I had dinner with an old friend last night, as well has her husband, and some of my family. I hadn't seen her in a few years just because both of our lives have taken us in different directions.
In talking, she shared that she had gone through a second breast cancer diagnosis last summer. And she had decided not to tell everyone about it. She told some people but not many more about her diagnosis, decision process, surgery and treatment. Why? Because she didn't want to and she decided there really wasn't a need for it. So she didn't.
I completely agreed with her decision and fully support it. Why? Because its what she was comfortable with. With any medical diagnosis, it is completely the patient's choice on how to handle it. (I mean unless there is an issue of lack of mental capacity.)
Seriously, the absolute worst thing that can happen to a patient if other people decide to share their diagnosis publicly. Imagine that you get a diagnosis and it ends up as the front page of your local newspaper? (This must happen to celebrities with the National Enquirer, and similar publications, all the time.) Or, you go to a theater and have the emcee start with a spotlight on you and the announcement, 'let's welcome Caroline and her newest cancer diagnosis'. That would really suck.
This is where HIPAA laws are important. It doesn't matter if you are the patient's friend or family member, its not your news to share so shut up! HIPAA laws should also apply to friends and family.
Showing posts with label privacy. Show all posts
Showing posts with label privacy. Show all posts
Monday, March 7, 2016
Tuesday, November 24, 2015
Keep your information to yourself
Every time you sign up for another store's shopping program, where you are enticed by the discounts and special offers, you are actually giving away your information. I don't consider it as much of a problem at a clothing store or the grocery, but when its the pharmacy, that becomes another story.
CVS, Walgreens, and RiteAid offer their rewards programs and they entice you to use the card because you get special prices on products and other financial gains. When you pay for your prescriptions along with shampoo and bandaids or provide personal data points such as body weight, blood sugar, etc, it becomes another story.
"Walgreens this month launched a new smartphone app that customers can sync up wirelessly with their blood glucose and blood pressure monitors so they can feed their personal health information directly into the chain’s data system in exchange for discounts.
At CVS, you can get $5 back for every 10 prescription refills — if you waive your right to health care privacy protected under the federal health law known as HIPAA. And Rite Aid is experimenting with a service that other retailers are using to collect tons of data: special lockers that you can use to charge your cell phone for free, if you’ll give up your phone number, insurance costs, and shopping preferences."
The key words in there are "if you waive your right to health care privacy protected under the federal health law known as HIPAA". I bet you didn't even realize that you waived your HIPAA protection.
Seriously? I had no idea I was waiving my HIPAA right to privacy. Until I read this article I did not know that was going on.
"When asked how Walgreens was using all that health data, company spokeswoman Mailee Garcia said the company “does not sell personally identifiable information to third parties,” but may sell de-identified information."
Garcia said Walgreens is not currently using health data to market to the customers who provide it. But the app’s privacy policy explicitly states that Walgreens may use customer data to personalize advertising. The store can also combine data entered into the health app with personal information collected by other companies to create a more robust profile of individual customers.
The policy also gives Walgreens the right to change its privacy terms at any time and says customer data will be sold as an asset if Walgreens is acquired by another company."
So now that I know all this, I will not be swiping my card when I pay for prescriptions. I will pay for prescriptions at the pharmacy without my card and then pay for other items to get the discounts with my card. Seriously its not worth my privacy about prescriptions. If it wasn't the way to get the sale prices (and I am secretly very cheap and never pay retail unless I absolutely have to), I would ditch my card all together.
CVS, Walgreens, and RiteAid offer their rewards programs and they entice you to use the card because you get special prices on products and other financial gains. When you pay for your prescriptions along with shampoo and bandaids or provide personal data points such as body weight, blood sugar, etc, it becomes another story.
"Walgreens this month launched a new smartphone app that customers can sync up wirelessly with their blood glucose and blood pressure monitors so they can feed their personal health information directly into the chain’s data system in exchange for discounts.
At CVS, you can get $5 back for every 10 prescription refills — if you waive your right to health care privacy protected under the federal health law known as HIPAA. And Rite Aid is experimenting with a service that other retailers are using to collect tons of data: special lockers that you can use to charge your cell phone for free, if you’ll give up your phone number, insurance costs, and shopping preferences."
The key words in there are "if you waive your right to health care privacy protected under the federal health law known as HIPAA". I bet you didn't even realize that you waived your HIPAA protection.
Seriously? I had no idea I was waiving my HIPAA right to privacy. Until I read this article I did not know that was going on.
"When asked how Walgreens was using all that health data, company spokeswoman Mailee Garcia said the company “does not sell personally identifiable information to third parties,” but may sell de-identified information."
