Tag Archives: #diagnosis

Patients Created Crowdsourcing

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Crowdsourcing is a phenomena that was coined in 2005 by Jeff Howe and Mark Robinson, editors at Wired magazine. Their initial definition was specific to how businesses at that time were were leveraging the internet to outsource work to individuals.

3 years later, Daren C. Brabham was the first person to use the term in a scholarly article. He also wrote a book by the same name, Crowdsourcing, in 2013. (Jeff Howe wrote a book by the same title earlier in 2009: find it here)

Daren’s definition in his paper was the following:

Crowdsourcing is a type of participative online activity in which an individual, an institution, a non-profit organization, or company proposes to a group of individuals of varying knowledge, heterogeneity, and number, via a flexible open call, the voluntary undertaking of a task. The undertaking of the task, of variable complexity and modularity, and in which the crowd should participate bringing their work, money, knowledge and/or experience, always entails mutual benefit. The user will receive the satisfaction of a given type of need, be it economic, social recognition, self-esteem, or the development of individual skills, while the crowdsourcer will obtain and utilize to their advantage that which the user has brought to the venture, whose form will depend on the type of activity undertaken.

I believe that healthcare was the original pioneers in “crowdsourcing.”

I can remember being a small boy, and my aunts, uncles, and grandparents always calling my mother, a nurse, and asking her about their symptoms. They would discuss their aches, pains, coughs, phlegm, and number of days with my mother.

After seeing their physician, they again would call my mother and ask her about what the doctor told them. They would ask her questions about the diagnosis, the medications, the doctors recommendations.

As I moved into my own clinical expertise in oncology, I have had several family members, friends, and professional colleagues call and ask me the same types of questions.

I started to think, patients have always done crowdsourcing for their diagnosis. Healthcare just never had a formal name for it. (full disclosure, I give the “hat tip” to Dr. Krishnaraj for planting the thought for this post in my mind)

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In the days before the internet, it took place via a phone call. We would wake up, not feel well, pick up the phone, call our trusted friend, talk about how we are feeling, and they would weigh in with their opinion on your diagnosis.

We would go to the store, buy some medicine, and see what happens. Maybe after a few days we finally go see a physician. As soon as we arrived home, we would pick up the phone and share with the diagnosis and recommendations with our friend.

Original Crowdsourcing.jpg

Today, it is even faster. We have access to more people. Instead of being able to call and talk to one person, we can instantaneously go to Dr. Google, input our symptoms, and come up with a self diagnosis in seconds.

We can now turn to blogs, websites, Facebook, Twitter, Instagram, Pinterest, and many other sites to connect with people and get their opinion. We can connect with medical societies, hospitals, online physicians, and quacks. We can even connect with children posing as medical professionals.

Modern Crowdsourcing.jpg

We can input out our signs and symptoms into a search engine and easily receive a diagnosis.

The diagnosis may not be correct, but we can receive one none the less.

We want an answer to our “What” question. (post here: Diagnosis Is King) Since we have immediate access to the internet, friends, family, and colleagues, we crowdsource their knowledge to alleviate our own anxiety.

To arrive at an answer to the “What” question.

Even though magazines like Wired, Inc, and the cool startup culture of Silicon Valley are known for their crowdsourcing endeavors, patients have always used “crowdsourcing” when it relates to their diagnosis.

Patients created crowdsourcing. Healthcare just never acknowledged it.

As I mentioned during the #JACR discussion, if the “insiders” of healthcare can begin to leverage technology to disseminate and leverage all of the medical knowledge globally, in a crowdsource manner, maybe we will bend the cost curve. Increase access, improve wait time, and decrease patient anxiety.

Maybe, just maybe, healthcare “insiders” will finally learn from what is already happening outside the four walls of their own organizations….

Patients always have, are today, and always will crowdsource their diagnosis.

Don’t ignore the crowd. The crowd is full of your patients. Join the crowd. Listen to understand, not to respond. The crowd will tell you what they need.

As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM or follow me on twitter @cancergeek

~CancerGeek

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No, Sorry, Next Hospital Please

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Scenario: 66 yo male with a recent history of severe blood clotting causing hospitalization in the ICU for 3 weeks, pulmonary embolism, and the amputation of one leg below the knee. Patient has been discharged and living at home caring for self for past 6 months. (all within same year)

Patient recently fell due to poor weather conditions. The patient experienced a fracture of the hip as well as a fracture of the femur in the amputated limb. Due to previous history it was recommended to transfer patient from local hospital to a larger facility.

After 3 days, many phone calls, various referrals to orthopedic surgeons, and rejection by 5 hospitals, the local facility was able to find an accepting hospital willing to take his case.

I was asked why was it so difficult to find a place to take him? Was it due to the clotting? Was it due to his history of pulmonary embolism? Was it due to the complex resources?

I asked which hospitals his local care team reached out to make transfers?

The referrals were made to the following: (3) Level One Trauma Centers, (2) Level Two Trauma Centers, and (1) Level Three Trauma Center.

The facility that finally accepted him for care and he was transferred to was a Level Two Trauma Center. (number 4 on my map)

Even with a well documented and recent history and physical, a thorough diagnosis (obviously I did not include everything), and a well engaged patient, his experience is less than perfect.

As a matter of fact, the patient was transferred to the hospital furthest away from his home, his support system, and family. It also happens to be a facility that is not the highest level trauma facility.

In the above type of situations we usually are not in the capacity to drive our own care. We usually are at the mercy of the healthcare system to plug us into the right facility based on our diagnosis.

In the above scenario, IĀ  question if each facility made their decisions based on what was best for the patient, or did they also consider their own self interests? Did the risk for complications, readmission, ICU, length of stay, and other scenarios play into the decision? Did the risk for reimbursement and penalties impact their decision to accept or pass on his admission? Did the facilities decide on their ethics?

All I can do is be thankful that a facility admitted him, know he is in good care, and other than the initial wait and long ambulance ride, his overall patient experience is good to this point.

However, his healthcare experience outside of the hospitals walls is poor.

Feel free to comment and add your own perspectives and questions.

As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM or follow me on twitter @cancergeek

~CancerGeek