Blogging for Health: Survey about Why People Blog about an Illness

January 23, 2010 at 8:50 am 29 comments

Pam Ressler, RN, BSN, HN-BC, one of my students, and I are researching why people choose, or don’t choose, to start and maintain a blog about a health condition. We would appreciate your answers to these questions. We will publish the results of our study here as well. Please respond in a comment or email me.

If you have a blog:

When and why did you start your blog?
What do you see at the primary reason(s) you continue blogging?
How often do you typically post?
What types of feedback do you receive? How many comments do you typically get to each post?
Do you know how many unique visitors you have during a particular time period (say 2009)?
Do you do anything to promote your blog or attract new readers?
Do you use your real name in your blog?
Do you read other blogs by people with health issues and, if so, which and why?
Have you shown your blog to your doctor or other healthcare professional?

If you don’t blog:

Why didn’t you blog about your illness? Did you consider blogging about your illness?
What do you see as the primary reason(s) you didn’t blog about your illness?
If you have discussed your illness with individuals besides your healthcare team, how have you done so (phone, email, in-person support groups, discussion boards, etc.)?
Do you read other blogs by people with health issues and, if so, which and why?

If you know of someone who blogs about their health, please forward this to them or let us know how to contact the person.

Entry filed under: health, online health communities, Web 2.0. Tags: , , , , , , .

Every Person Has a Right to be Healthy: An Interview with Susan Harrington from the Boston Public Health Commission Health Stories: Triggers for Seeking Health Information Online

29 Comments Add your own

  • 1. The Texas Woman  |  February 28, 2010 at 5:37 am

    Sent you an email with my answers. Hope it’s not too late to help with your project.

    Reply
  • 2. Kristin  |  February 26, 2010 at 5:34 am

    When and why did you start your blog?
    I started my blog My Battle With Cushing’s Syndrome in Dec 2008, shortly after I was diagnosed with Cushing’s syndrome. My doctor gave me very little information about what to expect in recovery – the challenges and length of time it would take to fully recover. As soon as I was diagnosed, I went online in search of information about this disease and to hopefully learn about other patient stories. I did find some patient blogs and a community site dedicated to Cushing’s, but found the discussion forums to be incredibly depressing – people were wallowing and feeding off one another’s depression. So I decided to share my story online – as therapy for myself, in hopes of connecting with others like myself and to help others with their recovery journey by sharing insights my doctor never prepared me for.

    What do you see at the primary reason(s) you continue blogging?
    For the same reasons I started blogging about my story – as therapy for myself, in hopes of connecting with others like myself and to help others with their recovery journey by sharing insights my doctor never prepared me for.

    How often do you typically post?
    For the first year and a half, I posted about once a week. Recovery from Cushing’s is a long, slow process that often takes up to 2 years. So I had a lot to talk about for the first year and a half. Now that my recovery is nearing an end, I post one, maybe two posts a month. Another reason my posting frequency has slowed down is because I have been focusing my efforts on a virtual support group I started for Cushing’s patients.

    What types of feedback do you receive? How many comments do you typically get to each post?
    I receive both comments and direct emails from readers. A lot of the feedback I receive is someone sharing their personal story about Cushing’s with me and how finding and reading my blog has helped give them insights about their struggles with Cushing’s. Some posts tend to be more popular than others, so some posts don’t receive any comments but an average I receive 5-7 comments. I typically receive 1-2 direct emails per week from new readers. The emails I receive from readers are amazing and are one of the reasons I keep blogging

    Do you know how many unique visitors you have during a particular time period (say 2009)?
    Yes – I use an analytics program to track traffic stats on my blog. On average, I have 50 unique visitors a day. Considering how rare Cushing’s is and that it’s a small community, 50 unique visits per day is great.

    Do you do anything to promote your blog or attract new readers?
    Yes all the time. First, my blog has been thoroughly optimized for search and is in the top position in the search results for many keywords related to Cushing’s. I also promote my blog on my support group as well as on Facebook.

    Do you use your real name in your blog?
    Yes. I’m proud to say that I’m a survivor of Cushing’s syndrome.