Garcia said Walgreens is not currently using health data to market to the customers who provide it. But the app’s privacy policy explicitly states that Walgreens may use customer data to personalize advertising. The store can also combine data entered into the health app with personal information collected by other companies to create a more robust profile of individual customers.
The policy also gives Walgreens the right to change its privacy terms at any time and says customer data will be sold as an asset if Walgreens is acquired by another company."
So now that I know all this, I will not be swiping my card when I pay for prescriptions. I will pay for prescriptions at the pharmacy without my card and then pay for other items to get the discounts with my card. Seriously its not worth my privacy about prescriptions. If it wasn't the way to get the sale prices (and I am secretly very cheap and never pay retail unless I absolutely have to), I would ditch my card all together.
Wednesday, September 30, 2015
The big reveal
I have worked at my job for almost 6.5 years and am leaving in five weeks. Well I will work remotely one day a week and come in once a month until my replacement is found. Which I assume will take until spring.
I have made friends at work as I have been there so long. They make fun of my health regularly. And they only know half of it. Yesterday's joke was that I have more ailments than all the patients on the first floor of the local hospital combined. We laugh about it. They wonder how I can laugh about it and I say I have to laugh about it because I really do not have any other choices.
But they really do not know all about my health. They know I have a bad back, fibromyalgia, and rheumatoid arthritis. They do not know about cancer and all the rest. I have decided what I will do when I am done working there is I will give two of my co-workers a link to my blog so they can keep in touch and follow along with the rest of the disasters in my health (unless I miraculously get cured).
In the past, I have never shared my medical crap with my co-workers. I have always felt it doesn't belong in the workplace and I might some day want a reference for another job. At this point, I am retiring and hope to apply for disability social security. I don't plan on needing another job reference because I don't think I can continue to work at all.
So finally I can reveal my medical history to anyone I want to with out fearing any impact on my professional life. I mean who wants to hire someone as unhealthy as me?
I have made friends at work as I have been there so long. They make fun of my health regularly. And they only know half of it. Yesterday's joke was that I have more ailments than all the patients on the first floor of the local hospital combined. We laugh about it. They wonder how I can laugh about it and I say I have to laugh about it because I really do not have any other choices.
But they really do not know all about my health. They know I have a bad back, fibromyalgia, and rheumatoid arthritis. They do not know about cancer and all the rest. I have decided what I will do when I am done working there is I will give two of my co-workers a link to my blog so they can keep in touch and follow along with the rest of the disasters in my health (unless I miraculously get cured).
In the past, I have never shared my medical crap with my co-workers. I have always felt it doesn't belong in the workplace and I might some day want a reference for another job. At this point, I am retiring and hope to apply for disability social security. I don't plan on needing another job reference because I don't think I can continue to work at all.
So finally I can reveal my medical history to anyone I want to with out fearing any impact on my professional life. I mean who wants to hire someone as unhealthy as me?
Monday, September 21, 2015
Keeping silent on health issues
I find it very sad when people feel forced to keep their illnesses private. As you may have heard, Jackie Collins, the author, died this weekend of breast cancer. Apparently she was diagnosed six and one half years ago with stage IV breast cancer and only told her daughters.
Many people do not tell others about their ailments for a variety of reasons. Some may want to keep their health private but others I think feel forced to keep their health private. I can understand this at some levels. Why open yourself up for pity or stupid platitudes that we all want to avoid?
But then I think there are people who keep their health issues quiet because of potential bias from employers, friends, and family. The stupid 'they got *** so they are going to die' mentality. They are ready to ready to plan your funeral and split up your belongings immediately.
A woman who I worked with told me when she hears about someone's cancer diagnosis, she is ready to write them off because cancer will get them soon. This is just so sad. Others keep their health silent because they do not want to damage their career. Managers don't want to hire people who might drop dead on them, or require lots of health care and time off.
Our culture tells us those with health issues must be treated differently. When I go to the grocery store with a wrist splint on, the baggers always put two items in each bag so to 'accommodate' my perceived health. These same baggers fill the bags up when I don't have a splint on. Yes they are being polite but overly accommodating. I have no more desire to deal with twenty bags of two items each than two bags of twenty items each. But some kind of balance in the middle would be good for all. Or you could ask how heavy I want the bags to be. That would be an appreciated accommodation.
Too many people make assumptions about other's well being. Perhaps if they asked instead of assumed we would all be happier. And no cancer is not going to kill us tomorrow so stop treating us as if we were made of glass.Treat us normally. Thank you.
Many people do not tell others about their ailments for a variety of reasons. Some may want to keep their health private but others I think feel forced to keep their health private. I can understand this at some levels. Why open yourself up for pity or stupid platitudes that we all want to avoid?
