip Advisor you probably would never travel any where.
Let me show you what I mean.
Last year I thought I planned the perfect vacation (turned out, I did according to the family). We used every (I mean, every) frequent flyer mile I had and the four of us traveled to Kona, Hawaii, one of the most beautiful and mysterious places on earth.
We stayed at the Fairmont Orchid in Kamuela which is on a grand beach on the west side of the Big Island. The grounds are impeccable, the staff is always at your beck and call, and virtually every room has a nice view. I'm a member of the President's Club so the kids were able to get free internet as well as discounts on beach gear.
From the turtles that lounge on the beach to the prettiest sunset in the world, I could live there.
Now to Trip Advisor: here are the top reviews currently --
"I have to say that while we love the Fairmont, the level of service has become uneven, if not somewhat mundane."
"The service was average - long waits and average staff at breakfast. Room was nice, but dated. I saw three cockroaches in the hotel. The grounds were lovely but the overall experience was not worth the cost."
"For the price of this hotel, the room was a disappointment. First of all we were on the bottom floor, with people walking by constantly, so there was very little privacy. The bathroom had dust and dirt on the shelves, and the wall was filthy. There were 2 moldy pictures beside the bed..."
The take home message here is that each person has their own experience, and it is impossible to make everyone's stay perfect.
We live in a society where expectations often exceed reality. There is just no way to make everyone happy and provide perfection no matter how much you strive for this level.
That brings me to health care.
I recently had a lengthy discussion with someone regarding online treatments for a medical condition. He had done considerable research, wanted to know the ins and outs of every perturbation of treatment, and why some people reported good results and some did not.
He finally wanted my opinion, and wanted me to weigh in on making a further review of these treatments and these patient experiences.
He just couldn't understand why some patients didn't report perfect results with at least one treatment.
I told him that unfortunately it doesn't work that way. Every patient will have a different experience with virtually every treatment or procedure.
Sure, there is an "expected" outcome. But we are dealing with a human body that is dissimilar from every other one on earth. You just can't expect similarity.
But to even be more accurate, we are dealing with humans and their own expectations of what a successful outcome should be. And that is even more challenging than the biophysics and physiology. Humans rarely agree on anything.
So the take home message here is that research on medical procedures and treatments can be very valuable, but you should always take into context the individual nature of the reviews.
Otherwise, you would never travel anywhere, and you would never make a health care decision that could improve your life.
Showing posts with label internet. Show all posts
Showing posts with label internet. Show all posts
Wednesday, March 23, 2011
Sunday, March 6, 2011
What Are the Odds? Why information discovery about cancer on the internet might be like online gambling
By Linda Timmerman, Ed.D.
You might think the first place you visit after being told you have cancer would be to a cancer doctor, or oncologist.
But you'd be wrong.
The first stop for most of us? The internet.
Google any form of cancer, and a plethora of websites are instantly available. Some are good, and some are downright dangerous (but that's for another blog).
We tell ourselves we're looking for information about the disease, where to seek treatment, what types of treatments are available.
But what we really want to know is "what's the prognosis?"
"Can I survive this cancer?"
"What are my chances?"
"How long do I have?"
I remember the evening a friend and colleague called and said, "Can you come over? The doctor says I have esophageal cancer, and my wife and I just need to talk."
Truthfully, I didn't even know there was such a thing as esophageal cancer -- so before grabbing my car keys and husband, I starting Googling.
Unfortunately, my friend and his wife were doing the same thing.
By the time we arrived at their home, they were completely focused on the statistics: the 5-year survival rate ranges from 70% to 5% depending on the stage of the cancer at diagnosis.
His first words were, "this thing is going to kill me."
I certainly advocate knowing everything you can about your disease. Some cancers have low survival rates primarily because by the time symptoms appear the cancer is too entrenched or has spread.
It's the nature of the beast.
But how one copes with and acts on this information is vital, I believe, for every survivor traveling the road to the new normal.
