The Assertive Cancer Patient

A Report: Sick Folks Use the Web (Duh!)

A report from the California HealthCare Foundation says that 80 percent of consumers search the Internet for health-related information. (I'm betting it's higher for those newly diagnosed with cancer--anyone have any numbers?)

At the same time, the report says, "Relatively few patients tap the Internet to manage their care, including scheduling appointments with their doctors, filling prescriptions, or using ratings information to make choices about their doctors or hospitals." Of course, we'd be e-mailing our doctors if we could.

The report also didn't break out the numbers of people using bulletin boards, listservs, and so on.

Then it goes on to give some specifics about people in California.

Read the report:

Just Looking: Consumer Use of the Internet to Manage Care

@ Jeanne Sather 2008.

Cancer Bloggers Reunion: Panel Discussion

I had a meeting with a couple of folks at Cancer Lifeline last week, and we've set the date for the one public event during the First Annual Cancer Bloggers Reunion in July.

It will be a panel discussion at Cancer Lifeline on Friday, July 25, from 1 p.m. to 3 p.m.

Those of you who are planning to come, watch for an e-mail from me asking for topics for discussion both at the public panel discussion and during our three days together. I'll also want some info about you, your cancer, and your blog, both to share among ourselves and for Cancer Lifeline.

For more about Cancer Lifeline

For more about the Cancer Bloggers Reunion

(Click on the link and scroll down.)

@ Jeanne Sather 2008.

Seattle Times Quotes My Blog

In a follow-up to my posts on e-mailing doctors, The Seattle Times has quoted my blog (and your comments) in a recent story.

Read the story: Group Heath trolling cyberspace to learn what patients think

Read more on my blog: E-Mail Your Doctor?

@ Jeanne Sather 2008.

E-Mail Your Doctor?

First, the backstory. I wrote in a post on April 17, after seeing my oncologist, Dr. Lee:

What else? I gave Dr. Lee the posts I've written about cancer patients preferring to e-mail rather than call their doctors, complete with all the comments you folks had added, and told him this was a very polite request from me that they consider allowing patients to e-mail rather than call.

He was totally sweet about it, and said he would give it to the practice manager! So I will keep you posted on that.

A few days after that, I received this e-mail from the practice manager:

Hi Jeanne--

Dr. Lee met with me today and gave me the copies you hand carried to him at your appointment last Thursday. I also went online and checked out your blog and the comments that others have posted about the desire to communicate with their physicians via e-mail, rather than phone calls.

You are very well informed and seem to have many of the details as to why we cannot share PHI with you via unsecure networks at this time. I appreciate your comments and your request. I am also the Privacy & Compliance Liaison for our practice and we continue to explore options on how to achieve the required level of security to preserve patient confidentiality. We are in the process of redesigning our website right now. Please stay in touch with me, and I will keep your comments ( & those of others) in mind as we proceed down this path.

When you are in the office for your next appointment, please ask the front desk if i am here -- I would like to meet you and say hello!

Take care-

Denise
Denise Parkinson, CMPE
Practice Director
Puget Sound Cancer Centers

Pretty cool response, I thought. I like it when people take me seriously. Here is my reply:

Denise--thank you very much for getting back to me.

I do understand about patient privacy issues, and that it would require changes in your computer systems that might be rather expensive. And I appreciate your listening to the voices of cancer patients, many of them people like me with metastatic disease, who would find it so much easier to e-mail their doctors rather than call.

As you saw in the article about Group Health, the doctors seem to find it more efficient too, once it is in place.

I will definitely ask for you next time I'm in. I am really happy with the care that I'm getting at PSCC from Dr. Lee and the rest of the team. I was especially pleased to have a woman from the billing office come and find me and discuss my bill and a payment plan with me face-to-face. That was much appreciated.

Jeanne

Praise where praise is due.

Here are the posts and newspaper story I gave to Dr. Lee:

Do You E-mail Your Doctor?

E-mail Vs. Phone Tag

The doctor will e-mail you now

@ Jeanne Sather 2008.

A Report: The Wisdom of Patients

Teri, The Cheeky Librarian, sent me a link to a new report from the California HealthCare Foundation: The Wisdom of Patients: Health Care Meets Online Social Media.

Basically, the report confirms what those of us who have cancer and use the Web heavily--for blogging, online support groups, bulletin boards, listservs, and all the rest, already know: The Web, and the people we meet there, is a huge help to people managing chronic illnesses, like cancer.

Here's part of what it says:

Social media on the Internet are empowering, engaging, and educating health care consumers and providers. While consumers use social media -- including social networks, personal blogging, wikis, video-sharing, and other formats -- for emotional support, they also heavily rely on them to manage health conditions. ...

Using examples, this report describes how the Web is becoming a platform for convening people with shared concerns and creating health information that is more relevant to consumers. Social networks, ranging from MySpace to specific disease-oriented sites, are proliferating so rapidly that new services are already under development to help health consumers navigate through the networks.

The report details how innovative collaborations online are changing the way patients, providers, and researchers learn about therapeutic regimens and disease management. It examines the benefits and concerns regarding Health 2.0 and it also includes an extensive listing of health media resources.

To read more, or to download the full report:

The Wisdom of Patients: Health Care Meets Online Social Media

Over the past few days, I've been e-mailing back and forth with a man whose father-in-law has stage IV melanoma. I introduced him to Carver, who had stage III melanoma, and I've also been helping him to understand clinical trials and what the different phases mean.

He found my blog, and me, by doing a Web search.

@ Jeanne Sather 2008.

Great 'My Turn' in Newsweek

The March 24, 2008 issue of Newsweek has a great "My Turn" piece about the power of the Web to help someone with cancer.

"My Turn" is written by Newsweek readers, and it's a feature I almost always read. (I've also pitched "My Turn" pieces unsuccessfully a couple of times over the years, but that's another post for another day.)

In "An Electronic Cure for Despair," Rich Thomas writes about the e-mails that raised his wife's spirits--and probably prolonged her life--when she was battling cancer, in the hospital, and in pain.

If you don't get the print edition of Newsweek, here's the link to the story online:

An Electronic Cure for Despair

Where Did All Those Readers Come From?

The Typepad stat counter shows that my blog has gotten 911 page views in the past 24 hours.

My daily average is 518 page views, so where did all those readers come from?

Usually when I get a spike like this, it's because someone else has written a story about me with a link to my blog, or I have a story in another publication, like the recent piece I did for Crosscut. The day that story appeared, I had 601 page views, so just a small spike.

The last time I had more than 900 page views in one day was December 11. Back then, I was writing about surviving the holidays and recycling unneeded drugs through drug repositories.

I checked my stats and referrers, but there's no one referrer sending all these folks to my blog today.

It's a mystery.

@ Jeanne Sather 2008.

Google's Reading My Mail!

I know the good people at Google are not actually READING my mail (although the government may be, oh paranoia!), but whenever I open an e-mail in my g-mail account, the one I use for this blog, there are ads in the right column, supposedly targeted to the content of the e-mail message.

It's disconcerting, to say the least. It feels like they are reading my mail.

But because the ads are not targeted by real, thinking people, but by robots, which are only as good as the folks who write the code, things like this appear to the side of an e-mail message from Amy, in which she mentions her husband's stem cell transplant:

Bosley Eyebrow Transplant
Eyebrow Transplantation Is A Simple Outpatient Procedure. Learn More.
www.Bosley.com

OK, I'm fascinated, but so far I haven't clicked through to see what an eyebrow transplant actually is. I don't think it has anything to do with cancer. Everything seems funny today.

@ Jeanne Sather 2007.