But then I think there are people who keep their health issues quiet because of potential bias from employers, friends, and family. The stupid 'they got *** so they are going to die' mentality. They are ready to ready to plan your funeral and split up your belongings immediately.
A woman who I worked with told me when she hears about someone's cancer diagnosis, she is ready to write them off because cancer will get them soon. This is just so sad. Others keep their health silent because they do not want to damage their career. Managers don't want to hire people who might drop dead on them, or require lots of health care and time off.
Our culture tells us those with health issues must be treated differently. When I go to the grocery store with a wrist splint on, the baggers always put two items in each bag so to 'accommodate' my perceived health. These same baggers fill the bags up when I don't have a splint on. Yes they are being polite but overly accommodating. I have no more desire to deal with twenty bags of two items each than two bags of twenty items each. But some kind of balance in the middle would be good for all. Or you could ask how heavy I want the bags to be. That would be an appreciated accommodation.
Too many people make assumptions about other's well being. Perhaps if they asked instead of assumed we would all be happier. And no cancer is not going to kill us tomorrow so stop treating us as if we were made of glass.Treat us normally. Thank you.
Sunday, December 1, 2013
Telling your story
In recent months I have alluded to friends and family with health issues. I haven't provided details as it is not my story to tell. If they wanted me to share their story I feel they would tell me. But as this is my blog and not their friendship circle I doubt that would happen.
You are probably also aware that I don't always tell my medical (mis)adventures until I am ready. I have many reasons for this:
Privacy is something that can't be restored once broken. You need to allow people the option for privacy.
You are probably also aware that I don't always tell my medical (mis)adventures until I am ready. I have many reasons for this:
- Sometimes minor medical issues become overblown because of my medical history. Its one thing if my doctors say to me 'with your medical history we have to be sure' and send other me off for another series of pokings and prodings. But its another thing if I have friends and family call me up unendingly over little things that are nothings. It drives me crazy.
- Sometimes minor medical issues become much bigger ones (as a result of the additional pokings and prodings) that I need time to digest, figure out a treatment plan, and how we are going to handle it.
- If I wrote about every twinge and pain, I would have everyone bored to death in hours. This is why my husband accuses me of whininess now and then
Privacy is something that can't be restored once broken. You need to allow people the option for privacy.
Wednesday, September 4, 2013
Privacy and support
With a cancer, or other 'icky', diagnosis, life has significant ups and downs. Sometimes people want support and sometimes they want privacy. It depends on lots of things - patient and family member's personality, type of diagnosis, current state on the medical roller coaster, among other issues. So the outsider is left to figure out when to intrude and when not to.
I have a friend who is coping with her husband's Stage IV cancer diagnosis and on-going treatment. It is hard to get together with her these days as she can't tell day by day how he will be doing and if she will be comfortable leaving him. We communicate by email and try to set up times to get together - which sometimes it takes months to meet.
Another friend has a long term friendship with another couple who have suffered a horrible family tragedy last year and now the wife is dealing with metastases in her Stage IV cancer diagnosis. They are normally a very private couple and usually keep their personal issues quiet. The husband sent my friend an email about his wife's disease progression.
My thought is that this is a cry for help and I think my friend should call them up and offer to bring lunch on Saturday or something so they can get together. If they are opening up at this horrible time in their life, it is a request for support that they know my friend can provide through her own experiences and their long term friendship.
My friend, on the other hand, isn't so sure and thinks they would not want the intrusion. She knows them and I don't so perhaps she is correct here. But it is very hard to tell in these situations
When is it time to intrude and when is it time to honor their privacy. This goes beyond the issue of hospital visits that I blogged about the other day.
Many patients with icky medical diagnosis set up ways to control communication so they are not overwhelmed - whether a blog (like me), a web page, Facebook page, Twitter feed, or email blasts. It can be very difficult to control the communication flow. How to balance the latest medical information, need for privacy, and over anxious friends and family members is a huge problem for many patients.
The last thing many patients need is daily phone calls from the same people asking for the latest updates - what did the doctor say, what did your scan show, are you worried, how are your children coping - have you told them yet, and a slew of other questions that pressure the patient to share when they may not be ready to do so. And if there are repeated requests over and over the patient's stress mounts at an already stressful time.
A patient's right to privacy must be respected but sometimes they do need some support. The tricky part is figuring out when to intrude.
I have a friend who is coping with her husband's Stage IV cancer diagnosis and on-going treatment. It is hard to get together with her these days as she can't tell day by day how he will be doing and if she will be comfortable leaving him. We communicate by email and try to set up times to get together - which sometimes it takes months to meet.
Another friend has a long term friendship with another couple who have suffered a horrible family tragedy last year and now the wife is dealing with metastases in her Stage IV cancer diagnosis. They are normally a very private couple and usually keep their personal issues quiet. The husband sent my friend an email about his wife's disease progression.