Greg Anderson, diagnosed with stage IV lung cancer and given 30 days to live in 1984, went on to found the Cancer Recovery Foundation. He interviewed over 16,000 cancer survivors who had been told they were "terminal" and shares their wisdom in his book, Cancer: 50 Essential Things To Do.
It's a "must read" for survivors. Cancer, say Anderson, must be dealt with on all levels: physical, psychological, and spiritual.
When I was diagnosed with breast cancer in 1997, my first act was to look to the sky and ask, "Oh God, what am I supposed to learn from this?"
On hearing the diagnosis of bladder cancer just last year, my first thoughts were, "Obviously, I'm a slow learner."
To live with cancer, we must know and believe that we can have a quality life and achieve wellness. If the five-year survival rate is 2%, then focus your energy on being in that 2% group.
Emile Coue, a nineteenth century pharmacist in France, encouraged his patients to practice positive affirmation rather than focusing on the fears associated with a serious illness.
His words still ring true: "Every day, in every way, I am getting better and better."
Linda Timmerman, Ed. D. is a two-time cancer survivor and life long educator. She blogs regularly about cancer survival and real information from real people with the disease.
- Posted using BlogPress from my iPad
You might think the first place you visit after being told you have cancer would be to a cancer doctor, or oncologist.
But you'd be wrong.
The first stop for most of us? The internet.
Google any form of cancer, and a plethora of websites are instantly available. Some are good, and some are downright dangerous (but that's for another blog).
We tell ourselves we're looking for information about the disease, where to seek treatment, what types of treatments are available.
But what we really want to know is "what's the prognosis?"
"Can I survive this cancer?"
"What are my chances?"
"How long do I have?"
I remember the evening a friend and colleague called and said, "Can you come over? The doctor says I have esophageal cancer, and my wife and I just need to talk."
Truthfully, I didn't even know there was such a thing as esophageal cancer -- so before grabbing my car keys and husband, I starting Googling.
Unfortunately, my friend and his wife were doing the same thing.
By the time we arrived at their home, they were completely focused on the statistics: the 5-year survival rate ranges from 70% to 5% depending on the stage of the cancer at diagnosis.
His first words were, "this thing is going to kill me."
I certainly advocate knowing everything you can about your disease. Some cancers have low survival rates primarily because by the time symptoms appear the cancer is too entrenched or has spread.
It's the nature of the beast.
But how one copes with and acts on this information is vital, I believe, for every survivor traveling the road to the new normal.
Greg Anderson, diagnosed with stage IV lung cancer and given 30 days to live in 1984, went on to found the Cancer Recovery Foundation. He interviewed over 16,000 cancer survivors who had been told they were "terminal" and shares their wisdom in his book, Cancer: 50 Essential Things To Do.
It's a "must read" for survivors. Cancer, say Anderson, must be dealt with on all levels: physical, psychological, and spiritual.
When I was diagnosed with breast cancer in 1997, my first act was to look to the sky and ask, "Oh God, what am I supposed to learn from this?"
On hearing the diagnosis of bladder cancer just last year, my first thoughts were, "Obviously, I'm a slow learner."
To live with cancer, we must know and believe that we can have a quality life and achieve wellness. If the five-year survival rate is 2%, then focus your energy on being in that 2% group.
Emile Coue, a nineteenth century pharmacist in France, encouraged his patients to practice positive affirmation rather than focusing on the fears associated with a serious illness.
His words still ring true: "Every day, in every way, I am getting better and better."
Linda Timmerman, Ed. D. is a two-time cancer survivor and life long educator. She blogs regularly about cancer survival and real information from real people with the disease.
- Posted using BlogPress from my iPad
Location:Stonewall Dr,Streetman,United States
Thursday, February 24, 2011
The new pandemic: Will viral social media lead a health care revolution?
As we watch events unfold around the world with social media orchestrated revolution you can see the power that this new media can play in change.
First in Egypt, and now in Libya, millions of people are hearing about democracy and demanding change via smart phones and iPads over the internet.
What started as merely a march toppled a world leader.
So can social media create these same kind of changes in health care?
Today the ability to stay connected almost anywhere in the world has made being "off the grid" almost impossible. Which means that patients and health care providers are almost always able to communicate.
