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.

Comments

[Brian Walin]

Hi Jeanne!

This is such an important subject. I don't think I'd be alive without having used the net to get information. Gathering info and contact with other cancer patients is essential to living a healthier life.

Sometimes just to talk to another patient when you know your family just can't understand, is a great help. Learning from others what works for them and how they deal with issues is so important.

I found your blog through a web search and even though we have different cancers I learn a lot just by reading your daily trials.

Cancer is so overwhelming sometimes we all need help and our doctors often keep a distance so as not to get too involved personally. I've read they are taught to keep a distance so they are not emotionally affected by death of patients. That seems utterly inhumane to me.

So, for now we must find other avenues to accomplish getting the answers we need. Thank God for the net!

One thing I have noticed: every cancer survivor I know seems to be more in touch with nature. Animals, scenery, flowers, and a beautiful sunsets all fill the spirit with positive energy. We all have a greater appreciation for what we have been given despite what has been taken away.

Cancer is not for the weak and doctors don't have all the answers, so we all need to reach out and find what works for us individually. Our blogs help us all to gather and share information. The net is a great resource to find others with the compassion, strength, and insight to help us survive!

Peace B
http://beyondtheglassdoor.blogspot.com/

[Carver]

Hi Jeanne, I also think this is an important topic and one of the ways the internet can be useful. Sometimes the internet gets a bad reputation but I think it's very beneficial in many ways. I think it's great that you can help people through the maze of clinical trials. I know with melanoma that there are so many new ones because there aren't great treatment options and it's helpful to have someone experienced with the different phases.

You bring up so many important topics on this blog and it's helpful for people to know they aren't alone.

[debutaunt]

The "internets" as I call them were such a lifesaver for me, literally, when I was going through treatment. Yes, there's a lot of creepy stuff out there, but I e-met some of the most wonderful people in my life online. Their love and support sustained me through many rough days - comments from strangers, email, and my blog was the only connection I had to the world at times.

When you are stuck as an inpatient (aka in the big house) for weeks on end, it's pretty cool to be able to surf the world.

Besides, that's how I found you!

Thanks for the links. Big hugs me, Tim and Z.