My thought is that this is a cry for help and I think my friend should call them up and offer to bring lunch on Saturday or something so they can get together. If they are opening up at this horrible time in their life, it is a request for support that they know my friend can provide through her own experiences and their long term friendship.
My friend, on the other hand, isn't so sure and thinks they would not want the intrusion. She knows them and I don't so perhaps she is correct here. But it is very hard to tell in these situations
When is it time to intrude and when is it time to honor their privacy. This goes beyond the issue of hospital visits that I blogged about the other day.
Many patients with icky medical diagnosis set up ways to control communication so they are not overwhelmed - whether a blog (like me), a web page, Facebook page, Twitter feed, or email blasts. It can be very difficult to control the communication flow. How to balance the latest medical information, need for privacy, and over anxious friends and family members is a huge problem for many patients.
The last thing many patients need is daily phone calls from the same people asking for the latest updates - what did the doctor say, what did your scan show, are you worried, how are your children coping - have you told them yet, and a slew of other questions that pressure the patient to share when they may not be ready to do so. And if there are repeated requests over and over the patient's stress mounts at an already stressful time.
A patient's right to privacy must be respected but sometimes they do need some support. The tricky part is figuring out when to intrude.
Monday, July 29, 2013
Privacy
Somehow a change has happened. All of a sudden, I have many fewer doctor appointments. I saw my rheumatologist a couple of weeks ago. I see my therapist in mid August and then nothing until October when I see my rheumatologist and dermatologist.
How did that happen? When I get my appointment list from the hospital, it goes through next July and has an empty space on it. It maxes out at 10 appointments so I have less than ten scheduled. I do know a couple are missing.
My endocrinologist and my surgeon follow ups should happen in January and May respectively are not yet on the list. For some reason, those departments don't schedule until less than three months out. I also know I need to schedule a follow up with my back pain doctor for late fall sometime as well. And I have to go in for blood work every two months as well. I have dentist appointments too but they aren't the same.
I do know a few of my doctors have switched me to annual follow ups instead of six months. That helps. I don't know what happened to all my other appointments. I really don't mind NOT going to the doctor. In fact I will enjoy it.
One aspect I will really enjoy is not having my body examined again and again. I do not need to be poked and prodded, have my vitals and weight checked again and again. I am fine.
I do feel like I am regaining a sense of privacy in hot being examined so extensively and frequently. Its my body and I am entitled to some privacy about it. I have missed that.
How did that happen? When I get my appointment list from the hospital, it goes through next July and has an empty space on it. It maxes out at 10 appointments so I have less than ten scheduled. I do know a couple are missing.
My endocrinologist and my surgeon follow ups should happen in January and May respectively are not yet on the list. For some reason, those departments don't schedule until less than three months out. I also know I need to schedule a follow up with my back pain doctor for late fall sometime as well. And I have to go in for blood work every two months as well. I have dentist appointments too but they aren't the same.
I do know a few of my doctors have switched me to annual follow ups instead of six months. That helps. I don't know what happened to all my other appointments. I really don't mind NOT going to the doctor. In fact I will enjoy it.
One aspect I will really enjoy is not having my body examined again and again. I do not need to be poked and prodded, have my vitals and weight checked again and again. I am fine.
I do feel like I am regaining a sense of privacy in hot being examined so extensively and frequently. Its my body and I am entitled to some privacy about it. I have missed that.
Tuesday, September 18, 2012
How would you answer the question?
Someone asked about this on one of the many cancer boards I am on recently, post cancer how do you answer the question: "Do you have any significant health issues?" Let us pretend this is not a doctor's office where we would launch into a twenty minute spiel that includes multiple surgeries, treatment protocols, on going side effects, latest tests and their results, current prognosis, medical facilities used, and current medication list. If someone really needs to know my medical history I need a sheet or two of lined paper, not two scrawny little lines to write in tiny print.
But what if you wanted to go bungee jumping, sky diving, or something which required a medical release? Do you say 'I had cancer and am mostly fine except for a touch of lymphedema'? (Note: my back would preclude me from any of these activities myself.) Or do you say nothing because you are no longer in treatment?
My personal feeling is that if my medical history is going to make a difference I might tell them about the majority of my medical adventures. Is it important for anyone to know I had my gall bladder out four years ago? Only to my doctor or a surgeon looking to cut into other parts of me.
I will never use the word 'survivor' to describe myself except in the context of 'surviving millions of medical adventures'. But I could be persuaded to write 'I had cancer twice'. Then I get weird looks and lots of questions and people tend to tell me their medical history. And then we get to have a big discussion about health ailments.