And, effective communication is the key to any health care message.
For years the internet has provided and almost encyclopedic reference for any illness, ailment, treatment, or medication. It is a rare patient that comes into my office that hasn't Googled their problem first.
Our office has free WiFi for patients, so even in the exam room patients can look up our recommendations and interact about conflicting discussions on the internet.
With the advent of online images, patients often compare tumors and rashes with jpegs they find on Flickr. This is their first opinion.
I am their second.
But what we see now going in the world is much deeper. And it offers the opportunity for a revolution in how we interact and disseminate health care information.
And ultimately care for patients.
Though smart phones and iPads, with WiFi and 3G, people can now be connected virtually anywhere in the world. It has made being "off the grid" a dream weekend away for many techno-nerds.
This technology is fascinating in its ability to behave almost like a living creature.
The word "viral" has always been used to describe how messages and content can spread so quickly around the globe. We've all seen those videos that reach a million or so downloads days after they are posted.
Viruses though by nature are not truly "living and breathing." They are merely protein products that rely on transmission from one host to another.
Certainly they can morph and evolve, becoming resistant to treatments and more easily spread, but they never replicate alone and they eventually die with their host.
I would argue that our social media revolution is more than viral. It is becoming living and breathing.
It is becoming alive.
With 500 million or so folks on Facebook, new groups and pages are made every second.
Instantaneous social networks can be created on autism, HIV, depression, and on and on.
Testimonials, treatments, and even tears can be shed together over a continuous interactive stream of discussion.
And it takes on a life of its own.
Never was this more clear than in Egypt. Once the message commenced and the social debate was started, the government shut down the internet, wireless phones, cable television, and even the power to some satellite relay stations.
Yet the revolution continued. It was spread via rumor and from person to person.
Even to people who never participated in Facebook, Twitter, or any internet discussion.
So will we see this in health care communications? I think we will. Is it too far fetched to believe that patients will move beyond just Googling a treatment suggestion in an exam room, to rather posting the idea on Facebook and immediately being able to discuss the concept with friends and family for feedback and suggestions?
Physicians already post diagnostic dilemmas sans personal information on the internet for assistance. So as treatments and plans are discussed will the confluence of information become the new "standard of care" against which we are all measured.
That would mean that the "standard" will be constantly evolving and changing as millions of patients and physicians provide continuous feedback and input.
And will this impact spread beyond the electronic world to effect patients and physicians who have steadfastly refused to participate in social media?
There are certainly dangers involved here. Aside from the privacy concerns, it is clear that without physicians and other health care providers being involved in the process that this standard could evolve into bad medicine and harm for patients.
Imagine if you will that a viral video on antiperspirants causing Alzheimer's creates a national outrage against personal hygiene, Congressional inquiry, and a ban on your favorite roll-on.
Funny? Just Google "phthalates" and "small penis." I think you can see how science and medicine can be influenced by social media. Sometimes with junk science.
So, the take home message here? Social media communication is here, and it will continue to grow and influence how we treat and take care of patients.
It will become alive and self perpetuating regardless if you participate or not.
It's essential that all the parties embrace and participate in the technology. We should welcome patients to examine their care on the internet, and we should encourage physicians to become involved in internet based discussions, groups, blogs, Facebook, and Twitter.
There is an evolution in the doctor-patient relationship and it will revolve around social media interactions.
And it's not a bad thing.
I guess if you are reading this blog you are already participating in social media to some extent. So will these words become viral?
Self interestingly I hope so.
- Posted using BlogPress from my iPad
First in Egypt, and now in Libya, millions of people are hearing about democracy and demanding change via smart phones and iPads over the internet.
What started as merely a march toppled a world leader.
So can social media create these same kind of changes in health care?
Today the ability to stay connected almost anywhere in the world has made being "off the grid" almost impossible. Which means that patients and health care providers are almost always able to communicate.
And, effective communication is the key to any health care message.
For years the internet has provided and almost encyclopedic reference for any illness, ailment, treatment, or medication. It is a rare patient that comes into my office that hasn't Googled their problem first.
