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MPN Patient Shares Survivorship Tips, Recognizing Social Media Toxicity

MPN Patient Shares Survivorship Tips, Recognizing Social Media Toxicity from Patient Empowerment Network on Vimeo.

 Myeloproliferative neoplasm (MPN) patient Julia Olff has experienced the positive and negative aspects of online information and social media in her search for support. Watch as she shares her support journey with what she found helpful and what became toxic in her efforts to gain MPN information and emotional support.

See More From the MPN TelemEDucation Resource Center

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Transcript:

Julia Olff:

So, I think social media has many advantages, especially when you have a rarer illness like myelofibrosis. I was diagnosed with myelofibrosis in 2008, and there really was not a lot of good information yet about the illness online, and I had not met anyone who had my myelofibrosis, so I really appreciated being able to go to places like Facebook in their earlier days, with my illness, to find organizations to find other people with the illness, I think learning from other people in terms of their strategies for coping with her illness, tips for dealing with side effects, and other people can answer questions about the physicians and nurses just can’t because they don’t experience it directly, how something feels sort of setting your expectations for a treatment can be really helpful, and I think that’s where social media really shines, is creating community and connecting it to others and learning from peers. The downsides though, I think, are the amount of opinion, unfounded opinion, not sourced opinion that exists that I saw on social media, and then the angry vitriol or kind of disagreement that I found really harmful to my mental health.

I’m always trying to balance how I feel with my mindset, and there are times that that’s easier to do, and times that that’s harder to do, so when I’ve been particularly unwell or just had a hospitalization, I feel like I have…I’m more vulnerable, I have less of a threshold for negativity and angry commentary, and that you can find that on social media, unfortunately, and then, of course, there’s… what I find troubling or not helpful are the opinions of other people who relay people who don’t necessarily have the depth of credible information about a treatment study, what’s right or wrong as it relates to the latest in myelofibrosis treatment, and treatment advances. So it’s helpful to hear about what it was like to have a stem cell transplant from someone with myelofibrosis, but yet I can’t rely on an individual for credible scientific medically sound information. So I think for me, I actually deleted my Facebook account in 2020, but I did keep my Twitter account because there I follow physicians’ epidemiologists, and of course, MPN organizations so that I can know about upcoming webinars or patient events, or new treatments. So that’s been really helpful.  

Patient Advocacy: Ten Tips For Twitter Success

I love Twitter. It’s one of my favorite places on the Internet, and one of the few sites I visit more than once a day.

I’ve been a Twitter user for over a decade and in that time I’ve found it has been one of the best places on the Internet to advance my advocacy efforts. From crowdsourcing quotes and opinions, to keeping current with medical research, Twitter continues to be my go-to source for information and collaboration.

Learning Twitter is like anything else in life. The more you use it, the more you learn, and the better you get at using it.

But you don’t have to spend years learning how to become a Twitter pro.

Today I am going to share with you some of my best tips to shortcut your journey to Twitter success.

1.Make Your Profile Stand Out

People are highly visual, and the first thing we notice in a Twitter profile is the picture and the bio.  Most profile images are now mainly viewed on mobile devices. This means that the image itself has to be recognizable in smaller dimensions than it appears on a desktop or laptop screen. These smaller images are known as ‘thumbnails’. For your image to work as a thumbnail, your face must predominate in the original image. Think of framing your picture around your head and shoulders.

Below you’ll find the recommended guidelines for a Twitter thumbnail:

  • Square Image 400 x 400 pixels
  • Maximum file size 5 MB
  • Image types include: JPG, GIF or PNG

You also have an opportunity to personalize your Twitter profile by uploading a custom header image (similar to a Facebook cover photo).  This is prime real estate on Twitter so make the most of the opportunity to bring more creativity and authenticity to your account (for example you might use a picture of yourself holding a sign with a hard-hitting message).

Here are the recommended guidelines for header images:

  • 1,500 x 500 pixels
  • Maximum file size of 5 MB
  • Image types include: JPG, GIF or PNG

Insider Tip:  Go to Canva.com to find a template to create your Twitter header image. Canva templates are already sized to the right dimensions.

2. Craft Your Bio

Alongside your profile image, your bio is usually the first thing people see when deciding whether to follow you on Twitter.  However trying to capture your passion and experience to fit Twitter’s 160 character limit for a bio can be a challenge.  You won’t be able to express all you want to say, so think of this as the opportunity to provide a brief snapshot of who you are and what you do.

Here are some things to consider when it comes to crafting your Twitter bio:

  • How will you describe yourself to pique people’s interest to learn more about your work?
  • Which of your accomplishments will you highlight in your bio?
  • Is there a project you are currently working on? Or a campaign you are part of? Can you link to it in your bio?
  • Are there disease-specific or campaign hashtags you can include?

Insider Tip: Content posted on Twitter is indexed by Google so it makes sense to use keywords in your bio and in your tweets. Think about things that people would search for to find you — a good tip is to look at the Twitter accounts of other advocates in your disease area to see which keywords they’re using.

3. Follow The Right People

If you’re new to Twitter begin by following relevant organizations – non-profits, patient groups, hospitals, etc. Twitter will then auto-suggest people who also follow this account for you.

Follow healthcare professionals, researchers and patient advocates who are tweeting about issues related to your illness. The easiest way to find conversations of interest is to click the native search facility at the top of your Twitter screen and enter disease-specific keywords and hashtags.

Insider Tip: It’s a good idea to organize your followers into Lists. You can create your own Lists or subscribe to Lists created by others.  New to Twitter Lists?  Follow my step by step guide to creating Lists at https://bit.ly/2OOEl18

4. Create Twitter Threads

A thread on Twitter is a series of connected Tweets from one person. With a thread, you can provide additional context, an update, or an extended point by connecting multiple tweets together. When used well, threads are a powerful way to illustrate a larger point.

Learn how to create a Twitter Thread at https://bit.ly/3sktRoa

5. Shorten Your URL Links With Bit.ly

A URL shortener is an online tool that converts a regular URL (website address)  into an abbreviated version that is around 10 to 20 characters long. Use a third-party tool like Bit.ly.com to help you do this.

Insider Tip: Bit.ly does more than just shorten links. You can use it to see how your links are performing in real-time, with insights that show you which content or channel is working best for you, including total clicks and top referring social channels.

6. Use Hashtags Wisely

Hashtags tie public conversations from different users into a single stream, allowing you to connect more easily with existing conversations and discover new people who are tweeting about the healthcare topics you are interested in.  Twitter’s own research into hashtags shows that there is significant advantage to using them. Users can see a marked increase in engagement simply by using relevant and popular hashtags in their tweets.

Insider Tip: Don’t over-do hashtags.  When #you use #too #many #hashtags your #tweet looks like #spam.  Aim to have no more than 2-3 hashtags per tweet. Research shows that tweets with more than two hashtags actually see a drop in engagement.

7. Add More Images To Tweets

Adding visual appeal to your tweet is a smart way to make your content stand out among a sea of content.  You can add up to 4 images to your tweets  – all you have to do is click on the photo icon after you have added your first image, then add up to 3 more images.  Take advantage of this and create a carousel of images to draw a reader’s eye.

Insider Tip: Want to add a GIF to your tweet? Twitter has made it very easy to add GIFs by doing all the work for you within the tweet box. All you have to do is choose an appropriate GIF from the drop-down menu or search for a specific genre in the search box. Photo and GIF attachments do not count towards the character limit in a Tweet. Photos can be up to 5MB; animated GIFs can be up to 5MB on mobile, and up to 15MB on the web.

8. Develop a Regular Posting Schedule

On Twitter, the average lifespan of a tweet is 18 minutes. This means that the more you post, the more of an opportunity you have to get seen.

Insider Tip:  Use a scheduling tool like Buffer or Hootsuite to schedule your updates to reach more people, more often.

9. Join a Twitter Chat

A Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. Popular Twitter chats include #bcsm; #lcsm; #gyncsm; #patientchat.

Insider Tip: There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project at Symplur.com.

10. Pin Your Best Content

Use the “Pinned Tweet” function to showcase your most valuable content at the top of your Twitter profile. In the past, Twitter typically only allowed viewers to see posts in a sequential timeline which meant that your most important or relevant content quickly got lost in the fast-moving Twitter stream. To solve this issue Twitter now allows you to “pin” a tweet (i.e. keep it placed at the top of your newsfeed) giving you more editorial control on what a viewer will see first when visiting your page. Follow this link to learn how to pin a tweet: https://bit.ly/3ggn6RI

Insider Tip: Set a reminder to update your pinned content so it doesn’t appear out-dated. Change the content regularly to highlight the most current campaign or project you are involved with.

Wrapping Up

The key to success with any form of social media is to work smarter not harder. These tips will help you increase your follower count, reach a wider audience, and boost your engagement on Twitter. Implement these tactics the next time you post on Twitter and watch your engagement start to climb.

Here’s to your Twitter success!

Don’t Be An Egg Head! Ten Twitter Tips for Patient Advocates

Last month Twitter announced it is now possible to filter out accounts with the default (egg) profile image, so that they don’t appear in your notifications. While this change is part of the company’s efforts to deal with abuse on the platform, it is also a timely reminder to those Twitter users who still have accounts without a personal picture to add one.   It is still surprising to me the number of new (and not-so new) Twitter users who are tweeting from an account with no clearly identifiable name, bio, or profile picture.

Twitter is a powerful tool to help raise awareness of your cause, keep current with research, amplify your advocacy activities, and build collaborative relationships. A study published by researchers from Microsoft and Carnegie Mellon University, “Tweeting Is Believing? Understanding Microblog Credibility Perceptions,”  analyzed how users assess Twitter credibility. The study found that users represented by the default Twitter icon, or a cartoon avatar, are perceived as significantly less credible than users with a personal photo.

Patient advocates who are looking to change hearts and minds should consider the image they present online. What will people’s first impression be of you? What might make them decide to follow you? What kind of content should you tweet to engage your followers?  Whether you are a Twitter newbie, or you have been on Twitter for a while, these ten tips will help you develop your professional identity on social media.

1. Perfect Your Profile

The first and most fundamental thing to understand about Twitter is that it is a conversation. Would you approach someone at an event and not introduce yourself first? Would you keep your face hidden from view while you hold a conversation? And yet this is precisely what some users do when they set up their Twitter accounts. Many Twitter users will not follow accounts without a profile picture on the assumption it is a fake account, and now with these new changes it will be easier than ever to weed out these accounts.

Let’s start with your avatar. An avatar is something used to represent you in an online environment and on Twitter it is the small thumbnail picture that appears alongside your tweets in the feed.  Since the thumbnail is so small (400 x 400 pixels), choose an image that is clear and easy to see, like a head and shoulders shot, or your organization’s logo.

You also have an opportunity to personalize your profile by uploading a custom header image, similar to a Facebook cover photo.  Use this opportunity to bring more authenticity to your account, for example you might use a picture of yourself holding a sign with a hard-hitting message.

2. Craft Your Bio

Trying to capture your passion and experience in Twitter’s 160 character limit for a bio is a challenge.  You won’t be able to express all you want to say, so think of this as a snapshot of who you are and what you do.  How will you describe yourself to pique people’s interest to learn more about your work?  Which of your accomplishments will you highlight? Is there a project you are currently working on? Or a campaign you are part of?  Use campaign hashtags, and link to other relevant Twitter accounts to highlight your online community.

Bonus Tip: When writing your professional bio, be brief but authentic, and make your core expertise and experience immediately clear.

3. Find People to Follow

Begin by following your organization’s Twitter account. Twitter will then auto-suggest people who also follow this account for you. Next draw up a list of organizations and groups related to your area of interest. Go to their website and click on the Twitter follow button if they have one. When reading blogs written by other patients check to see if they have included their Twitter profile.

Follow healthcare professionals, researchers and patient advocates who are tweeting about issues related to your illness. The easiest way to find conversations of interest is to click the native search facility at the top of your Twitter screen and enter your keyword or hashtag (words or phrases prefixed with a “#” sign).  You then have a further option of performing an Advanced Search. This allows you to narrow down your search using parameters such as specific keywords, language, people, location, and date range.

Bonus Tip: It’s a good idea to organize your followers into lists. You can create your own lists or subscribe to lists created by others. I use a tool called Listly to curate healthcare lists – you can view my epatient list here.

4. Engage Your Followers

The more people who follow you, the more you can amplify your content and increase your social shares.  As you attract followers to your account you will need to think about how you are going to keep them engaged over the long term.  How will you maintain trust and credibility and give people a compelling reason to keep following you? Take the time to acknowledge when a person follows you online or re-shares your content.  Keep your eyes open for those who retweet you often or share your blog.  Thank them sincerely for sharing your content. Show your followers you are interested in their tweets too by retweeting and favoriting their updates.

5. Share Interesting Content

If you want people to share your content, you need to give them something worth sharing. The New York Times did a fascinating study on the psychology of social sharing a few years ago. It showed that people want to connect to other like-minded people, they want to support issues they care about, and above all they want to share content that will be useful for those in their network. Create content that your audience will want to share because they believe it will be of value or interest to others. Don’t just add to the online chatter. Before you post something, stop and ask yourself would this pass the re-share test? Why would I want to click on this information? Would I want to share it with my friends/family?

6. Use Hashtags Wisely

A hashtag on Twitter is a very popular way of creating and monitoring a conversation around a particular topic and can be a great way to engage your followers. To create a hashtag, simply place # before a word.  Twitter’s own research into hashtags shows that there is significant advantage to using them. Individuals can see a marked increase in engagement simply by using hashtags. A word of warning though – when #you use #too #many #hashtags your #tweet looks like #spam. Don’t use more than 2 hashtags per tweet. Research shows that tweets with more than two hashtags actually see a drop in engagement.

7. Live Tweet

A great way to add value for your community is to live tweet from conferences and events. Twitter is fantastic for taking the content of conferences beyond the walls of a conference venue. You can follow along on Twitter using the conference hashtag and share your insights and key highlights with your followers who cannot be there.

Curate the tweets from the event using Storify – a tool which gathers social media updates and media from across the web to build a social story. You can also notify people that their tweets have been curated in the Storify – which is a great way to publicly recognise your followers and attract new followers.

Bonus Tip: If you’re new to Storify, check out my step-by-step guide to creating your first story.

8. Develop a Regular Posting Schedule

In order to stay in front of your audience’s eyes you need to post consistently. Create a social media calendar using a simple Excel spread sheet so you can map out in advance upcoming holidays and cause awareness days to tweet about. When you have created your calendar, you can use a Twitter scheduling tool, like HootSuite, Buffer or Tweetdeck to schedule your tweets in advance. The internet is global and if you want the spread of your content to reach further than your own backyard, you need to hit multiple time zones. Scheduling tweets allows you to reach followers when they are most likely to be online (even if you aren’t there at the same time) and allows you to maintain a regular and consistent online presence.

Bonus Tip: Follow this link to learn more about this tip and download a social media posting calendar.

9. Join a Twitter Chat

A Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. In addition you will find past transcripts of chats on the website. This is also a useful resource to find Twitter users to follow.

Bonus Tip: It’s good Twitter etiquette to let your followers know your tweet volume is about to increase as you join the chat.

10. Have Fun!

If you’re new to Twitter you might be feeling a bit overwhelmed at all this advice. Remember you don’t have to do everything right away. Go slowly at first. Take one of these tips each week and put them into action.  Soon you’ll find you are becoming a Twitter pro, ready to teach others the tips and tricks you have perfected. Above all, have fun with Twitter. It’s a super place to network and learn, but it’s also a fun place to make new friends.

Tweetchats: What Are They? How Can I Participate?

A Tweetchat or a Twitter Chat is a live event where a group of Twitter users come together to discuss a predetermined topic. To sift through all of the world’s tweets a designated hashtag (#) is used for each tweet contributed to the conversation. Each chat has a set start time, time limit, and a host that moderates.

The moderator asks questions to prompt responses from the participants and helps get the conversation going/moving along. Cues are usually used such as T1, T2, and T3 for topics or Q1, Q2, and Q3 for questions 1 through 3 to provide context and clarity to both questions and responses. To participate in the chat, all you have to do is include the hashtag in your tweet. Websites such as tchat.io can help by filtering out all other tweets so you can focus on discussing one topic and it automatically adds the hashtag to your tweets.

Now that you understand the basics, you might wonder why you should participate. This type of platform allows you connect with a larger group of patients or experts who understand and know first hand what you are going through. In addition to the social connection benefits, tweetchats can be educational. You can learn about different treatment options, clinical trials, etc. You can find a list of all the different healthcare tweetchats here.

References:

http://www.forbes.com/sites/stevecooper/2013/09/30/the-ultimate-guide-to-hosting-a-tweet-chat/#28c902e364b3

https://blog.bufferapp.com/twitter-chat-101

5 Simple Steps to Become a Twitter Pro

When it comes to using Social Media, especially twitter, there is no need to worry. It is a lot easier than you think. If you follow these 5 simple steps, you can become a twitter professional in no time.

1) Create an Account

Go to www.twitter.com, and create a free account by clicking the ‘Sign Up’ button in the top right of the page. Enter your name, phone number or email, and password in the space provided. Then, chose a user name which will become your twitter handle. (See definitions below.)

2) Finish Your  Profile

  • After you have created your account, you will be prompted to add your areas of interest. The areas you choose will then be complied into suggestions for whom you could follow. You may either choose to follow all, some, or none of these accounts.
  • Next, you can upload a photo of yourself to your profile.
  • Afterwards, ‘People you may know’ appear as more suggestions for people to follow. This list is compiled from contacts from your email or phone address book.

3) Learn the Twitter Lingo

  • Follower – You “follow” other users to see their updates on your home page, and they can follow you to see yours.
  • Handle – A “handle” is your twitter username. This is the name people will identify you as. (Example: @power4patients)
  • Hashtag(#) – A “hashtag” is used in front of keywords to provide context, and to make them easily searchable for people looking for information on a specific topic. (Example: #PowerfulPatients)
  • Mentions(@) – You use the “@” sign directly in front of someone’s user name/handle to direct your tweet towards them. It will also appear in their “@Mentions” section on their Twitter account. (Example: Hey! @power4patients check this out!)
  • Retweet (RT) – When you come across a tweet you like and want to share with your followers, you can click the “retweet” button
  • Tweet – A tweet is the message you send out to your followers. Each tweet must be 140 characters or less
  • Tweetchats – Tweetchats are arranged meetings often occurring regularly on a specific time/date. A moderator oversees the conversation and focuses it on a specific topic. You can follow these chats or participate by searching or tweeting with the designated hashtag.
  • Reply – A reply is a response to another user’s Tweet that begins with the @username of the person you’re replying to. You can reply by clicking the Reply button on a Tweet.
  • Like – Likes are represented by a small heart. They are commonly used to show appreciation for a Tweet. You can see someone’s likes by visiting their profile, and your likes are also visible on your profile.

4) Composing Your First Tweet

A tweet may contain photos, videos, links, and up to 140 characters of text. You begin by clicking the icon button or typing directly into the ‘What’s happening?’ text bar. Don’t forget to use hashtags (#) to provide context or mentions (@) if you directing a tweet towards someone.

You can also shares articles you find on your favorite sites, such as New York Times by clicking on the Twitter icon. (See example below.) When you click the icon, a tweet will automatically generate making it easy to share with your followers.

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5) Search

Using the ‘Search Twitter’ feature in the top right of your homepage (See image.) allows you to look for specific tweets, users, or ongoing conversations.

Screen Shot 2016-02-19 at 12.24.26 PM

References

www.sproutsocial.com/insights/twitter-term-definitions

www.support.twitter.com

#ASH15 Hosts Discussion on Social Media

At the recent American Society of Hematology annual meeting, Joseph Mikhael, MD, MEd, FRCPC (@jmikhaelmd) hosted a panel discussion on the importance of social media . The panel included Michael A. Thompson, MD PhD (@MTMDPhD), Cindy Chmielewski, BA (@MyelomaTeacher),  Navheet S Majhail, MD, MS, (@BldCancerDoc), Laura C. Michaelis, MD, (@lauracmichaelis), Jeff Szer, MB, BS, FRACP, (@marrow), and Amber M. Yates, MD, (@sicklecelldoc).

The panel discussed how social media can be used for research, education, patient information and patient advocacy. The great advantage of using social media is that it is not demanding and its use is flexible. The individual can tailor it to suit his own needs.

The panel focused on the use of twitter and the benefits it provides in the healthcare industry. Twitter is an unique way to share information quickly, rapidly, in real time, and across borders.During the panel discussion, the twitter hashtag for the session, #ASHSM was trending on twitter and the twitter stream was running strong.

One panel member, Cindy Chmielewski had this to say about social media and twitter:

“Social Media is a tool in medicine that shouldn’t be overlooked.  It’s a source of education.  Social media has helped me evolve from a passive bystander to an active partner on my healthcare team.  I use social media to share resources and important information, promote myeloma awareness, advocate for cancer friendly public policies, form communities, but most importantly to learn.
Twitter is one of my classrooms and doctors who tweet are my teachers. The power of Twitter should not be underestimated.  If you educate one patient advocate you can reach thousands of other patients. Studies show that educated, empowered patients have the best possible outcomes. Isn’t that what we all want?  It’s a win-win situation.” 
Watch the video below to learn more about this important panel discussion on the use of social media in medicine.

Events

Can Digital Media Save Clinical Trials Tweetchat

As part of Clinical Trial Awareness Week, A Coalition for Clinical Trial Awareness (@CCTAwareness) and @patientchat will be hosting a tweetchat on May 2nd at 1:oo PM EST.

We will be participating and are inviting you to join us! #patientchat #CTAW2017

New to tweetchats? – Check out this guide we created.