So I guess I would be more inclined to keep my mouth shut about my medical history.
But what if you wanted to go bungee jumping, sky diving, or something which required a medical release? Do you say 'I had cancer and am mostly fine except for a touch of lymphedema'? (Note: my back would preclude me from any of these activities myself.) Or do you say nothing because you are no longer in treatment?
My personal feeling is that if my medical history is going to make a difference I might tell them about the majority of my medical adventures. Is it important for anyone to know I had my gall bladder out four years ago? Only to my doctor or a surgeon looking to cut into other parts of me.
I will never use the word 'survivor' to describe myself except in the context of 'surviving millions of medical adventures'. But I could be persuaded to write 'I had cancer twice'. Then I get weird looks and lots of questions and people tend to tell me their medical history. And then we get to have a big discussion about health ailments.
So I guess I would be more inclined to keep my mouth shut about my medical history.
Friday, July 27, 2012
Telling your story
I know I have blogged about this before. You are the only one who gets to tell your cancer story. It is your body and your life and the one thing you get to choose is to whom you tell your story and when. This is a big red flag for me.
Recently this became clear. One person was ready to make an announcement with the best of intentions about another person and included their cancer story in it. The person who it was about was not happy about this. They had been purposely keeping their cancer story private because they did not want their employer to know. So the story was rewritten with out the cancer story in it.
Another time one of my neighbors who I don't know very well - just because our paths don't cross - saw me outside and came rushing over and starting asked me if I was doing okay or not obviously referring to cancer. One of my other neighbors must have told them. I don't know what was said but obviously they thought I was dying or something.
No one can tell anyone's cancer (or other icky medical diagnosis) story but the person with the ailment gets the privilege of sharing or not. So everyone else just bite your tongue.
Recently this became clear. One person was ready to make an announcement with the best of intentions about another person and included their cancer story in it. The person who it was about was not happy about this. They had been purposely keeping their cancer story private because they did not want their employer to know. So the story was rewritten with out the cancer story in it.
Another time one of my neighbors who I don't know very well - just because our paths don't cross - saw me outside and came rushing over and starting asked me if I was doing okay or not obviously referring to cancer. One of my other neighbors must have told them. I don't know what was said but obviously they thought I was dying or something.
No one can tell anyone's cancer (or other icky medical diagnosis) story but the person with the ailment gets the privilege of sharing or not. So everyone else just bite your tongue.
Friday, January 20, 2012
She can talk about it on her own terms
Oh, the scandal! Paula Deen has had diabetes for three years and didn't tell all of us until this week! She should have told us immediately. And now she must change her cooking style and switch to raw veganism so that she will lose weight and control her diabetes and prevent an early death! We should have been told!
Who am I kidding? I completely support her decision not to go public until she was ready. In her own words she said I wanted to bring something to the table when I came forward.” She and her sons have started a foundation called Diabetes in a New Light and is now a spokesperson for Novo Nordisk which manufactures diabetes medications.
What else is she supposed to do? Is she supposed to change the world, create global peace, and find the cure for diabetes? Isn't this enough? I think she is doing a lot of good with the foundation and as a spokesperson.
When anyone gets a 'not so fun' medical diagnosis, they need time to digest it and get a treatment plan going. They also may need to adapt their life style and make additional changes - maybe changing employment or more. The last thing someone with a nasty medical diagnosis should be required to do is to announce it to the world until they are ready. She gets to talk about it on her own terms.
Who am I kidding? I completely support her decision not to go public until she was ready. In her own words she said I wanted to bring something to the table when I came forward.” She and her sons have started a foundation called Diabetes in a New Light and is now a spokesperson for Novo Nordisk which manufactures diabetes medications.
What else is she supposed to do? Is she supposed to change the world, create global peace, and find the cure for diabetes? Isn't this enough? I think she is doing a lot of good with the foundation and as a spokesperson.
When anyone gets a 'not so fun' medical diagnosis, they need time to digest it and get a treatment plan going. They also may need to adapt their life style and make additional changes - maybe changing employment or more. The last thing someone with a nasty medical diagnosis should be required to do is to announce it to the world until they are ready. She gets to talk about it on her own terms.
Sunday, May 1, 2011
Cancer news
Why is it when a celebrity gets cancer it becomes international news? But when a regular person gets cancer, people run away and hide? I mean the latest celebrity to get cancer is the man who was just recruited by the NFL, shouldn't he be allowed to cope with his diagnosis and treatment with a little privacy? The last thing a chemo patient wants is a camera following them around as they lose their hair and try to keep down their food.
The lack of sensitivity in the media is awful these days. Reporters are aggressive for stories and have to get the scoop. Stories get blown out of proportion and what is little news becomes big news. Media hype causes a lot of problems but that's not my topic.