Our office has free WiFi for patients, so even in the exam room patients can look up our recommendations and interact about conflicting discussions on the internet.
With the advent of online images, patients often compare tumors and rashes with jpegs they find on Flickr. This is their first opinion.
I am their second.
But what we see now going in the world is much deeper. And it offers the opportunity for a revolution in how we interact and disseminate health care information.
And ultimately care for patients.
Though smart phones and iPads, with WiFi and 3G, people can now be connected virtually anywhere in the world. It has made being "off the grid" a dream weekend away for many techno-nerds.
This technology is fascinating in its ability to behave almost like a living creature.
The word "viral" has always been used to describe how messages and content can spread so quickly around the globe. We've all seen those videos that reach a million or so downloads days after they are posted.
Viruses though by nature are not truly "living and breathing." They are merely protein products that rely on transmission from one host to another.
Certainly they can morph and evolve, becoming resistant to treatments and more easily spread, but they never replicate alone and they eventually die with their host.
I would argue that our social media revolution is more than viral. It is becoming living and breathing.
It is becoming alive.
With 500 million or so folks on Facebook, new groups and pages are made every second.
Instantaneous social networks can be created on autism, HIV, depression, and on and on.
Testimonials, treatments, and even tears can be shed together over a continuous interactive stream of discussion.
And it takes on a life of its own.
Never was this more clear than in Egypt. Once the message commenced and the social debate was started, the government shut down the internet, wireless phones, cable television, and even the power to some satellite relay stations.
Yet the revolution continued. It was spread via rumor and from person to person.
Even to people who never participated in Facebook, Twitter, or any internet discussion.
So will we see this in health care communications? I think we will. Is it too far fetched to believe that patients will move beyond just Googling a treatment suggestion in an exam room, to rather posting the idea on Facebook and immediately being able to discuss the concept with friends and family for feedback and suggestions?
Physicians already post diagnostic dilemmas sans personal information on the internet for assistance. So as treatments and plans are discussed will the confluence of information become the new "standard of care" against which we are all measured.
That would mean that the "standard" will be constantly evolving and changing as millions of patients and physicians provide continuous feedback and input.
And will this impact spread beyond the electronic world to effect patients and physicians who have steadfastly refused to participate in social media?
There are certainly dangers involved here. Aside from the privacy concerns, it is clear that without physicians and other health care providers being involved in the process that this standard could evolve into bad medicine and harm for patients.
Imagine if you will that a viral video on antiperspirants causing Alzheimer's creates a national outrage against personal hygiene, Congressional inquiry, and a ban on your favorite roll-on.
Funny? Just Google "phthalates" and "small penis." I think you can see how science and medicine can be influenced by social media. Sometimes with junk science.
So, the take home message here? Social media communication is here, and it will continue to grow and influence how we treat and take care of patients.
It will become alive and self perpetuating regardless if you participate or not.
It's essential that all the parties embrace and participate in the technology. We should welcome patients to examine their care on the internet, and we should encourage physicians to become involved in internet based discussions, groups, blogs, Facebook, and Twitter.
There is an evolution in the doctor-patient relationship and it will revolve around social media interactions.
And it's not a bad thing.
I guess if you are reading this blog you are already participating in social media to some extent. So will these words become viral?
Self interestingly I hope so.
- Posted using BlogPress from my iPad
Location:Dallas, Texas
Monday, February 21, 2011
Your private health information: Could it end up on YouTube?
Ok, imagine this.
You take a video of your little girl's soccer practice with your iPhone. Within moments it's posted on YouTube for the grandparents to see.
Minutes later search engines called spiders begin to crawl across the data set of images on your upload. Face recognition technology identifies a face on the video and, with some assistance from the geo-tagging of the built in GPS metadata that accompanied the upload, gets a general location of where the video was made.
It determines that your child has other photos posted on Flickr and also a photo in the local newspaper. Now it associates a name with the face. The name might be associated with a Facebook account.
