Twitter Empowers Patients to Seek and to Speak Out

The ability to write something meaningful in140 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 launched in March, 2006,has become the go to place . By the fall of 2013, there were over a billion registered twitter users who generate more than 500 million tweets daily. Since its inception 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.

The ability to retweet someone else’s tweet and to send messages to people based on tweets merely expands the reach. Currently SPM has over 3,000 followers on twitter and the Journal of Participatory Medicine has nearly 2,000 followers. We also conduct tweet chats.

For many patients, twitter has become a place to find resources and information on  most health-related topics.  For example when I was scheduled for a hip replacement, I found a comprehensive information packet tweeted by a hospital in the US 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.  All of this arms the engaged patient with the tools to make the right choices.

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 a 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 Twitter as a way to get out her message about what breast cancer is like and how to cope.

Clearly, Twitter poses unique challenges when it comes to healthcare, including issues of patient privacy and confidentiality. 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 looking for the content you are tweeting.  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.

The Twitter chat 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 a designated date and time. The chat is moderated by a host on Twitter and centered on a particular topic identified by a hashtag. Anyone who is interested can participate in a Twitter chat. This is 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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3 Responses to “Twitter Empowers Patients to Seek and to Speak Out”

  1. Susannah Fox says:

    My colleagues at the Pew Research Center have published a report looking at community types on Twitter.

    Here’s a short version of the findings:

    The six types of Twitter conversations

    I found it useful to think about some health-related communities and conversations.

    For example, I’d categorize #bcsm #medx #health2con #hcsm as “Tight Crowds” (and when I asked for additions, people tweeted back: #quantifiedself #LCSM #HCLDR #healthIT #meded #ptsafety)

    As the report authors note in the conclusion:

    “It is possible to imagine any number of ways that these insights could find application for those interested in using social media to promote causes, to engage the stakeholders who are interested in their organizations or missions, and to start or enter social media conversations that matter to them.

    For instance, those who run social media accounts for their organizations can explore how some of the conversational “styles” might be most applicable and useful to their work. Additionally, they might see how the “natural” structure of a conversation around their core topics could profit from adjustment. For example, a brand may want to cultivate community, or an in-group might want to open up to outsiders. Using these maps, participants can assess the type of social media network in which they participate and set a target for what they want their group to be like.”

    What do others think?

  2. We could actually say that Social Media (Twitter, Facebook, Google+ and more) and the internet helped a lot to make our world more connected.

    Learning and sharing goes infinite! :D


  3. Nancy Finn says:

    Thanks Susannah,

    The information from Pew is very interesting and helpful to frequent Twitter users. I think people often use twitter somewhat casually. It is important to think about the lasting impact that this social medium can have in advancing important ideas.Your report codifies the many opportunities and approaches to make that happen. It is unique, credible research that we should all give our attention to.

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