My topic is cancer diagnosis and privacy. Well not just privacy but managing of privacy. A regular person gets cancer and has to cope. They tell who they want to at first and then all your friends and relatives know and people call and want to talk and you still are in 'cope' mode not in 'talk' mode. (That is all the friends and relatives who don't move to another planet so they can pretend the world is perfect and no one has a nasty disease.)
If some one is diagnosed with cancer, I wouldn't bring it up to them until they tell you. If you hear a friend has cancer through another friend, I would not rush to call them and talk to them about it unless the sick friend has told the other friend to please tell people. Its a time to give people space to cope and think things through.
The lack of sensitivity in the media is awful these days. Reporters are aggressive for stories and have to get the scoop. Stories get blown out of proportion and what is little news becomes big news. Media hype causes a lot of problems but that's not my topic.
My topic is cancer diagnosis and privacy. Well not just privacy but managing of privacy. A regular person gets cancer and has to cope. They tell who they want to at first and then all your friends and relatives know and people call and want to talk and you still are in 'cope' mode not in 'talk' mode. (That is all the friends and relatives who don't move to another planet so they can pretend the world is perfect and no one has a nasty disease.)
If some one is diagnosed with cancer, I wouldn't bring it up to them until they tell you. If you hear a friend has cancer through another friend, I would not rush to call them and talk to them about it unless the sick friend has told the other friend to please tell people. Its a time to give people space to cope and think things through.
Wednesday, April 20, 2011
Social networks and medical privacy
So you have a Facebook account, a Twitter account, a blog, and text and email everyone you know. You share things about your life, maybe not all, but probably more than you think. You complain about your life, tell everyone when you have a cold, a customer made you mad, your boss ticked you off, or your husband brought you flowers. You say happy birthday to your friends and commiserate over a job loss or death in the family.
But what if your doctor was on line as much as you and complained about patients or a work situation - which included you - as their patient.
This issue is now coming to the forefront for many people who use the internet both personally and professionally. The technical advice is to 'create separate personal and professional accounts' for everything. Well I have tried that and the lines are blurred. Everything is tied back to specific email addresses and what if you have an account in one place personally but need to use it professionally?
Hospitals are beginning to recognize this as an issue. I see it as a fairly significant issue myself. I expect my medical privacy to be preserved. I would not want my doctor discussing my medical issues on the open internet, nor would I want pictures of me posted by my doctor.
The free for all, no privacy, no rules of the wild west internet are in direct conflict with the guarded privacy found in medicine, banking, stock insider deals, and more areas. It will be interesting to see how this all unfolds in the coming years.
But what if your doctor was on line as much as you and complained about patients or a work situation - which included you - as their patient.
This issue is now coming to the forefront for many people who use the internet both personally and professionally. The technical advice is to 'create separate personal and professional accounts' for everything. Well I have tried that and the lines are blurred. Everything is tied back to specific email addresses and what if you have an account in one place personally but need to use it professionally?
Hospitals are beginning to recognize this as an issue. I see it as a fairly significant issue myself. I expect my medical privacy to be preserved. I would not want my doctor discussing my medical issues on the open internet, nor would I want pictures of me posted by my doctor.
The free for all, no privacy, no rules of the wild west internet are in direct conflict with the guarded privacy found in medicine, banking, stock insider deals, and more areas. It will be interesting to see how this all unfolds in the coming years.
Friday, December 3, 2010
Thoughts on chaperones
When I hear the word 'chaperone', I think of young ladies in the 19th century who were not allowed in the presence of a male who was not a relation without a chaperone. Or of a parent or teacher who chaperones a school dance. Or of an escort through a business office to make sure the visitors don't stray.
But what about medical chaperones? The kind who is in the room when a male doctor does an exam on a female patient. Do we need those? I don't know. If I am wide awake and able to speak up if I feel the doctor is inappropriate, I usually am comfortable without a chaperone in the room. I don't feel this as much of an issue. Also, usually if there is any kind of internal exam often there is someone else in the room to pass instruments, swabs, and other thingies.
I think I am more concerned when I am sedated and helpless and couldn't speak up. I think I assume that while I am unconscious in surgery, there are multiple people pretty much at all times and while I am in recovery, waking up, there are nurses near by and you are openly visible as they want to monitor you.
If I am lucky enough to be hospitalized, I keep my room door shut at all times. I hate it when people walk by and look into my room. Now does this mean I am taking a risk because someone in passing can't see in to make sure I am safe?
I think this isn't just a matter of patient safety but also of comfort level. I need my privacy to be respected. I prefer to be in private and am usually comfortable that way. But on the other hand, what about safety too? Where do you want to draw the line and what are your expectations? You decide.
