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Twitter Empowers Patients to Seek and to Speak

Twitter

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:
#Patient
#PatientExperience
#HealthTalk
#patientengagement
#nurses
#digitalhealth
#HealthReform
#Healthcosts
#meaningfuluse
#ACO
#physician
#MedEd

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.

 

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