When you must cope with a medical problem or manage a chronic illness, you’ll find you have a variety of challenges and questions.
For clinical, medical questions, your most trusted resource should be your doctor.
But when it comes to everyday management of your illness or condition, then you may be able to learn much more from other patients with your same diagnosis.
The answers and resources provided by other patients or their caregivers can be invaluable. Have they ever experienced similar side effects to drugs? How do they cope with pain? Who is a good doctor for a second opinion? Have they found any effective complementary or alternative therapies? These aren’t medical questions – they are experience questions.
Where can you find patients with your same diagnosis? Support groups.
There are support and affinity groups for every diagnosis or set of symptoms you can imagine. From Alzheimer’s to hypertension, from Lyme Disease to depression – patients and caregivers are sharing information with other patients every day.
Some support groups are local. They may be sponsored by local hospitals, large physician practice groups or by associations that represent specific medical conditions or problems. Ask the nurse in your doctor’s office for information about these groups and find one that meets at a convenient time and place.
If you decide to participate with an online support group, you’ll want to do so safely. Remember, that even if they claim to be, other participants are probably not medical professionals. Be sure to verify with your doctor any medical information provided.
Conversely, don’t try to give medical advice to others. You aren’t a medical professional either!
Finally, take steps to protect your privacy. Stay as anonymous as possible. Don’t provide information that could identify you. Use a first name only, and provide general geographical information if location is necessary at all. Don’t use your personal email address publicly because you’ll open yourself up to spam.
You’ll be pleased at the many ways other patients and caregivers can help you, and you’ll feel empowered by sharing your own experiences, too.
One question I’m asked frequently is whether it’s safe to purchase prescription drugs on the Internet.
Whether you like the convenience or hope to save money by purchasing online, the short answer is “Sure! Go for it!” But that’s followed by some cautionary advice, too.
If you have prescription coverage through your insurer or Medicare, then consider purchasing your prescription drugs online from a pharmacy that works with your insurance. Most of the major pharmacies like Rite-Aid, CVS, or Walgreens have websites where you can, at least, refill a prescription.
Most larger payers also work with mail order pharmacies like Express Scripts, Caremark or Medco. Each of these companies offers a convenient way to fill or refill your prescriptions on their websites. Some even send refill reminders to your doctor.
Saving money is a big reason to shop for prescription drugs online. If you don’t have prescription drug coverage, or if you are at risk of falling into Medicare’s donut hole, you’ll want to keep your cost as low as possible.
There are several websites available to help you compare drug prices and it’s definitely worth your effort to do so. For example, the cost for Lipitor 20 mg finds a range of $85.70 to $284.16 for a 90-day supply. That can save you $1,200 per year! Find that list of cost comparison websites here: How to Compare Drug Prices Online.
The biggest cautions are safety-related. You’ll want to protect your identity, since you’ll need to use your credit card. You’ll also need confidence that the drugs you receive are the actual drugs you ordered and not watered down or counterfeit versions.
The best way to be sure you are purchasing drugs safely is to be sure the online pharmacy you choose has been reviewed by the National Association of Boards of Pharmacy. Once they review an Internet pharmacy, it is assigned to one of two lists: either its list of “rogue” pharmacies, those known to be unsafe, or “VIPPS” pharmacies, meaning Verified Internet Pharmacy Practice Sites – the safe sites.
Purchasing your prescription drugs online can be a time saver, a money saver, and is especially helpful for those who have trouble with transportation. As long as you make sure you’re purchasing from a bona fide safe pharmacy, then it’s a smart approach to purchasing your drugs.
I exchange thoughts with healthcare IT people on a daily basis over at Twitter. So many of them seem perplexed at why we patients look at putting our medical records on the internet with trepidation.
Then along comes this video from Elizabeth Cohen at CNN. In a matter of minutes, she was able to pull up one of her CNN colleague’s medical records, his kids’ records… She could see which doctors they’ve visited, what took place during those meetings…
HIPAA is supposed to protect us from others getting our medical records right?
We don’t want potential employers finding out we have to take meds to control blood pressure or cholesterol every day — it’s not their business!
And consider this scenario: you have no health insurance, or maybe you’ve just been laid off and you’ve lost your insurance. Now you need new insurance. Well guess what? Insurers are looking behind the scenes to find reasons to turn you down. Regardless of how easy it is for others to get your medical records, the Medical Information Bureau makes it easy for insurers anyway.
Here’s my opinion on this issue: I absolutely believe our health records need to be online, both to improve our health and to save money. Both are reason enough to do make medical records accessible digitally.
I do NOT believe patients should be putting their own health information online through Google or Microsoft Health Vault or any of the free applications out there, and I very much object to those large organizations (like the Mayo Clinic) which are getting in bed with these two privacy-sucking behemoths. Those “free” applications are not free. I’ve written about that extensively in the past.
Now the government is looking at ways to move all our records online, and they are ready to throw $20 billion into the project. I support that — with this caveat: part of that money must make sure that our records can’t get into the wrong hands — including Elizabeth Cohen’s (Elizabeth, you know I love ya!) — because while Elizabeth is only showing us the potentials, not everyone has our best interests or good motives for doing so.
By the way, Elizabeth takes time in the video to tell us how to protect our records. Take a look. It will serve you well.
A new post by my blog guest Anonymous, poses a question, “Informed consent is just a cruel joke, isn’t it?”
This gentleman, who underwent surgery, was given Versed as anesthesia, despite stating that he did not want to be given any drug that would render him unconscious. So, not only did he deny consent, he stated that he did not want to be put to sleep at all.
We don’t know too many of the details, and we have not been given the other side of this story.
But it does call patients rights into question. And our understanding of Informed Consent.
Take a read — see what you think — and if you have ideas for what could have been done differently? Please post your comments, too.
Wait! You say. Isn’t that what our new Obama-led government wants us to do? Electronic Medical Records are good for our health! They are good for our economy! They are good for our country!
Not so fast!
First — the distinction between those EHRs, electronic medical records that are kept by practitioners — doctors, hospitals, nursing homes. They use proprietary programs that may allow access to patients, but are not set up for patients to add their own information. These are the kinds of records being promoted by our new government, and I say — go for it. Great idea. They will save lives and grief.
But there is another kind of record known as a PHR, personal health record. There are a dozen ways to keep records, including on your own home computer or on a thumb drive, or even in a shoebox. And, they can be kept online for those who are willing to fill out tons of forms and scan and upload some of their information. Some programs exist that charge a monthly or annual fee. Not expensive, but enough that you can at least trust your information with them (as well as it can be trusted anywhere — another conversation for another day.)
But some of those big online health groups like Google, Microsoft, Revolution Health and others want YOU to put your OWN information online. and — lucky you! They’ll give you the space online for free!
You know there’s no such thing as a free lunch. And there’s no such thing as free space online for your health information. And while I’ve said that for years, and while many have dissed me for doing so — the proof is now published.
The problem is that these companies want to sell your information to the highest bidder. Maybe they can sell it to a pharmaceutical company or a drug store chain. Maybe they’ll sell it to the Medical Information Bureau that will tell its member-insurers what your medical problems are (so they can decide not to insure you.) Or maybe your employer wants to know whether to keep you on staff, or even hire you to begin with?
Believe me, despite what they claim they “want” to do for those unsuspecting people who put their health information online — their real goal — the goal they MUST have (by law because they are beholden to investors) — is to make money. They are not offering you that space out of the goodness of their hearts.
I’ve said it before. I’ll say it again. If you want your health and medical information to stay private, then STAY AWAY FROM THE FREE PERSONAL HEALTH RECORD applications. It can’t be any plainer than that.