But what about medical chaperones? The kind who is in the room when a male doctor does an exam on a female patient. Do we need those? I don't know. If I am wide awake and able to speak up if I feel the doctor is inappropriate, I usually am comfortable without a chaperone in the room. I don't feel this as much of an issue. Also, usually if there is any kind of internal exam often there is someone else in the room to pass instruments, swabs, and other thingies.
I think I am more concerned when I am sedated and helpless and couldn't speak up. I think I assume that while I am unconscious in surgery, there are multiple people pretty much at all times and while I am in recovery, waking up, there are nurses near by and you are openly visible as they want to monitor you.
If I am lucky enough to be hospitalized, I keep my room door shut at all times. I hate it when people walk by and look into my room. Now does this mean I am taking a risk because someone in passing can't see in to make sure I am safe?
I think this isn't just a matter of patient safety but also of comfort level. I need my privacy to be respected. I prefer to be in private and am usually comfortable that way. But on the other hand, what about safety too? Where do you want to draw the line and what are your expectations? You decide.
Wednesday, August 4, 2010
Its discrimination
As soon as you start treating people differently because of their health, age, skin color, language, eye color, height, weight, shoe size, pant size, food allergies, eating preferences, ability to use chopsticks or not, career aspirations, job, salary, or whatever, you create discrimination.
When you are first diagnosed with cancer, you believe everyone will know that you have cancer as it is tattooed on your forehead for the world to see. They see the word cancer and either:
a. Run away - because they might catch cancer cooties or they just don't know how to talk about this.
b. Tell you how you can be cured - they know because their neighbor's second cousin's hair stylist's dog groomers, great nephew had a completely different kind of cancer thirty years ago and it cured him.
c. Ignore it and pretend you have nothing wrong with you. Now there is an upside to this - they aren't treating you differently but they still expect you to go drinking and bar hopping until 3 am and call you a party pooper when you say you can't because you have to get up early for chemo and they frown on patients with massive hangovers.
d. They treat you just about the same but understand you may not feel up to snuff for everything you used to do. This is not treating them differently this is adapting to a change in their life.
In my professional opinion with 29 years (yes really) of experience in this is that answer d is correct. Don't really treat them any differently. The other answers are a combination of fear, stupidity, ignorance, and discrimination (which is really stupidity and ignorance and fear combined).
So now the NCAA wants to start requiring all student athletes to be tested for the sickle cell anemia trait. Why are they doing this? Because lawyers and insurance companies got involved after a student athlete died because of his sickle cell issues. (Now there is nothing wrong with lawyers and insurance companies, they do a lot of good in the world, but this is clearly another case of a CYA maneuver.)
First of all, the rate of sickle cell traits in African Americans is 8 times that of Caucasians. This would reinforce bias and prejudice for the wrong reasons. Can you say 'genetic discrimination'? Regardless of skin color, this is creating two classes of athletes.
Second, just because you have the sickle cell trait, doesn't mean you have health risks. Apparently you need two parents with sickle cell traits to create a child with real problems.
Third, if you have sickle cell issues you are supposed to (and I quote): 'to stay hydrated and know when to take breaks. It's about knowing your body.' And how is this any different than what an athlete or anyone exercising should be doing?
Finally, why can't the NCAA just do what the US military is doing since the 1970's by revamping the training protocol to eliminate the risk of heat-related illnesses and exhaustion for everyone. Why create another possible area for bias?
I feel my health history is on a need to know basis. If you don't need to know, I'm not telling. Same with sickle cell testing - what is it doing as a screening for college athletes other than creating bias and 'haves' and 'have-nots' categories?
Otherwise my day started off on a rosy note - can you say sunrise? We left our adventures in northern WI at 5:50 AM. I didn't sleep well last night due to back pain, etc. Now we are in southern MN - far away from where we started. I am going to productively work from my friend's condo while she has gone to her office. I am exhausted and can't spell (giving spell check a workout). I really do have work to do but the overwhelming urge to nap may take over...
When you are first diagnosed with cancer, you believe everyone will know that you have cancer as it is tattooed on your forehead for the world to see. They see the word cancer and either:
a. Run away - because they might catch cancer cooties or they just don't know how to talk about this.
b. Tell you how you can be cured - they know because their neighbor's second cousin's hair stylist's dog groomers, great nephew had a completely different kind of cancer thirty years ago and it cured him.
c. Ignore it and pretend you have nothing wrong with you. Now there is an upside to this - they aren't treating you differently but they still expect you to go drinking and bar hopping until 3 am and call you a party pooper when you say you can't because you have to get up early for chemo and they frown on patients with massive hangovers.
d. They treat you just about the same but understand you may not feel up to snuff for everything you used to do. This is not treating them differently this is adapting to a change in their life.