Maybe there's an article that mentions a parent. The data discovery evolution continues continually attributing identifying information. The parent's information is exhaustive, but most importantly it contains an address.
From a face on a cell phone video, a sexual predator might discover the home and contact information for your child.
All searchable by keyword: soccer, girl, Facebook, my home town.
Scary.
Its easy to see the danger the internet can pose to children. We all know that. From Net Nanny to Web Watcher there are software and web packages that purport to protect our children.
They are good. But not perfect.
Health information interconnectivity is considered the holy grail of disease management.
In fact, most experts, including me, feel that without a robust means of health care providers sharing information we can never achieve the cost and quality metrics required for optimal health care delivery.
Especially as we enter the world of the ACO - accountable care organizations - where multiple providers may very well be paid to manage the health care of an individual patient, it will be essential to share information.
Cost savings will be dependent on reducing duplicated tests, encouraging patients to fill needed prescriptions for their diabetes or hypertension, or reminding and scheduling patients for preventative health measures like mammograms or a colonoscopy.
And patients will like it.
Can you imagine a doctor visit for an elderly patient where medicines are continually updated including whether they were even filled at the pharmacy?
We have that now in our office and many physicians subscribe to pharmacy data information that can help us know what medications patients are using.
In addition many offices and emergency rooms have access to claims data for some insured patients.
What does this tell you? Well, for one thing, it can report what you have filed on your health insurance as a recent claim including diagnosis codes for illnesses, visits to other emergency rooms or health providers, and procedures you may have had.
It certainly isn't perfect - the coding has to be right and it's stale (often not being updated for months) - but it provides a snapshot of the health care services that you received which in a pinch can provide a physician with some idea of your medical background.
Some insurers will also report medical allergies to round out the picture.
But the problem here is that all the information is fragmented. There are multiple sources, many that are not up-to-date or recent, and they are on many different databases.
The word thrown out a lot by governments and policy gurus is "data warehousing." This would be a central repository of all the available information that could be accessed securely and updated.
The benefits could be great: better managed health care for individuals and populations. Maybe less visits to the emergency rooms for diabetics, fewer readmissions to the hospital for patients with congestive heart failure, and less unnecessary tests for patients with chronic diseases.
The concept of disease case management might be able to lower cost and improve quality. A value statement that would be hard for anyone to argue with.
But are our privacy rules robust enough to protect our patients?
That's really the question.
So imagine these scenarios.
A school district during a new hire review of a teacher discover that she's taken antidepressants in the past. Would this be a good employee to hire?
A drug company does a database query for men with erectile dysfunction as a diagnosis code and who have been prescribed Viagra. They are sent emails and junk mail advertising a new little blue pill.
Your company hires a consultant to lower health insurance costs for your employees. They sell a product that searches the web and ranks future applicants on past health care costs and usage and provides a score. With a high score an applicant doesn't get an interview.
You file a disability claim on your short term disability plan. Your insurance company, by finding your face on a YouTube video and attributing a name, sees that you can play on a YMCA flag football team. See the problem here?
You could write hundreds of these scenarios. Does it mean that we have to shut down interconnectivity and data sharing of sensitive health information?
No. We can't afford too.
We must continue to move the ball forward to achieve quality and cost improvement.
We have no other option.
But it does raise the concern that as we get more and more data on the web, and more and more sophisticated in our processing power, there will be big problems with patient's privacy.
The best thing that could happen would be a systematic process -- where everyone works together -- to create a unified secure database with strong patient protection rules, including who can access the data and how it can be used.
For now we are left with a fragmented system where companies and governments are creating their own plan and their own data warehouses. All of these will have their own rules, security, data, and problems.
So am I scared of posting something on Facebook?
Absolutely not.
Do I think someday someone will be posting the status of my high blood pressure?
Absolutely.
- Posted using BlogPress from my iPad
You take a video of your little girl's soccer practice with your iPhone. Within moments it's posted on YouTube for the grandparents to see.
Minutes later search engines called spiders begin to crawl across the data set of images on your upload. Face recognition technology identifies a face on the video and, with some assistance from the geo-tagging of the built in GPS metadata that accompanied the upload, gets a general location of where the video was made.