    Do you read other blogs by people with health issues and, if so, which and why?
    Most definitely. I read a number of blogs written by people dealing with Cushing’s, patient advocacy, e-patients as well as staying up on current developments and news about Cushing’s. I feel it’s important to stay connected to what I’m doing by being an active participant in the blogging community. My blog doesn’t exist in a single bubble, but rather a collaborative community that encourages and thrives on the exchange of thoughts, ideas and information.

    Have you shown your blog to your doctor or other healthcare professional?
    Yes I have. When I first started blogging, I was afraid to tell my doctors that I was writing about my journey with Cushing’s online. I think part of me thought they wouldn’t take me seriously. I’ve since gotten over that fear and have shared about my blogging experience, along with starting a support group for Cushing’s patients. I’ve received nothing but positive feedback.

    Reply
  • 3. Alena  |  February 16, 2010 at 1:10 pm

    I recently came across your blog and have been reading along. I thought I would leave my first comment. I don’t know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.

    Alena

    http://ovarianpain.net

    Reply
  • 4. MelindaStrauss  |  February 13, 2010 at 3:14 pm

    6 out of 10 People in the US, Canada and Europe are Over weight, so losign weight has become the most important goal for many around the globe. If someone is a lazy slob who wants a ‘magic pill’ to give him a fabulous bpdy, that will always remain as a dream.
    One should be willing and determined to in efforts over a period of time and only then they can get lasting results. I find a few programs quite interesting and effective, you can also check some programs here and rate them based on your experience. Find the programs here WeightLossKarma.Com, lose weight easily
    – by Melinda

    Reply
  • 5. echographie 3d  |  February 9, 2010 at 4:47 pm

    The blog is really nice one and full of information we appreciate the kind of information you have provided in this post. The information are so useful for all of us and we would like to thank you from the bottom of our heart for this wonderful information.The things you have discussed about in this post which are supposed to be very helpful for us. Because of these wonderful information in this post the blog can be viewed again and again.

    Reply
  • 6. Cathie  |  February 7, 2010 at 1:22 am

    (Sorry, I will write some faults because i’m french)

    – When and why did you start your blog?
    When a friend died, she was almost 40’s old. I wanted to stop keeping silent. And because I was twice breast cancer survivor

    – What do you see at the primary reason(s) you continue blogging?
    It was freeing, that allows to restore some truths

    – How often do you typically post?
    1 or 2 per week

    – What types of feedback do you receive? How many comments do you typically get to each post?
    There is not a lot of blog comments, some more DM, but feedback kept quiet

    – Do you know how many unique visitors you have during a particular time period (say 2009)?
    2200 hits (blog began on november, 2009)

    – Do you do anything to promote your blog or attract new readers? Twitter

    – Do you use your real name in your blog? No

    – Do you read other blogs by people with health issues and, if so, which and why?
    I read e-patient blog, research blog and site, for learning and sharing

    – Have you shown your blog to your doctor or other healthcare professional?
    Not still, but I shall make it certainly

    Best regards

    Reply
  • 7. twitterer  |  February 6, 2010 at 1:39 am

    If you have a blog:

    When and why did you start your blog? I was wanting a place to “talk” about my weight loss surgery, Gastric ByPass surgery. It just went on from there.
    What do you see at the primary reason(s) you continue blogging? Its a place for me to vent.. not just about me but others with weight issues.
    How often do you typically post? It used to be frequent, but its been limited lately.
    What types of feedback do you receive? How many comments do you typically get to each post? I ask for no feedback. I get no comments.
    Do you know how many unique visitors you have during a particular time period (say 2009)? in 2009 I had about 200 hits.
    Do you do anything to promote your blog or attract new readers? No, I dont do it for publicity.
    Do you use your real name in your blog? No way.
    Do you read other blogs by people with health issues and, if so, which and why? I read many and sometimes comment on my blog about their’s but only for my own benefit.
    Have you shown your blog to your doctor or other healthcare professional? No

    Reply
  • 8. shadowlight and co  |  February 2, 2010 at 5:49 am

    When and why did you start your blog?
    I stared a website last year and a blog seemed like a good next step. I started the blog in November 2009

    What do you see at the primary reason(s) you continue blogging?

