Alzheimer’s MDchat with Gwen Richards and Libby Embry

On Tuesday, January 25, 2011 MDchat, in conjunction with Albert Einstein College of Medicine of Yeshiva University (@EinsteinMed) and Alzheimer’s Association, is proud to host a fireside chat on Alzheimer’s with Gwen Richards and Libby Embry.

MEET TWO BRAVE WOMEN

Alzheimer's Association logoGwen and Libby are members of the Early-Stage Advisory Group of Alzheimer’s Association and have graciously agreed to tell their stories about facing Alzheimer’s on our Twitter chat – the first of its kind, where Gwen and Libby will have the chance to take questions from physicians, nurses and the public through the medium of Twitter.

Gwen and Libby were diagnosed with younger-onset Alzheimer’s, but their stories about how and when they were diagnosed – and treated – are different, shedding light on the need for much better awareness of the course of this disease and its impact on the people with it, their loved ones and healthcare providers.

Their role on the Early-Stage Advisory Group has helped better inform both the Alzheimer’s Association and the medical community on how to improve patient-provider communications.

Here are their full profiles, courtesy of Alzheimer’s Association:

I spoke with Gwen and Libby, courtesy of Alzheimer’s Association, to give them a sense of how Twitter works, to explain the uniqueness of Twitter chats, to hear their stories and to get to know more about them. They are each wonderful and kind women, and I’m honored to work with them.

“With Alzheimer’s especially, Einstein and MDchat saw an opportunity to create a chat format that fills a largely unmet need: allowing people in the early-stages of the disease to tell doctors and other health care providers exactly how they want to be treated and included in their diagnoses and treatment plans,” said Paul Moniz, director of communications and marketing at Einstein.

The chat is also timely.

On January 20, 2011, an FDA advisory committee recommended conditional approval the use of a dye that detects brain plaque using PET scans. The reality is if the full FDA approves the use of PET scans for this purpose many more patients, including those in the earliest stages, could have a much more clear and credible understanding of what is causing their symptoms.

It’s important to recognize Gwen and Libby for the courageous leaders that they are. Their role on the Early-Stage Advisors panel has helped better inform both the Alzheimer’s Association and the medical community on how to improve patient-provider communications.

A NEW LEVEL OF TWITTER IN HEALTH CARE

This is an unique moment, one where we hope to advance communications among patients and providers in light of the technological changes of the 21st Century.

Since the dignity, safety and enjoyment of Gwen’s and Libby’s time are my my top priorities, I’ve outlined a few points and made a video concerning etiquette and process during the chat. Please review the points below and view the video prior to attending the chat.

Here are the basics of the format:

  • We’ll introduce Libby and Gwen. Since Gwen and Libby are not active users of Twitter, they will receive some help for the actual tweeting.
  • For the first half hour, @MD_chat will ask questions directed at Gwen and Libby and they will use those questions to tell their story (at this point, participants are asked to hold off questions until the second half)
  • Links to Alzheimer’s resources will be provided according to the pace of the chat
  • During the last half of the chat, participants will have the opportunity to ask Gwen and Libby questions, which @MD_chat will moderate.

We believe this is the first time such a chat has taken place on Twitter.

Why Twitter?

Twitter’s simplicity and intimate ambience provide an opportunity to reveal key points about a social object. It’s also a paradoxically democratic media: the dictatorship of the 140-character limit puts all users on content-parity.

Twitter is by no means a diagnostic nor treatment medium. That would be a misunderstanding of its usefulness in health care. Rather, it’s a propellent for social connections, brief sharing of content elsewhere and the exchanging of essential viewpoints and experiences.

Read MDchat’s About page for more on Twitter’s role here.

JOIN US FOR A NEW HOPE FOR ALZHEIMER’S CARE

We hope this chat reveals the promises and challenges facing health care in the 21st Century. Nurses, physicians and the public do need better ways to understand each other. Twitter’s far from a solution. Rather it’s a wing for gently lifting hope of better care.

The hashtag is #MDchat and you can follow along on TweetChatTwitter Search or the Twitter client of your choice. If you’re new to Twitter or Twitter chats, here’s a video tutorial I did for RNchat (just substitute MDchat).

This special fireside MDchat on Alzheimer’s will be held on Tuesday, January 25 at 9pm Eastern. Feel free to participate respectfully, or simply follow along the chat.

@PhilBaumann@MD_chat@EinsteinMed – @HealthIsSocial

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9 responses to “Alzheimer’s MDchat with Gwen Richards and Libby Embry

  1. Pingback: Tweets that mention Alzheimer’s MDchat with Gwen Richards and Libby Embry | MDchat -- Topsy.com

  2. Pingback: Twitter Chat on Alzheimer’s – A New Hope

  3. Pingback: Tweets that mention Alzheimer’s MDchat with Gwen Richards and Libby Embry | MDchat -- Topsy.com

  4. Hi Phil,

    Congrats with creating this twitter chat format! Love the fireside part, it’s going to be exciting to see how it plays out on twitter.
    I know there are risks involved doing this on Twitter (totally public, less control), however what you’re doing is the right thing. We need some risk taking in order to make a difference.

    It’s going to be very exciting observing this chat tonight!

    • Hi Audun

      I think this will be an opportunity for these two women to voice themselves and be heard.

      Too often, when people are diagnosed with Alzheimer’s they feel left out of the process. That has to change, and my hope is that this chat will – even if in some small way – raises awareness of the need for better and more humanized care.

      Cheers!

      Phil

  5. Hi Phil!
    Thanks a lot for organizing this tweetup. It was a wonderful experience reading Libby´s and Gwen´s stories, listening to them. We have a lot to learn from them and other patients with Alzheimer´s.
    Plus it was a great way to use twitter :)

  6. Pingback: Transcript of MDchat on Younger-onset Alzheimer’s | MDchat

  7. Pingback: Transcript of Alzheimer’s MDchat

  8. alzheimer disease is the next cancer

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