In my professional opinion with 29 years (yes really) of experience in this is that answer d is correct. Don't really treat them any differently. The other answers are a combination of fear, stupidity, ignorance, and discrimination (which is really stupidity and ignorance and fear combined).
So now the NCAA wants to start requiring all student athletes to be tested for the sickle cell anemia trait. Why are they doing this? Because lawyers and insurance companies got involved after a student athlete died because of his sickle cell issues. (Now there is nothing wrong with lawyers and insurance companies, they do a lot of good in the world, but this is clearly another case of a CYA maneuver.)
First of all, the rate of sickle cell traits in African Americans is 8 times that of Caucasians. This would reinforce bias and prejudice for the wrong reasons. Can you say 'genetic discrimination'? Regardless of skin color, this is creating two classes of athletes.
Second, just because you have the sickle cell trait, doesn't mean you have health risks. Apparently you need two parents with sickle cell traits to create a child with real problems.
Third, if you have sickle cell issues you are supposed to (and I quote): 'to stay hydrated and know when to take breaks. It's about knowing your body.' And how is this any different than what an athlete or anyone exercising should be doing?
Finally, why can't the NCAA just do what the US military is doing since the 1970's by revamping the training protocol to eliminate the risk of heat-related illnesses and exhaustion for everyone. Why create another possible area for bias?
I feel my health history is on a need to know basis. If you don't need to know, I'm not telling. Same with sickle cell testing - what is it doing as a screening for college athletes other than creating bias and 'haves' and 'have-nots' categories?
Otherwise my day started off on a rosy note - can you say sunrise? We left our adventures in northern WI at 5:50 AM. I didn't sleep well last night due to back pain, etc. Now we are in southern MN - far away from where we started. I am going to productively work from my friend's condo while she has gone to her office. I am exhausted and can't spell (giving spell check a workout). I really do have work to do but the overwhelming urge to nap may take over...
Saturday, July 10, 2010
Thoughts on blogging and news and privacy
I started blogging because I had a nasty medical diagnosis - breast cancer - but now I don't just blog about cancer, I blog about all my other medical ailments (and there are just a few), my interactions with the medical world (which are all too frequent), my opinions on just about anything I read, and what ever I feel like writing about. Its my blog and I can.
I find blogging to be therapeutic in that I can write about something and get it off my chest (so to speak). There is no English teacher who is going to tell me I can't write (a frequent experience in high school). Its just me and spell check,a spell check that often doesn't understand medical terms and leaves me a red squiggly line as a reminder that he thinks I am wrong.
Blogging also allows me to be in control, in some small way, of my medical issues. I am the one in control here and decide what I write about and when. Sometimes I am not ready to talk about things and still need to think about what the impact of the latest news really means. Or that the next step is something I need to digest some more.
Privacy on the internet is somewhat of an oxymoron. But I do what I feel comfortable with. If you know me, you know my whole name and email. If you don't know me you can leave a comment. Many of the comments I get are spam (so much for having a fan club) but I leave the majority up if only for the humor aspect. If you know me you can also find me on facebook (the internet's greatest time suck).
Enough on all that. Today is Saturday. It hasn't rained for a month. Today we were going to meet some friends at an outside festival and the weather forecast is for rain. Of course. But I will drag my husband out for a morning walk and stop at the pet store (which is conveniently 2 blocks from here) and get two cases of cat food. I do have some work I need to do today because I procrastinated this week. But now I need my coffee.
I find blogging to be therapeutic in that I can write about something and get it off my chest (so to speak). There is no English teacher who is going to tell me I can't write (a frequent experience in high school). Its just me and spell check,a spell check that often doesn't understand medical terms and leaves me a red squiggly line as a reminder that he thinks I am wrong.
Blogging also allows me to be in control, in some small way, of my medical issues. I am the one in control here and decide what I write about and when. Sometimes I am not ready to talk about things and still need to think about what the impact of the latest news really means. Or that the next step is something I need to digest some more.
Privacy on the internet is somewhat of an oxymoron. But I do what I feel comfortable with. If you know me, you know my whole name and email. If you don't know me you can leave a comment. Many of the comments I get are spam (so much for having a fan club) but I leave the majority up if only for the humor aspect. If you know me you can also find me on facebook (the internet's greatest time suck).
Enough on all that. Today is Saturday. It hasn't rained for a month. Today we were going to meet some friends at an outside festival and the weather forecast is for rain. Of course. But I will drag my husband out for a morning walk and stop at the pet store (which is conveniently 2 blocks from here) and get two cases of cat food. I do have some work I need to do today because I procrastinated this week. But now I need my coffee.
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