    Mainly to spread awareess, give advise and let people knw that they are not alone

    How often do you typically post?

    It varies… I try to do so once a day, but it depends on when inspiration hits me or how often I find an interessting/useful peice of research to share

    What types of feedback do you receive? How many comments do you typically get to each post?

    I seem to get more twitter replies than blog cmments. But I don’t mind that, I know people are reading it and so the message is getting out. and that’s al that matters🙂

    Do you know how many unique visitors you have during a particular time period (say 2009)?

    Erm… according tot he hit counter on my page I’ve had 200 in Janurary of this year

    Do you do anything to promote your blog or attract new readers?

    Erm, I advertise new posts on twitter. I generally ost a version of every post on my website as well as my blog though, so ended up with 2 seperate audiances lol. I also do postering campaigns every month or so and the link is written on them

    Do you use your real name in your blog?

    Well we have DID, so there are 3 of us in this body lol So we have a screanname (shadowlight) to which we will all answer

    Do you read other blogs by people with health issues and, if so, which and why?

    I will read blogs on any topic within mental health… I like to keep up to date on things and although I spread hours reading journals and research papers it’s always possible to miss someting, and it’s always good to get other peples perceptions and pinions on a topic

    Have you shown your blog to your doctor or other healthcare professional?

    No… I never thought of that… My website has been looked over by a psychiatrist but nt my blog as yet

    Reply
  • 9. Most Tweeted Articles by Pharma Experts: MrTweet  |  January 31, 2010 at 4:09 pm

    Your article was most tweeted by Pharma experts in the Twitterverse…

    Come see other top popular articles surfaced by Pharma experts!…

    Reply
  • 10. Robin  |  January 31, 2010 at 7:14 am

    When and why did you start your blog?
    I started the last day of May in 2008 with my survive the journey blog, and January 1, 2010 with my 365 Days with Cushing’s Disease site.

    Why? With the stj blog, I started simply to put the information I found I was typing over and over again to share with others. I decided it would be easier to link to it. But then, several “Cushies” started blogging and we decided to do a logo (which I did for us) to show our commonality. We already wer united in the notion there needed to be more education about the disease.

    With the 365 blog, someone on twitter issued a challenge to do a 365 blog. I don’t even remember who. I was intrigued. I saw it as a quick way to show the daily issues (good and bad) that go with my journey with the disease. I really wasn’t sure how to do it, so I just jumped in. There are aspects I’d like to show that are so personal I haven’t figured out how to w/o embarrassment.

    What do you see at the primary reason(s) you continue blogging?

    I now blog at stj for the same reason, plus more. That blog quickly evolved into more than just my Cushing’s journey. I like to say I was an e-Patient long before i knew what one was. Communication with doctors and the medical folks became part of it. My own struggles became a part. Sometimes simply sharing news became a part.

    At 365, it’s pretty much the same reason I started.

    How often do you typically post?

    stj: It used to be daily. In fact, I felt pressured to post daily or almost daily. Now, I post when I can and when I have the energy.

    365: Daily. But it’s a quick, easy, email-it-in post. I can take a picture with my Bberry, email it with title and comments, and never have to open a computer. I can do it from anywhere. It’s really an easy approach. Sometimes I do take time to do some photoshopping or blending of pictures for a final effort. Most of the time, I don’t.

    What types of feedback do you receive? How many comments do you typically get to each post?
    I get lots of email. Some posts get a lot of feedback on stj and the 365 blog. Others don’t, but I get a lot of email. I also get comments on the cushings-help.com message boards and on facebook and twitter. More on FB than twitter.

    Do you know how many unique visitors you have during a particular time period (say 2009)?

    I didn’t track stats that well, It didn’t/doesn’t matter to me. I do use statcounter, but I don’t keep past stats. In other words, I don’t archive them. I’ll be glad to email what I can get from the 365 blog which posterous sorta tracks, but I can’t use statcounter on there. I’m not sure they are unique visits, though.

