September 18th, 2009 by Trisha Torrey
Update on this post: AdvoConnection is launched! Patients are being helped, and patient advocates are ready to help you. Learn more at: www.AdvoConnection.com.
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Hard at work we’ve been! And AdvoConnection, a dream of mine for several years, is getting ready to launch.
Since beginning my advocacy work almost five years ago, and being highly visible on the web, I hear from desperate patients on an almost daily basis:
- They cannot get an accurate diagnosis, know they need treatment, and need someone to help them find the doctors, or get the tests, that can help them.
- They are seeing too many specialists who aren’t coordinating their care. They need someone who will take a look at their reams of medical records to help them sort out their treatment.
- They are having trouble with their insurer, who isn’t paying as promised, or who is denying them care.
- They have received doctor or hospital bills that they can’t sort out or decipher. Or they believe they have been billed for services they did not receive. They’ve read that up to 80% of hospital bills are incorrect, and they want someone to help them negotiate with whomever has billed them.
- I hear frequently from adult children of elderly parents, perhaps living in a different location, who need assistance for their parents, either to help them find a nursing home, or for eldercare or home health care.
- The biggest heartbreakers are the parents who have run into brick walls trying to help their children. Or the left-behind person who lost a loved one to a medical error. They need to know who to turn to — an advocate? a lawyer? to get the support they need.
Now you can see why I wanted to develop AdvoConnection. It is a service for matching patients to the help they need in the form of patient advocates, patient navigators, billing assistance and other forms of medical system assistance that will help them navigate the waters of our dysfunctional health care system.
There are two aspects to this new site and service:
AdvoConnection for Patients – www. AdvoConnection.com – will launch October 1. Patients will be able to search for an advocate or navigator by location and service provided — at no cost to them. They will have the information they need to contact that advocate to inquire more about their services. It’s a directory type service that will help patients and caregivers find the help they need.
Any patient or caregiver who thinks s/he might need patient advocacy assistance can be added to the email list to be alerted when the site goes live (or, if you read this after October 1, 2009, go directly to the site itself.)
AdvoConnection for Advocates – http://members.AdvoConnection.com – provides advocates and navigators will the interface to be a part of the directory for patients described above. It also provides additional business services such as marketing assistance, and a forum for connecting with other advocates. By early 2010, it will also provide them with access to an ask-a-doctor service, and other services they may seek to help them grow their advocacy businesses.
Any patient advocate interested in participating with AdvoConnection may apply for membership through that site: http://members.AdvoConnection.com
February 20th, 2009 by Trisha Torrey
If you thought social networking was only for kids, Gen Web-ers or geeks, then think again.
Social networking has become a great source for finding people who can help you improve your health, or your medical care.
If you aren’t sure what I mean by social networking, then you’ll recognize it by other names you have heard, like FaceBook, mySpace or Twitter.
Last month I asked who is using these websites to learn more, and many of you voted in my poll. But now it occurs to me that for those of you who don’t, you may be missing out on some solid information that can move you forward in your quest to get better healthcare.
So here’s some background information on getting started with social networking.
And, as you may know, I am the patient empowerment guide at About.com — and learned recently that many of my About.com Health colleagues are using Twitter to help their readers, too. So I’ve put together a list of my About.com Health Twitter colleagues for you to check out.
Do you Twitter? Do you have a page at Facebook or any of the other social networking sites? If you’re willing to pitch into the conversation and share what you’ve learned, then please share your ideas – and your IDs, too.
January 31st, 2009 by Trisha Torrey
Here’s an update on my Every Patient’s Advocate activities
for the week of January 25 to 31:
See this icon? 
It means this link includes an opportunity for you to participate, beyond just a comment. However, please remember that your comments to any article or post are always welcome.
This icon 
indicates a piece that has attracted a lot of attention.
Blog Posts ………………………………..
Articles ………………………………..
Radio (Podcasts) ………………………………..
HealthLink on Air Guests — January 25:
Dr. Jeremy Shefner on Lou Gehrig’s Disease (ALS) and Sharon Bauer, RN on Peripheral Stem Cell Transplants, plus review of a headline about premature infant deaths by Dr. Dave Smith, president of SUNY Upstate
Information is temporarily unavailable.
January 27th, 2009 by Trisha Torrey
For several years now, I’ve sounded the warning bells — stay away from those websites that allow you to put your own health records online for free….
You can’t imagine how much grief I’ve taken for that statement. Especially when I point out that organizations like the Mayo Clinic and the Cleveland Clinic are actually partnering with the likes of Microsoft HealthVault to put patient’s personal medical records on the web.
And I still say — NO!
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.
And now, it turns out that not only do they want to sell our information, Google hopes to get a piece of the federal money pie being set aside for electronic health records, too?
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.
