11/23/2012 08:24 EST | Updated 01/22/2013 05:12 EST

What Patients Aren't Telling Their Doctors


I recently attended the Medicine 2.0 congress via their webcast and I found the patient bloggers panel as 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 had patient blogs and the reasons why they 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 40 per cent of patient bloggers shared their patient blogs with a healthcare provider and that most (90 per cent) shared their writing with friends and family. The patient panel revealed that the reasons for not sharing their blogs with their doctors were filled with mixed emotions and included:

1. Patients have a story to tell.

2. Patients need an outlet for expression.

3. Patients need to regain a sense of inclusion and purpose.

4. Patients need to connect with others who 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 vehicle 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 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 health care 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 health care 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 physicians' offices.

The hard reality is that health care 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" health care management style i.e. 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. I also believe that collaboration would provide another option of education for the health care provider.

The good news is that the research did show that 6 per cent of the clinicians surveyed, did encourage patients to blog. A small indicator of the early adopters and those leading the way for change in the medical practice.