    Do you do anything to promote your blog or attract new readers?
    I post links on twitter and FB. I also post some on the CH message boards. Again, I’m all about getting the information to the right people, not quantity. I do see a lot of hospitals visits to the stj blog. Since I can’t put statcounter on the posterous blog, I have no idea who is visiting. I guess google analytics could show that. Again, I’m not sure it matters, and I don’t have the energy/time to make it matter.

    Do you use your real name in your blog?

    I use my real first name and last initial. A lot of folks who read the blogs know me from other places and know my full name. If there is legitimate reason to share it privately, I will.

    Do you read other blogs by people with health issues and, if so, which and why?

    Yes. I have my google reader full of blogs. I read such a variety of medical/health/technical/other blogs that it would take all night to list them. I read doctor blogs to get their perspectives and to share mine when pertinent. I try to point out a Cushing’s patient’s perspective. I read e-Patient related for the same, plus I have a vested interest in this issue. I’m a technology person by trade and interest, and am very interested in HIT. So I read a lot of those blogs. And I’ve found a lot of interesting people with a lot of interesting things to say on Twitter. I follow them and read their blogs. Most of all, I have a love for learning which precluded any of this, so I love to read them just to learn.

    Have you shown your blog to your doctor or other healthcare professional?
    Yes. My present endocrinologist reads my blog and shared information with me to share there. Some former endos (who I didn’t see for long) read it, too, but they act like they don’t. Don’t ask how I know. It’s a state secret.😉 (I do know for sure, though.) My PCP isn’t very computer savvy and doesn’t seem interested in email, blogging, or anything else on the computer, but she does allow me to email her if I don’t push the envelope and if I am sending her pertinent information. She’s a nice person, overwhelmed with her job, and has a family. I understand. I also think that needs to change and she is so sweet to acknowledge that. She puts up with me.

    Reply
  • 11. PhilFeed › Fresh From My Twitter today  |  January 30, 2010 at 11:17 pm

    […] you blog about your health? Good questions from @lisagualtieri – http://bit.ly/auqTmG #RNchat #hcsm This is so good: Parody of news stories – http://bit.ly/c8t2jx Transcript of […]

    Reply
  • 12. Barbara Keith Payne  |  January 28, 2010 at 11:46 pm

    When and why did you start your blog?
    I started my blog after my diagnosis just before my double mastectomy, primarily to keep friends and family up to date on my treatment and lessen the amount of individual emails and phone calls I had to deal with.
    What do you see at the primary reason(s) you continue blogging?
    To keep people up to date and interact with people who might be interested in what is going on with me but don’t want to bug me by calling or emailing –
    How often do you typically post?
    once every few weeks is all I have found time and content for. My blogs usually have a theme and a storyline and are fairly in depth.
    What types of feedback do you receive? How many comments do you typically get to each post?
    I get lots of emails and only about 5-7 comments per post although I am constantly amazed at people I run into who say they have read it. Many of them I barely know!
    Do you know how many unique visitors you have during a particular time period (say 2009)? no
    Do you do anything to promote your blog or attract new readers? I facebook and email people the link – and post on sites like this!
    Do you use your real name in your blog? yes
    Do you read other blogs by people with health issues and, if so, which and why? yes I read several other breast cancer bloggers –
    Have you shown your blog to your doctor or other healthcare professional? my doctors know about my blog but I have no idea if they have read it!

    Reply
  • 13. Beth L. Gainer  |  January 27, 2010 at 12:01 am

    When and why did you start your blog?

    I started my blog about a year ago with the intention of helping others advocate for their needs. I am a breast cancer survivor, but I have had to do a lot to advocate for my health, had much medical trauma and drama, and have had to make sure I was responsible for choosing my physicians. I started to blog to share my expertise on self-advocacy through the medical system.

    What do you see at the primary reason(s) you continue blogging?

    People comment to me that they find my blogs useful. As an advocate who wants to help others, I feel compelled to write about my experiences and offer advice. I also love the craft of writing.

    How often do you typically post?