It determines that your child has other photos posted on Flickr and also a photo in the local newspaper. Now it associates a name with the face. The name might be associated with a Facebook account.
Maybe there's an article that mentions a parent. The data discovery evolution continues continually attributing identifying information. The parent's information is exhaustive, but most importantly it contains an address.
From a face on a cell phone video, a sexual predator might discover the home and contact information for your child.
All searchable by keyword: soccer, girl, Facebook, my home town.
Scary.
Its easy to see the danger the internet can pose to children. We all know that. From Net Nanny to Web Watcher there are software and web packages that purport to protect our children.
They are good. But not perfect.
Health information interconnectivity is considered the holy grail of disease management.
In fact, most experts, including me, feel that without a robust means of health care providers sharing information we can never achieve the cost and quality metrics required for optimal health care delivery.
Especially as we enter the world of the ACO - accountable care organizations - where multiple providers may very well be paid to manage the health care of an individual patient, it will be essential to share information.
Cost savings will be dependent on reducing duplicated tests, encouraging patients to fill needed prescriptions for their diabetes or hypertension, or reminding and scheduling patients for preventative health measures like mammograms or a colonoscopy.
And patients will like it.
Can you imagine a doctor visit for an elderly patient where medicines are continually updated including whether they were even filled at the pharmacy?
We have that now in our office and many physicians subscribe to pharmacy data information that can help us know what medications patients are using.
In addition many offices and emergency rooms have access to claims data for some insured patients.
What does this tell you? Well, for one thing, it can report what you have filed on your health insurance as a recent claim including diagnosis codes for illnesses, visits to other emergency rooms or health providers, and procedures you may have had.
It certainly isn't perfect - the coding has to be right and it's stale (often not being updated for months) - but it provides a snapshot of the health care services that you received which in a pinch can provide a physician with some idea of your medical background.
Some insurers will also report medical allergies to round out the picture.
But the problem here is that all the information is fragmented. There are multiple sources, many that are not up-to-date or recent, and they are on many different databases.
The word thrown out a lot by governments and policy gurus is "data warehousing." This would be a central repository of all the available information that could be accessed securely and updated.
The benefits could be great: better managed health care for individuals and populations. Maybe less visits to the emergency rooms for diabetics, fewer readmissions to the hospital for patients with congestive heart failure, and less unnecessary tests for patients with chronic diseases.
The concept of disease case management might be able to lower cost and improve quality. A value statement that would be hard for anyone to argue with.
But are our privacy rules robust enough to protect our patients?
That's really the question.
So imagine these scenarios.
A school district during a new hire review of a teacher discover that she's taken antidepressants in the past. Would this be a good employee to hire?
A drug company does a database query for men with erectile dysfunction as a diagnosis code and who have been prescribed Viagra. They are sent emails and junk mail advertising a new little blue pill.
Your company hires a consultant to lower health insurance costs for your employees. They sell a product that searches the web and ranks future applicants on past health care costs and usage and provides a score. With a high score an applicant doesn't get an interview.
You file a disability claim on your short term disability plan. Your insurance company, by finding your face on a YouTube video and attributing a name, sees that you can play on a YMCA flag football team. See the problem here?
You could write hundreds of these scenarios. Does it mean that we have to shut down interconnectivity and data sharing of sensitive health information?
No. We can't afford too.
We must continue to move the ball forward to achieve quality and cost improvement.
We have no other option.
But it does raise the concern that as we get more and more data on the web, and more and more sophisticated in our processing power, there will be big problems with patient's privacy.
The best thing that could happen would be a systematic process -- where everyone works together -- to create a unified secure database with strong patient protection rules, including who can access the data and how it can be used.
For now we are left with a fragmented system where companies and governments are creating their own plan and their own data warehouses. All of these will have their own rules, security, data, and problems.
So am I scared of posting something on Facebook?
Absolutely not.
Do I think someday someone will be posting the status of my high blood pressure?
Absolutely.
- Posted using BlogPress from my iPad
Location:Dallas, Texas
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