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Twitter Empowers Patients to Seek and to Speak


The  ability to write something meaningful in 140 characters, including a shortened URL, is the basis of Twitter. Over 500 million tweets go out every day to individuals who enjoy the simplicity, functional design, and speed of delivery that twitter offers, along with the ability to connect with others, collaborate and share ideas.

To say that Twitter is viral is to understate the facts. Twitter was launched in March, 2006. By the fall of 2013, there were over a billion registered twitter users who generate more than 500 million tweets daily.  A Twitter survey released on the last day of 2013 showed that 46% of the registered twitter users are on the site every day. In fact, Twitter has become the go-to place for many issues worthy of discussion about politics, commerce, entertainment, technology, healthcare.  The ability to retweet someone else’s tweet and to send messages to people based on tweets merely expands the reach.

Twitter’s open platform enables rapid dissemination of your message. Over time on Twitter there have been over 50,000,000 healthcare tweets; over 5,000 comments, and there are more than 1,000 common healthcare hastags. These tweets come from individuals, hospitals, physicians and other providers, health advocates, patients and caretakers.  They offer advice and resources on every imaginable health topic from information about procedures and surgeries, to public policy and population management, to patient commentaries.

For example when I was scheduled for a hip replacement, I found a comprehensive information packet tweeted by a hospital that described the procedure and compared hip replacement pricing at various institutions.

As a breast cancer patient I found information on just about every possible concern from ongoing clinical trials, to the latest medications, what foods to eat and why yoga was good for breast cancer patients.

Among the key uses of twitter for healthcare are:
Drug safety alerts from the FDA.
Exercise management and encouragement.
Weight management and support.
Daily health tips from authoritative sources.
Disease-specific tips and alerts.
Population health information.
Live tweeting about surgical procedures.
Tracking patient trends.
Checking hospital ratings with other health care consumers.
Patient sharing.

Recently, there was controversy, aired extensively in the press, and on twitter about Lisa Adams, an American metastatic breast cancer patient (@LisaAdams).  Lisa tweets hundreds of times each day about her experience with her disease and her treatment.  In her tweets she gets right into graphic descriptions of what it is really like to experience this disease, in the hope that this information will help others.

A UK journalist who interviewed Lisa, published an article in the Guardian indicting her for being so public about her disease.  This article caused a furor that occupied the media and the tweeting public for many days. Lisa’s story exemplifies an engaged patient who is using this social medium as a way to get out her message and connect with others.

Clearly, Twitter poses unique challenges when it comes to healthcare, including issues of patient privacy and confidentiality, HIPAA regulation,  and litigation concerns on the part of providers who are reluctant to share too much.

Using Twitter in healthcare also presents some technical issues.  For example,
Hashtags on Twitter (#…) are often misunderstood which can result in misuse of this tool for content discovery. Twitter hashtags for healthcare should help to categorize your content on a consistent basis and extend the reach of your tweets to others.  Hastags help expand your audience with like-minded individuals. The rule of thumb is to use no more than three hashtags per tweet. They should be those which are commonly recognized by others.

Some widely used healthcare hashtags are:

Twitter chats is another way to connect individual who have common interests in healthcare.  A Twitter chat is a live discussion that occurs for a half-hour to an hour at the same time every week, moderated by a host  and centered on a particular topic identified by a hashtag. Anyone who is interested can participate in a Twitter chat. They serve as another way to connect people, build thought leadership and provide a forum in which new ideas can germinate.

Twitter takes participatory medicine to a new level.  It is a no holds barred avenue for every patient, provider and caretaker to express ideas, share experiences and learn from the wealth of information that is available at no cost or obligation.


How to Find Good Health Information on the Web

It is a well established fact that empowered patients go to the web when they need to find information about health issues. Pew research indicates that 80% of Internet users search online for their health information and that translates into 59% of the total population of the United States looking online for health information for themselves or someone that they care for. These individuals are seeking information on symptoms, treatments, medications and general health such as food and safety issues. Many of these individual belong to Facebook and Twitter. This raises the questions:

Where do these individuals look for health information?  
Should they rely on heir social networks? 
What are some of the reliable, focused health sites?

There has been major discussions about Facebook recently, which now has over 800 million registered users and has an IPO pending. Facebook claims that there are approximately 175 million individuals who log in daily but these estimates vary widely. For the most part, Facebook visitors are connecting with friends on a variety of personal/social issues and are not specifically seeking health information. On the other hand there have been some remarkable stories of Facebook users finding organ donors and other health assistance and information through this social network. So if you are on Facebook and have a health need or a question, it never hurts to put it out there to your friends.

What about Twitter? Twitter claims to have 175 million accounts. Looking closely we find that of those, 56 million Twitter accounts follow zero persons and 90 million have zero followers. No information exchange there The rest include small numbers of individuals who follow significant numbers of accounts and a very small percentage who seek health information. Among the health seekers there are tweets and links to a very wide range of resources and issues. Therefore if you like to tweet and are an information junky twitter may be helpful.

There are social networks specifically devoted to patients who are looking for information and communities with whom to share their concerns and thoughts. They are worth checking out and include:

Web MD

The most popular of the general health information consumer web  sites is Web MD. Web MD has over 80 million unique visitors each month. The site offer just about everything a health care consumer needs, including a symptom checker, a comprehensive database of drugs and medications, a directory, women’s health information, and general health issues related to diet, fitness, recipes, life style, exercise and safety. The site includes pod casts, videos, tool kits, training materials, an e-newsletter, even a section on the health of your pets. There is a Web MD app that can be downloaded for all popular smart phones. Web MD does accept advertising so some of the content on the site could be influenced.

Mayo Clinic

The Mayo Clinic web site offers user friendly content and includes mainstream questions and concerns for consumers, health care professionals and educators. All of the information is vetted by health care professionals. Information on diseases and conditions, a symptom checker,. drugs and supplements, tests and procedures, healthy living as well as information on how to provide first aid on conditions from tooth aches to animal bites is available. There is no advertising on the Mayo Clinic site. is a popular, up-to-date source of free drug information online.  it is based on peer-reviewed accurate and independent data on more than 24,000 prescription drugs, over-the-counter medicines and natural products. 

Health Grades

At this site, patients can find doctors, dentists, and hospitals by specialty and location. The individuals and institutions are profiled and rated by patients.  The information is objective and reliable.

Department of Health and Human Services,

This gateway site links to a broad range of consumer health information resources and enables the consumer to search for medical, pharmaceutical and health information from over 1,500 websites, online publications, clearinghouses and databases on every conceivable health topic.  It is one of the hidden gems for health information on the web and for the health information seeker is well worth checking out.

There are many other excellent web sites that address specific diseases and issues. A more comprehensive list can be found in my book, e-Patients Live Longer, The Complete Guide to Managing Health Care Using Technology