    I started once a week, but I have other writing projects that take me away from blogging, but I always come back to posting what I feel is informative.

    What types of feedback do you receive? How many comments do you typically get to each post?

    I get very few comments on my blog, but I have a wide readership. People tell me via Facebook how much my blog has helped, and every so often someone will tell me he/she has been following my postings and then ask me if my blogs could be streamlined into a website.

    Do you know how many unique visitors you have during a particular time period (say 2009)?

    I have a stat counter, but I don’t feel it’s an accurate portrayal of who is reading my posts. Overall, I had more than 1,000 hits, but I’ve heard from others who read my blog and who weren’t part of the statistics.

    Do you do anything to promote your blog or attract new readers?

    Yes. I leave comments (authentic ones), and I ask to guest post. I’m very passionate about what I write, so it’s from the heart. I also use Twitter and Facebook to announce a new posting.

    Do you use your real name in your blog?

    Yes.

    Do you read other blogs by people with health issues and, if so, which and why?

    Yes. Lately it’s been “In the Loop” because it’s an up-and-coming blog magazine with really great content. Oh, by the way, I have a guest posting coming up sometime this week. See, I’m shamelessly promoting myself now.

    Have you shown your blog to your doctor or other healthcare professional?

    No, but if my doctors plug me into Google, they’ll find me!

    Reply
  • 14. Nicole  |  January 26, 2010 at 2:32 am

    If you have a blog:

    When and why did you start your blog?
    What do you see at the primary reason(s) you continue blogging?
    How often do you typically post?
    What types of feedback do you receive? How many comments do you typically get to each post?
    Do you know how many unique visitors you have during a particular time period (say 2009)?
    Do you do anything to promote your blog or attract new readers?
    Do you use your real name in your blog?
    Do you read other blogs by people with health issues and, if so, which and why?
    Have you shown your blog to your doctor or other healthcare professional?
    ——————-
    I started my blog a few weeks after I was diagnosed with my illness. I continue to blog because for two reasons, I benefit from all that I continue to learn about my illness. I know that other people benefit from what I share. I post between 3-5 times a week. Most of the comments are about my writing ability moreso than my illness. I don’t get a lot of comments on the actual blog, but I receive personal emails a lot from readers. Usually remarks range from zero to about 7 comments. I don’t know how many unique visitors I’ve had over the life of the blog but just a few hundred over the past couple of months. I don’t do much to promote the blog. I have it linked to facebook and twitter and I have a fb fan page. But generally, that’s about it. I use my real name and my actual face. I try to read a little from other medical blogs about my illness but not too many personal ones. I have never shared my blog with any of my doctors or medical staff. Never really thought they would be interested in what I had to say.

    Reply
  • 15. Colleen Young  |  January 26, 2010 at 12:44 am

    1. When and why did you start your blog?
    -January 2009. To enhance the community knowledge tools/resources of SharingStrength|FortesEnsemble. To help mentor and encourage people affected by cancer to be e-patients and e-caregivers.

    2. What do you see at the primary reason(s) you continue blogging?
    – to initiate/stimulate conversations from site members about particular subjects of interest to the breast cancer community. Builds a peer supported resource of firsthand experiences and testimonials.

    3. How often do you typically post?
    – regularly every 2 weeks a new blog post. I respond to members as required.

    4. What types of feedback do you receive?
    Very encouraging feedback. People say it is a great resource on their cancer journey. We talk about what people what to know about.

    5. How many comments do you typically get to each post?
    – a big range from 0 to ~40

    6. Do you do anything to promote your blog or attract new readers?
    Yes, quarterly email blasts, refer to blog on discussion forums and through Twitter.

    7. Do you use your real name in your blog?
    Yes, absolutely!

    8. Do you read other blogs by people with health issues and, if so, which and why?
    I follow other bc bloggers to stay in tune with the community. I follow them on Twitter.

