It is no secret that Social Media has dominated and revolutionized the internet and our relationships. It has also changed the way we consume, create, curate and share information. Much has been said and debated on the pros and cons of social networking sites likes Facebook, Twitter, Linkedin and more. There have been many success and horror stories but there are a few examples that stand out. Wikipedia.com for example has become one of the most trusted online encyclopedias and is a model for how social interactions of complete strangers can actually lead to very good quality knowledge sharing platforms. Now this model is being applied to the online health community. We all know how overwhelming information can be when searching a disease or a condition. There are thousands of websites with false or exaggerated information about miracle cures and supplements.
Many patients fall victim to these inaccurate marketing schemes and pay big money to buy the advertised products or supplements hoping for a quick cure or relief. The unfortunate truth is that modern medicine continues to frustrate and fail many patients in terms of finding and treating the source or the real cause of a disease and rather it focuses on managing symptoms using drugs that often have their own bad side effects and symptoms. The healthcare system often sees patients just as consumers or just diseases and the human element is lost in this complex system.
That said, the healthcare enterprise is rather a complex one because of its many stakeholders: the patient, the doctor, insurance companies, pharmaceuticals, medical device companies, specialists and state and federal governments. These stakeholders themselves have their own various influences. For example, patients are influenced by their own fears and emotions as well as their family and friends, while pharmaceuticals are influenced by FDA regulations, stockmarket, shareholders and own research results. Therefore it’s easy to see how a patient’s needs can get lost or overlooked. Even if all parties have the best of intentions and a cure for cancer for example is found today, it will take at least 10 years for the drug to go through the FDA approval process and become available to patients in need.
This brings us to social media again and Web 2.0. Social media connects people (patients) and hence their experiences. When it comes to health, first hand patient experiences recorded as they happen are priceless to researchers and other patients. Until now patient experiences have been shared through various health forums with not much organization or actual analysis of patient feedback. Hence, it’s very easy to get lost reading forum after forum about a certain disease and feeling overwhelmed and anxious. Fortunately new health related social networking websites are emerging that categorize patients by their condition or disease and analyze each patient’s shared data (disease severity, duration, treatment, drug side effects, alternative therapies, life style changes). As such they are able to show various trends and patterns for each disease. For example, a 20 year old female can see what kind of medication or life style changes worked best for other 20 year old females suffering from migraines. This way she does not have to read through many forum postings from patients with completely different characteristics who also suffer from her condition.
Online patient communities such as PatientsLikeMe.com and CureTogether.com are currently leading the way in this space and have helped many patients by connecting them to others just like them. Through these sites patients submit their conditions, symptoms and remedies and this data is quickly analyzed for specific parameters leading to informative insights. Now, each patient has access to hundreds of hours of firsthand experience from others just like them so he or she does not have to try all the different supplements, cures, diets, exercises, etc., that can be found on many website claiming to have the cure. Obviously more improvements can be made but I strongly believe we are on the right path, the rightest path we’ve been on since the failure of modern medicine to see patients as humans and not just a disease or a consumer.
More on PatientsLikeMe.com and similar websites can be found on their website or the following articles:
http://www.technologyreview.com/biomedicine/25276/?a=f&FB=T
http://www.nytimes.com/2010/03/25/technology/25disable.html?_r=1
http://nursingassistantguides.com/2009/25-excellent-social-media-sites-for-your-health/
http://nursingassistantguides.com/blog/
Be well, stay health, stay away from stress and don’t be afraid to love.
Many patients fall victim to these inaccurate marketing schemes and pay big money to buy the advertised products or supplements hoping for a quick cure or relief. The unfortunate truth is that modern medicine continues to frustrate and fail many patients in terms of finding and treating the source or the real cause of a disease and rather it focuses on managing symptoms using drugs that often have their own bad side effects and symptoms. The healthcare system often sees patients just as consumers or just diseases and the human element is lost in this complex system.
That said, the healthcare enterprise is rather a complex one because of its many stakeholders: the patient, the doctor, insurance companies, pharmaceuticals, medical device companies, specialists and state and federal governments. These stakeholders themselves have their own various influences. For example, patients are influenced by their own fears and emotions as well as their family and friends, while pharmaceuticals are influenced by FDA regulations, stockmarket, shareholders and own research results. Therefore it’s easy to see how a patient’s needs can get lost or overlooked. Even if all parties have the best of intentions and a cure for cancer for example is found today, it will take at least 10 years for the drug to go through the FDA approval process and become available to patients in need.
This brings us to social media again and Web 2.0. Social media connects people (patients) and hence their experiences. When it comes to health, first hand patient experiences recorded as they happen are priceless to researchers and other patients. Until now patient experiences have been shared through various health forums with not much organization or actual analysis of patient feedback. Hence, it’s very easy to get lost reading forum after forum about a certain disease and feeling overwhelmed and anxious. Fortunately new health related social networking websites are emerging that categorize patients by their condition or disease and analyze each patient’s shared data (disease severity, duration, treatment, drug side effects, alternative therapies, life style changes). As such they are able to show various trends and patterns for each disease. For example, a 20 year old female can see what kind of medication or life style changes worked best for other 20 year old females suffering from migraines. This way she does not have to read through many forum postings from patients with completely different characteristics who also suffer from her condition.
Online patient communities such as PatientsLikeMe.com and CureTogether.com are currently leading the way in this space and have helped many patients by connecting them to others just like them. Through these sites patients submit their conditions, symptoms and remedies and this data is quickly analyzed for specific parameters leading to informative insights. Now, each patient has access to hundreds of hours of firsthand experience from others just like them so he or she does not have to try all the different supplements, cures, diets, exercises, etc., that can be found on many website claiming to have the cure. Obviously more improvements can be made but I strongly believe we are on the right path, the rightest path we’ve been on since the failure of modern medicine to see patients as humans and not just a disease or a consumer.
More on PatientsLikeMe.com and similar websites can be found on their website or the following articles:
http://www.technologyreview.com/biomedicine/25276/?a=f&FB=T
http://www.nytimes.com/2010/03/25/technology/25disable.html?_r=1
http://nursingassistantguides.com/2009/25-excellent-social-media-sites-for-your-health/
http://nursingassistantguides.com/blog/
Be well, stay health, stay away from stress and don’t be afraid to love.
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