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.
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It is good to know that this article spoke to you. I have spoken to a number of patients and caregivers who have had to manage a health crisis. It is not easy.
One key point I have learned is that “you are not alone” and sharing their stories I believe helps shine a light on some of our quiet and unspoken leaders/heros. You are in my thoughts.
Thank you for stopping by and taking the time to provide feedback.
Yes, you are right. The research did indicate that 6% of doctors do encourage blogging. I would suggest that these are the early adopters and are open to evolving their medical practice to align with today’s environment namely to include the social web as a communication vehicle. The whole topic of sourcing health information on the web is perhaps another article as so much can be said there. Ensuring that you are getting quality information is a very valid point.
Thanks again for continuing the conversation!
! must commend Red Deer Regional management for the superb reorganization of the hospital and the CLEAN, wide isles sans clutter.
The IMAGING department has always been exceptional.
All of the staff actually seemed relaxed and were smiling!
We have come a long way!
THANK YOU ALL.
Thank you for taking the time to read my post and share your perspective.
I tell my doctors what is wrong with me and what I want done about it, and so far they have all seemed receptive to having an informed patient who takes a serious interest in their own health.
I acknowledge the time pressures our general practitioners are faced with. It is reflected by the amount of time we have with our primary care providers.
At the same time, I personally would not describe patients as an “overburden” to doctors, as from my perspective, the patient’s well being is the sole purpose to their medical practice. The system is certainly strained and I think the feedback from this patient panel highlights another potential opportunity and vehicle to better understand how a patient is coping with their chronic illness. Actually after the patient panel’s presentation, a number of the GPs shared they were thankful for this information and will start to ask their patient if they blog so that they can better understand how they are progressing with their health challenge.
You highlight a good point about patients taking interest in their health which speaks to a level of accountability on the patient’s part. This point is well taken.
The problem is complex and the solution starts with open dialogue. Thank you again for continuing the dialogue. Stay healthy and well.
I use to have a family doctor where I use to have to wait at least a couple of hours before I was seen. Similar to your situation, the reason was due to my doctor being overbooked. Then 8 years ago, I changed GPs. My current doctor is very good and always on time. It is so refreshing and possible.
With regards to Patient (or Caregiver) Bloggers that I have crossed paths with, a number of them have serious- critical chronic health challenges. This might make a difference to helping those patients improving their well being. Without a doubt time is a factor.
Thank you for taking the time to provide feedback.
I agree that patient stories provides a key medical source for how we may better improve managing care especially for those with a chronic healthcare challenge. I believe the more we can facilitate collaboration between the health care consumer and the health care professional, the more we will progress in improving our currently strained healthcare system.
You raise a valid point. I think our model requires tweaking. How do we balance time with quality? It is a key question today and will become a even more critical one as the baby boomer generation become the primary healthcare consumer as they age.
Thank you for taking the time to share your perspective.
Private medical companies and right wing think tanks can create all the expensively produced propaganda videos they want but as long as Canadians look to the south and see American middle class families crushed by the high cost of so called "efficent" private health care, Canadians are going to vote in favor of their own fair system of universal health care.
I think there is a point in the video that should be acknowledged.
I currently host a talk show, Rise of The Patient, where I have interviewed Canadian patients and caregivers about their experience with the healthcare system. Surprisingly, I have learned that a number of Canadians have indeed crossed borders to get healthcare information and care to meet their needs. I had not appreciated how often this occurred until hosting the show. In one case, one of my guests reached out as far as Europe and got the help she needed. As a result, I personally would not cast this point aside, as it appears to be a growing trend.