    9. Have you shown your blog to your doctor or other healthcare professional?
    Yes, to the members of SharingStrength’s advisory committee http://www.sharingstrength.ca/index.cfm?page=home.aboutWho#advCommittee

    Colleen Young
    Editor of SharingStrength | FortesEnsemble

    Reply
    • 16. Colleen Young  |  January 26, 2010 at 1:26 am

      Actually not sure if our Editor’s blog qualifies for your study as it is not ‘a’ patient’s blog. However, I consider the patient/survivors to be the true authors of this blog. I initiate the conversation, but they provide the useful content.

      Colleen

      Reply
  • 17. Katherine Stone @ Postpartum Progress  |  January 25, 2010 at 10:51 pm

    When and why did you start your blog? I started it in 2004 because I wanted to help other women who go through postpartum depression and related illnesses.

    What do you see at the primary reason(s) you continue blogging? Because the need is still there. There is not enough information available, and what is is often very watered down, high level info that you can get anywhere. Women need specific answers and localized help.

    How often do you typically post? Nearly every day

    What types of feedback do you receive? How many comments do you typically get to each post? I don’t get as many comments as I’d like. Usually just a few.

    Do you know how many unique visitors you have during a particular time period (say 2009)? I had 102,000 unique visits in 2009.

    Do you do anything to promote your blog or attract new readers? Word of mouth, reaching out to other bloggers, and writing for other sites. Since I pay for everything myself I can’t afford to advertise.

    Do you use your real name in your blog? Yes, and my real e-mail address

    Do you read other blogs by people with health issues and, if so, which and why? Yes, mainly those writing about mental health. Psych Central, MGH Center for Women’s Mental Health blog, PPD bloggers (Ivy’s PPD blog, Sharing the Journey, All Work and No Play Make Mommy Go Something Something, Beyond Postpartum, Laughing Through the Chaos, and many more)

    Have you shown your blog to your doctor or other healthcare professional? Yes, and lots of healthcare pros read my blog as well.

    Reply
  • 18. Judy Feder  |  January 25, 2010 at 8:26 pm

    Why don’t you blog about your illness? Did you consider blogging about your illness?
    – Lisa, as you may know, I’m a passionate e-patient, and take part in e-patient communities, primarily BCMets.org. I’m very into the community, and the built-in expertise it provides. Blogging feels like a monologue – one to many. Being part of a community is more like many to many — I take advantage of my fellow members expertise, and they can take part in mine.
    Along with my community, I do send an old-fashioned-mail note to a group of nearest and dearest,whom I’ve amassed since my diagnosis 8 years ago.
    This latter is more the “emotional support” of those who may have been touched by cancer. The former is “information exchange,” which I always say is THE currency of e-patients — especially those dealing with complex, chronic illness.

    What do you see as the primary reason(s) you don’t blog about your illness?
    – Blogging does not serve my needs as well as do a combo of online community (information) and email notes to my nearest and dearest (my way of expressing my love for friends and family).

    If you have discussed your illness with individuals besides your healthcare team, how have you done so (phone, email, in-person support groups, discussion boards, etc.)?
    Do you read other blogs by people with health issues and, if so, which and why?
    – Yes, but I make the distinction. I have found no one who really understands the mets experience except people who are going through it, and it has been an important opening up for for me to email my feelings to those I love.

    Do you read other blogs by people with health issues and, if so, which and why?
    – I do. Some fellow cancer patients, even those who don’t share my diagnosis, blog, and I admire them greatly. I read e-patients.net, and Dave deBronkart’s blog. I have a Google homepate with a series of blog feeds — things that catch my eye. I’d say they do skew more toward information than emotional support– there is so much we need to learn and impart about our beleaguered system. I’m passionate about doing what I can with the time I have left to bring the voice and experience of the patient more to the fore.

