10 Reasons Why Patients Blog and The 5 Reasons Why They Don’t Tell Their Doctors

United Patients by Regina Holliday in the post of why patients blog and why they do not tell their doctors

Patients blog ? Now have you thought about patients who blog? 

I recently attended (well listened-in) to the Medicine 2.0 conference.

I found the Patient Bloggers Panel was one of the most memorable sessions of the conference. Why? It was a reminder of the human-side of Healthcare.

I was struck by the number of patients who have patients blogs and the reasons why they have turned to the social web. However what was more enlightening, and at the same time emotionally dampening, were the reasons why many do not tell their doctors about their blogging activities.  The session revealed that just over 30% of patient bloggers shared their patient blogs with a healthcare provider and that most (90%) shared their writing with friends and family.  The reasons for not sharing patients blogs with their doctors were filled with mixed emotions. The reasons patients blog included:

  1. Patients have a story to tell.
  2. Patients need an outlet for expression.
  3. Patients need to regain a sense on inclusion and purpose.
  4. Patients need to connect with others who may share the same experience.
  5. A cry for help.
  6. Patients need to describe their illness without scrutiny.
  7. Patients find a sense of control in blogging.
  8. Blogging provides a way to manage their situation.
  9. Blogging provides a level of support to both the blogger and reader.
  10. Blogging provides a forum to be heard.

I would also guess that blogging and having a patient blog provides a level of solace when perhaps so few options are available. Writing their thoughts and inner most feelings in itself would provide some level of empowerment and control.

Now on the other side of this equation were the reasons why Patient Bloggers did not share their activity or blogs with their physicians. The reasons were:

  1. Patients did not want their writing discounted by clinicians
  2. Patients felt invisible to healthcare providers.
  3. Patients did not want to be shamed.
  4. Patients did not want their work minimized.
  5. Patients did not want their feelings and thoughts “clinicalized”.

 

So what does this mean to clinicians, patients and industry leaders?

I cannot help but think what missed opportunities. Surely these insights would provide valuable information on the well being of the patient as well as an opportunity to provide extended care.

Why have so many healthcare providers and industry leaders shun the knowledge coming from the patient and the social web?

More recently I was reminded how some Academics have included information from the web and social activity as part of the education and learning process in the classrooms and lecture halls. Students attend their classes with smart phones and laptops so that they may access the web and collaborate in the learning experience with their professors. It has brought learning to a totally new and innovative level.  So why is this act so quickly dismissed in the doctor’s office? When a patient talks about what they have read and learned, their efforts are often marginalized.  I would imagine taking out a laptop would not be well received in many physician’s office.

The hard reality is that Healthcare providers are neither ready nor equipped to manage a more informed, socially savvy patient. The same is true for Industry leaders.  A total change in mindset and practice will be required in order to move to a more “ socially collaborative” healthcare management style ie similar to what we are experiencing in Education. Collaboration provides another means of engagement and a method to better assess and understand both the physiological and mental state of the patient. Now, not every patient would be comfortable with a collaborative approach however the option should be available for those who do.  Collaboration would also provide another option of education for the Healthcare provider.

The good news is that the research did show that 6% of the clinicians surveyed, did encourage patients to blog. A small indicator of the early adopters and those leading the way of changing their style of medical practice.

 

What has been your experience? Do you have a patient blog/

 

 

Painting: Regina Holliday (The Walking Gallery)

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10 Responses to “10 Reasons Why Patients Blog and The 5 Reasons Why They Don’t Tell Their Doctors”

  1. I so agree with you about this being a missed opportunity. Next month I will deliver a presentation at a conferenceto healthcare professionals on how analysing blog narratives enhances understanding of the survivorship experience of younger women with breast cancer – it’s an area I have personal experience of and a subject I am passionate about. Many of us are turning to blogs to find a sense of connection and a means of self construct. Blog narratives are useful analytical tools for understanding the lived experience of cancer survivorship.
    Marie Ennis O’Connor recently posted..What does it mean to be your own health advocate?My Profile

    • Marie,
      First of all, it is lovely to see you here and taking the time to read my contributions.
      Yes, such missed opportunities indeed. I am really excited about YOUR work in spreading the word. You have to come back and tell us how it went! It is such valuable work and given you own personal experience, I know it is passionate work. Good luck Marie!

  2. I started blogging as a way to make sense of what I was going through and to see if this was happening to anyone else as well. I became too ill to work when I was 50 at the height of my career and my Cigna providers all told me my only problem was high anxiety. They prescribed Prozac. They never did any more testing than the requisite CBC. I had an undiagnosed intestinal blockage. This caused all kinds of secondary problems, so doctors didn’t know what to do within the 10-minute office visit. They chose to refer and I became a hot potato, then disabled. This gave me the time to start self schooling about all things medical and I used my blog to help me document what I was uncovering. It got complicated but I was able to uncover the root cause of my problem. Once on SSDI and Medicare (after exhausting every cent I had knocking on the doors of ill-informed doctors), I found an excellent colorectal surgeon at the Cleveland Clinic in Ohio. I became my own patient advocate and now have a great team of excellent providers. (Just not the money to pay for the care I need that Medicare won’t pay for.) I stopped blogging when I started getting proper medical care because I feared retaliation if I wrote something a doctor who was helping me didn’t like. Plus I wanted to see the results of the care and look at things in hind sight to get a better perspective. After a decade, I’m still on my quest seeking competent care but slowly getting there. Many patients who were going through similar experiences with the medical community contacted me over the years. Many were professionals who like me had the rug pulled out from under them and doctors who told them that this never happens to anyone else. My blog was therapy for me and the beginning of a connection to the hundreds of thousands of medical error victims in the U.S. I received a bird’s eye view of how much weight monied influences have on medical providers’ need to pay the mortgage.
    Anna Gardiner recently posted..It’s Time To Laugh and StretchMy Profile

  3. I’m a patient blogger sitting in on a meeting for Medicine X, which encourages the development of ePatients – and within that is blogging. Not only do I tell my doctors that I blog, I encourage them to read. I have something to teach, if only the providers were more willing to learn.

    • How lovely that you took the time to visit my site and leave feedback.
      I gained so much from the patient blogger panel.

      Learning starts with an open mind. I hope more doors are opened as more stories are told.

      Thank you for sharing.

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