Why do patients blog? Why do they reveal personal information and medical experiences on the Internet?
1) To Share Information
Annette McKinnon, author of ‘Here’s Your Gold Watch, Rheutired,’ started her blog “to inform people about things I learned that seem obvious to me now, but were hard to learn.” Carolyn Thomas, author of “My Heart Sisters” agrees, “I started just to share what I’d learned at Mayo Clinic about women’s heart disease.”
Patients blogs are vehicles for patients to learn about options for their condition and to understand side effects, according to AutoImmuneGal, who writes for a blog by that name. “I blog to share experiences with the medical system and autoimmune disease and I hope it is useful to others. Readers share ideas and a beneficial dialogue emerges.”
As Patti Koblewski describes it, patients blogs are a type of interpersonal GPS, “a central location to help guide others on their journey” with information and resources. “If it can reach one person and help them through a tough time, it’s worth it!” she believes.
One of the best parts of blogging is getting your experiences and thoughts out on paper, or in this case the blogosphere. Annette keeps writing “because it is a fulfilling and a creative outlet.” As a nurse, Andrew Lopez believes that blogging is a cathartic, self-reflective process, much like journaling. “These days, a blog can reach a whole lotta people with the right message, content and people supporting it.”
3) To Provide Support
Those with metastatic disease, especially metastatic breast cancer, do not have many support opportunities. As Donna Peach author of Dancing through Life’s Adventure with Breast Cancer explained, “Often doors for support have closed on people because of fear…People who attend breast cancer support groups are often those who think their cancer won’t return; we with Metastatic Breast Cancer are, I guess, a wakeup that it can return…Dealing with MBC is overwhelming. I present an open door,” in other words, a supportive community.
As Patti relates, “It is very hard for patients to maintain a positive attitude when dealing with chronic conditions; other patients help give hope.”
4) A Bridge Between Health Care Providers and Patients
Being educated before walking into the doctor’s office is important, says Autoimmunegal, because appointment time frames are often limited. This is why so many bloggers feel that they are acting as a bridge between health care providers and patients.
Anne Marie Cicarella, author of Chemobrain…in the fog, hopes that she is providing a bridge. “I want to know people are asking the right questions of their doctors.”
For Carolyn, writing about the psychosocial impact of surviving heart attack , is filling in a gap. “Women aren’t hearing it from doctors.” Katherine K Leon, who writes A Dose of Reality and contributes to The SCAD Alliance agrees. She believes she and her fellow patient bloggers are providing a form of health literacy education.
As a physician and a patient, Dr. Brian Stork shares his story to help others.
5) A View of Reality: Living With a Disease
Having “been there” gives what these patient bloggers write legitimacy. They provide a different perspective on treatment. AnneMarie explains, “No one gets it like someone who’s already been there. “ Patti states, “It means so much more when hear it from patient who has been through it!”
Donna described in detail changes that were occurring, “Yesterday I resorted to ice under the arms plus Tylenol to decrease my temperature when it rose over 103 degrees.” Or, “The last few months have had a frightening effect on my overall positive attitude. Too much news about my cancer’s progression, sad eyes from those delivering the news and the recognition that my cancer has changed from a slow-growing type to a more aggressive type have all taken a toll while being in the hospital and at home with many crises”.
Donna “wanted to provide a place for others to know someone” who had metastatic breast cancer “personally.” “People with catastrophic disease need safe places and information; there’s lots of bad information on the World Wide Web along with good. My blog helps with good information.”
6) Being a Patient Advocate and Activist
There are levels of activism and advocacy that patient bloggers seek. Inspiring patients to activism, if only with their own physicians is Katherine’s wish.
AnneMarie puts it this way, “There are two parts to my own blogging: providing a shoulder and being a big mouth about things that must change. To me, these are both equally important.”
7) To Enhance Communication with Health care providers
Many patient bloggers want their message to be read by physicians, nurses and other healthcare providers. In fact, some are actively engaged in promoting to them.
Yet Lori Marx-Rubiner who writes at Regrounding, isn’t actively promoting her blog: she just “ want[s] doctors to read A BLOG…I don’t care if my doctors read me.”
As Donna stated, “I want my blog to encourage dialogue between patient and physician with mutual respect. If that is lacking, no amount of information will heal that communication. “
What you do think?
Do you agree with AnneMarie when she says, “The era of patient driven EVERYTHING has arrived. From research benches to bedside, we belong at those tables.”? Do you read patients blogs?
Summary of an #HCHLITSS tweet chat conducted February 7, 2013.