    Reply
  • […] the original here:  Blogging for Health: Survey about Why People Blog about an Illness … tags: complete-solution, create-new, graphical-user, gui, installation, internet, […]

    Reply
  • 20. doctorblue  |  January 24, 2010 at 7:31 am

    When and why did you start your blog? 1) In 2008. To help me self-diagnose since all the doctors I saw while insured by Cigna HMO did nothing more than refer me to other doctors and more tests because my case was too complicated and they didn’t think I looked sick enough. Much easier just to prescribe anti-depressants and tell the patient that all the positive cultures were components of normal flora which do not cause disease. They didn’t believe in the concept of “overgrowth.” I became disabled at age 50 as a result of not being diagnosed or treated. 2) To publicize my story about what really needs to change in order to truly reform U.S. health care. 3) As a support network. Others with similar stories contact me. I found that the practice of for-profit western medicine has largely followed the same route as subprime mortgages. Lenders profited at the expense of many because providing mortgages was no longer about providing a service; it became purely about making money. The same thing has happened with health care to a large extent., and mandating that everyone just buy for-profit insurance isn’t going to address one aspect of what really needs to change.

    What do you see as the primary reason you continue blogging? To expose and for morale support. Doing my part to shed some light on what is actually taking place in western medicine. Unless you have experienced chronic illness firsthand, I found you probably still believe in deist medical care.

    How often do you post? Frequently when I started, but now maybe once a month for a couple of reasons. I name names and try to put what transpires into perspective. That requires putting some time between the event and my post. Also at the start of 2009 I changed my approach. Instead of relying on doctors to diagnose me and recommend treatments, now that I know what my medical problems are and how they are best treated, I seek out those doctors who I’ve determined through research and referrals have the knowledge and will to help me heal. These doctors incorporate my own research and recommendations into their recommended protocol. After six years and a life time of not being taken seriously (the root cause of my problem is congenital and requires surgery), I’ve finally connected with some excellent physicians and surgeons and am in the process of getting treatment. My focus in 2009 was doing what I needed to do to find that help. And being very ill, that consumed most of my energy and still does.

    Feedback? Typical number of comments? 0-2 comments, however, those who visit my blog are typically others who are experiencing similar health issues and are being tossed among doctors like a hot potato as well.

    How do you attract readers? Promote blog? I read other blogs of injured or chronically ill patients and tell them in comments about my experience and reference my blog. I also joined some community blogs made up of patients with similar illnesses. I reference my blog there. I am also in Facebook where readers can link to my blog. I mention my blog to patients I meet in doctors waiting and IV treatment rooms.

    Do you use your real name? I go by Doctorblue (sad about doctors)but stipulate the blog is a patient’s quest for competent health care. However, if patients privately email me, we exchange real identities. Mostly worried about spam and no-good-doers.

    Shared blog with your doctor? I’ve mentioned that I blog about my health care experiences to doctors who are helping me now. They are nonplussed because these doctors have heard the same type of story from many of their patients. They realize what goes on and why their practices are so different. For instance, many don’t take any medical insurance. The new patient office visit is one and a half hours, which is how much time it takes to go through all of a chronically ill patient’s test results, examine the patient, discuss therapies and treatments and answer the patient’s questions. The surgeons I saw at Univ. of Md Medical Center and the Cleveland Clinic both accept Medicare and spent just as much time with me on my visits there as well. Doctors can’t diagnose and treat a patient competently in 10 minutes no matter how many tests are prescribed or referrals are made. I found only what I consider to be the incompetent doctors care about getting poor patient write ups on the internet.

    You can check out my posts at http://doctorblue.wordpress.com. I’d be interested in seeing the results of your study.

    Reply
  • 21. Anne Marie Cunningham  |  January 24, 2010 at 6:45 am

    Lisa,
    With something as personal as this why don’t you or you student allow anonymous comments? It would be a way of increasing responses from those who do not blog.
    Anne Marie

    Reply
    • 22. SynovialSensation  |  January 24, 2010 at 1:06 pm

      She did, the offer is there to email in. I couldn’t be bothered to open that software, just bunged it here, plus it auto leaves a trace to my blog. I am ‘anonymous’ anyway. Think variety of options is good. In terms of bias repsonse, well that’s very built into the study design. We are going to be very self selecting if we are asked to respond. It’s not a case control or ranomised approach.

      Reply
  • 23. TwittLink - Your headlines on Twitter  |  January 24, 2010 at 5:01 am

    […] Tweets about this great post on TwittLink.com […]

    Reply
  • 24. sharon rainey  |  January 24, 2010 at 3:57 am

    When and why did you start your blog?
    As soon as I was diagnosed. I wanted to keep friends and family members informed and up to date. Also, needed a place to track things. My memory was poor.

    What do you see at the primary reason(s) you continue blogging?
    To keep others informed; to spread the word about my disease, and to keep track of what’s happened!

    How often do you typically post?
    3 times a month

    What types of feedback do you receive? How many comments do you typically get to each post? Mostly positive feedback. I get about a dozen comments each time.

    Do you know how many unique visitors you have during a particular time period (say 2009)?
    Need to recheck, but it’s quite a bit!

    Do you do anything to promote your blog or attract new readers?
    I occasionally mention it on FB and Twitter. I have it on my business card. I mention it to anyone I meet who has the same disease.

    Do you use your real name in your blog? Yes

    Do you read other blogs by people with health issues and, if so, which and why?
    Yes, can’t recall offhand, but most are also listed on my blog page.

    Have you shown your blog to your doctor or other healthcare professional? Yes.

    Reply
  • 25. uberVU - social comments  |  January 23, 2010 at 9:48 pm

    Social comments and analytics for this post…

    This post was mentioned on Twitter by lisagualtieri: If you write a blog about your #health, please help @PamRessler and me with a few questions: http://lisagualtieri.com/2010/01/23/blogging/

    Reply
  • […] This post was mentioned on Twitter by Bertalan Meskó, MD, Dean Sheffield. Dean Sheffield said: Blogging for Health Survey about Why People Blog about an Illness … http://bit.ly/5roLMC […]

    Reply
  • 27. SynovialSensation  |  January 23, 2010 at 1:56 pm

    Sorry, I didn’t paste over the why answer to Q1!

    Because:

    1. I need a diary I can refer to with accurate details of what’s going on
    2. It’s cathartic to concentrate on how I am feeling and to express myself loud and clear
    3. I still find it difficult to bang on about the illness to close fiends and family and I also get bored of talking about illness ALL THE TIME. So bloggin allows me to say most of the main things once only, and then other conversations are actually about our relationshops rather than me me me

    Reply
  • 28. SynovialSensation  |  January 23, 2010 at 1:53 pm

    When and why did you start your blog?
    June 2009
    What do you see at the primary reason(s) you continue blogging?
    To maintain a good record for myself. I’ve already used it as reference several times
    How often do you typically post?
    Now, about twice a month, as I don’t want to illness to dominate my life while it is in a quiet phase.
    What types of feedback do you receive?
    Positive, supportive. Occassionally get told to cut out dairy or buy someone’s hot packs …
    How many comments do you typically get to each post?
    0-4. Most often zero to be honest:)
    Do you know how many unique visitors you have during a particular time period (say 2009)?
    No, not unique visitors. I’ve had 2,200 views sine it started, not including my own!
    Do you do anything to promote your blog or attract new readers?
    If i post something interesting, I say so on facebook and the illness forum I belong to. The blog site automatically tweets any new post.
    Do you use your real name in your blog?
    No
    Do you read other blogs by people with health issues and, if so, which and why?
    Several others with the same illness. A few on the running f the NHS. Because I like to follow how other’s are doing, outside of my own country especially. One or two of them are genuinely informative as well.
    Have you shown your blog to your doctor or other healthcare professional?
    Not yet. I may well do one day.

    Reply
  • […] Blogging for Health: Survey about Why People Blog about an Illness … […]

    Reply

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Trackback this post  |  Subscribe to the comments via RSS Feed


Lisa Gualtieri, PhD, ScM

Lisa GualtieriLisa Gualtieri is Assistant Professor at Tufts University School of Medicine in the Department of Public Health and Community Medicine. She is Director of the Certificate Program in Digital Health Communication. Lisa teaches Designing Health Campaigns using Social Media, Social Media and Health, Mobile Health Design, and Digital Strategies for Health Communication. Contact Lisa: lisa.gualtieri@tufts.edu

@lisagualtieri


%d bloggers like this: