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“Fake News” Can Be Hazardous to Your Health

In a recent post, I talked about the trust that’s required for effective peer health discussions. That trust issue is even more critical when it comes to the science of medicine, and its inclusion in those peer health discussions – as in, is what’s being shared in peer health groups scientifically sound, or snake oil?

One of the downsides of giving everyone a voice – one of the foundational goals of the web, according to Tim Berners-Lee, its creator, “its true potential would only be unleashed if anyone, anywhere could use it without paying a fee or having to ask for permission”- is that everyone has an opinion and a place to express it, but opinions are not facts.

Which brings me to today’s web, where anyone with a smartphone can share an opinion, call it a fact, and gather a community around that opinion-in-fact-clothing. There is dangerous “fake news” mushrooming across the globe, thanks to the web, with the most egregious versions of it driving bad decisions about human health. One example of that is what’s called the anti-vaxx movement, where a debunked article by a disgraced scientist named Andrew Wakefield has continued to drive a mistaken belief that the measles-mumps-rubella (MMR) vaccine given to children under two years old causes autism. (Spoiler: it does not.)

That’s only one example. There are a host of others, including bogus cancer cures that proliferate on Facebook and YouTube, and recommendations that drinking bleach can cure autism. So what’s a patient community member to do? And where’s the clinician community on this issue?

In a powerful op-ed in the New York Times in December of last year, “Dr. Google Is a Liar,”cardiologist Dr. Haider Warraich said that Silicon Valley needs to own their part of this problem, that journalists need to do a better job of covering health and science news, and that the scientific community itself needs to be more transparent and easy to understand when they talk about new discoveries.

It turns out that the cardiology team is playing hard on the side of truth here, publishing an editorial in February 2019 in more than two dozen cardiology-related scientific journals around the world, saying that the medical community needs to help the public vet the message they’re getting from whatever sources they use for health information. The American Heart Association even has a short and snappy video – it qualifies as a thirty second ad that could run on television – “5 tips for finding trustworthy health information online” that recommends: Top of FormBottom of Form

  1. Look for government sites, medical professional societies, and reputable medical schools as information sources
  2. Look for sites that stay current, that refer to updated information and current science
  3. Make sure the information on the site is reviewed by a medical professional
  4. Beware of sites that promote “miracle cures” (and that run ads for those “miracles”)
  5. Verify what you read with your clinical care team

The clinician community has joined the fight against fake news in medical science. The patient community needs to make the same commitment to fighting junk science in our circles. What should be on our list of recommendations for avoiding falling for “fake news”? And should we develop a code of ethics for patient community leaders that covers the information we share online?

I welcome all suggestions, and I’ll include them in a future post. Just hit me up on Twitter, using the hashtag #PtLeaderEthics, or via email. Let’s fight fake science news together, shall we?

Patient Advocacy: How to Create a Visually Compelling Message

Patient advocacy involves sharing your unique knowledge and experience of a disease or condition with the ultimate aim of raising awareness and influencing people to create a desired change. An effective advocacy message is credible, clear and convincing.  When it comes to creating content to support your message, the type of content you create matters.

In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand and retain information more quickly. Furthermore, in an increasingly crowded social media landscape, images can break through the online clutter so more people can find your message.

6 reasons why visual content is effective at getting your message across

  1. People are drawn to images. Eye-tracking studies show people spend longer looking at images on a website than reading text.
  2. People connect more emotionally with images than text.
  3. Our brains process images faster – up to 60,000 times faster than text.
  4. We remember pictures better than any other stimuli. According to neuroscientist, John Medina, we will remember 10 percent of information three days later. But if we add a picture recall goes up to 65 percent.
  5. Images are a universal language. They can be understood regardless of language differences.
  6. Images are shared more often than text only posts. Visual content is more than 40X more likely to get shared on social media than other types of content according to research by Buffer.

How to create your own eye-catching visuals

It used to be the case that to create graphics you had to have graphic design skills, but now any one of us can design eye-catching images using a variety of free and easy-to use apps and online tools.   Below you’ll find listed some of my favorite sites which I use to create professional looking graphics – without spending a cent.

  1. Canva is one of my every-day go-to tools when I am creating visuals. Whether you want to create a Twitter post or Facebook header image, you can do so quickly using Canva’s drag and drop editor. Select from a number of pre-set designs or create something from scratch. It has a multitude of layout options, fonts, images and illustrations to choose from.  You can also add elements such as custom icons, fonts, charts, and illustrations.
  2. Quotes Cover turns quotes or short text into images for social media. You can also use it to create high-resolution images for posters or other print design. Simply enter your quote or text and then choose your preferred design elements, such as font, shadow effect, and color.
  3. Stencil is a super quick and easy way to create graphics. It gives you access to 860,000+ background images. You can add whatever text and/or graphics you’d like to these and directly share them on social media. If you like sharing quotes on social media you can take advantage of their ready to add quotes feature.
  4. Easil is an online graphic design tool with pre-made templates that you can adapt in seconds with simple drag-and-drop tools. It’s especially useful for Instagram and Facebook stories.
  5. Infographics are a great way to present your data in a creative and visually appealing way (see this infographic created by metastatic breast cancer advocate, Jo Taylor, to raise awareness of the signs of secondary breast cancer). To create your own infographics, use a tool like am.
  6. Use Screencastify to create screenshots. This is one of the easiest ways to create images to simply and clearly explain a concept. I also use Snagit and Awesome Screenshot to create my screenshots.
  7. Social Media Resizer is a useful tool to optimize your images for each of the social media sites you are sharing on.  If you don’t size your images correctly for each social network, people won’t be able to see or read them clearly.

Where to find the best images for your graphics

I’m sure you already know that you can’t simply use pictures that appear on Google’s image search. Instead, you need to use a site that provides images licensed as “Creative Commons” — this means the pictures are completely free to be used for personal purposes. The following list of image sites are all great sources of Creative Commons (CC) images.

  1. Flickr is a popular photo sharing platform that allows users to store, sort, search, and share their photos online. It includes a section for photos that have been shared with a Creative Commons license.
  2. FreePik offers users, high quality graphic designs and illustrations. It operates on a freemium business model which means, the majority of the resources offered at Freepik can be used for free, only having to credit the author of the illustration to Freepik.
  3. Pexels provides over 3,800 high resolution photos, collated from other free image sites — making it one of the largest free image directories. Pexels has also added a large library of stock videos to its site also under the CC license.
  4. Pixabay hosts over 650,000 free stock photos, vectors, and art illustrations free of copyrights under Creative Commons. The site also has a collection of stock videos. On the home page, you’ll find a small, curated collection of images and a search bar for more targeted results.
  5. Unsplash gives you access to a bank of 50,000+ free-to-use photos. You can subscribe to receive ten new images every ten days directly into your inbox.
  6. The New York Public Library This site is a living database with new materials added every day, featuring prints, photographs, maps, manuscripts, streaming video, and more.

With so many tools out there, there is no excuse for poor-quality visuals.  Whether it’s a Facebook cover photo, a blog image, or an infographic, there are tools for every skill level. Experiment to find which tools work for you and use them to add more visual appeal to your social media campaigns.

Peer to Peer Health Networks, Trust … and Facebook

Unless you’ve been visiting another planet lately, you’ve probably seen a headline or two (or maybe fifty) about the rising sense that the social network called Facebook might not be trustworthy when it comes to data privacy for the network’s users. Not that the barrage of headlines over the last year have been the first time the company has had to go into crisis communications mode over data privacy issues – there was a dustup over user privacy that led to a US Federal Trade Commission (FTC) consent decree in 2011, which Facebook has apparently ignored in the ensuing eight years – but the current contretemps over betraying user privacy makes the 2011 headlines look like a radar blip.

The impact on Facebook patient communities, who have made extensive use of the Facebook Groups product to gather together to provide support and resources for people dealing with conditions from ALS to rare disease to hereditary cancer risk, is only just starting to break through the noise over the Cambridge Analytica story, which was how the privacy leaks on the platform were first discovered. The ongoing saga of “did the Russians hack the 2016 election,” with Facebook’s likely, if (maybe) unwitting, part in that, adds to the thundering chorus of “what the heck, Zuckerberg” that’s echoing across the globe.

Peer to peer health advice has become part of any person-who-finds-themselves-a-patient’s self-advocacy routine – just ask internet geologist Susannah Fox, who has made a successful career out of observing what people do with the information access bonanza known as “The Internet.” Facebook has become the go-to platform where people gather to discuss their health issues, usually in Closed or Secret Groups, where all kinds of deeply personal and intimate details of their lives, and health conditions, get shared. Discovering that those personal, intimate details had basically been released into the wilds of the web, willy-nilly, with no way to track where that data wound up, has rocked communities around the world who relied on Facebook to provide the connections they’ve come to depend on to manage their health conditions.

In the slow-motion train wreck that the reveal of this data leakage/breach has been, cybersecurity researchers Andrea Downing and Fred Trotter get a lot of credit for digging into the Facebook API to figure out how a Closed Group could become a data-slurping bonanza for any jackass on the internet. Trotter and health-tech legal eagle David Harlow filed a complaint with the FTC, co-signed by Downing and bioinformatics guru Matt Might, spelling out exactly how Facebook had played fast and loose with their Terms of Service for the product, and also allowing their Developer platform to become a data-miner’s paradise with a “there are no rules, really” accountability framework when it came to data snagging.

Since discovering the security vulnerability in 2018, reporting it to Facebook, getting what amounted to a “so what?” response from the platform, and then trying to figure out how to keep community members’ data safe, Andrea Downing, along with Fred Trotter, David Harlow and, full disclosure, yours truly, along with a host of other patient activists, have formed a collective to figure out how to create a community platform for patient communities *off* of Facebook. Stay tuned for updates, that’s going to be a big job, and it’s going to take time and some serious deep thinking and heavy lifting.

In a piece on the Tincture health channel on Medium, “Our Cancer Support Group On Facebook Is Trapped,” Andrea spells out the issue clearly, emphasizing that the promise of connected community that Facebook offered exists nowhere else … yet. And until it does, patient communities are indeed trapped on the network, since that’s still where they get and give the support so deeply needed by people who get a diagnosis, and who want to find out from someone who’s been there, done that, what their own future might hold.

It’s not an easy-to-solve problem, this betrayal of trust that creates a pressing need for the creation of a safe harbor. I’m putting it before you on the Patient Empowerment Network since I know that everyone who reads the pieces posted here has a stake in peer to peer health, and the trust framework that’s required for peer health resources to be effective. If trust is the new network effect, it’s incumbent on those of us who advocate for robust online peer interaction in health, and healthcare, to call for more trustworthy platforms to support our work.

Let’s get on that.

Leveraging Social Media for Patient Advocacy #patientchat Highlights

Last week, we hosted an Empowered #patientchat on leveraging social media for patient advocacy. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice


Social Media Helps Your Connect with Others

 

 

 

 

 

 

 

 

 

 

 

 

 


Just Start

 

 

 

 


Think About When You Were Sick

 

 

 

 


Full Chat

 

Patient Advocacy: Ten Tips to Develop a Stronger Social Media Presence

Social media is a powerful addition to our patient advocacy toolbox. We can use it to raise awareness of our cause, build a community of supporters, promote our key messages and highlight our patient advocacy activities. To help you strengthen your online presence and create more visibility for your cause, I’ve put together this list of ten actionable tips you can put into practice right away.

1. Optimize Your Social Profiles

Your social media profile should be considered a key element of your advocacy brand. What will people’s first impression be of you when they encounter your online profile? What might make them decide to follow you?   Review each of your existing social profiles with the following points in mind.

  • Is it time to use a more professional picture to represent yourself online? Upload an image that is clear and easy to see, like a head and shoulders shot, or your organization’s logo. Make sure to upload images with the correct dimensions for each social platform (check out this guide to social media image sizes).
  • You have an opportunity to personalize your profile on Facebook and Twitter by uploading a custom header image. 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. Or perhaps there’s a project or campaign you are currently working on. If so, include an image to represent this in the header space.

Take Action: Complete all sections of your profile to convey a stronger message and identity.  Schedule a review date every few months to check your information is still current.

2. Focus on Being the Expert One Platform at a Time

Each year brings shiny new social media tools and new features for existing tools. It’s tempting to jump on board the latest social media platform with the aim of being everywhere at once; but rather than spreading yourself too thinly, focus on mastering one or two platforms really well before moving on to the next one.

Take Action: Look back on the past six months and ask yourself which social media platform worked best for you? Which gave you the most engagement? And which platform had the least engagement? Consider focussing your efforts on the high-performing platform and becoming known as the go-to expert on this channel before adding anything new to your social media mix.

3. Schedule Your Social Media Posts

The internet is global and if you want your message to reach further than your own backyard, you need to hit multiple time zones. Tweets have the shortest lifespan of any social media post. Even though the latest Twitter algorithm means that posts are no longer displayed chronologically, Twitter is fast-paced, and messages get buried quickly. To counter this, you need to share your post multiple times on Twitter to increase visibility. 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.

Take Action: Use a scheduling tool like Buffer or Hootsuite to schedule your updates to reach more people, more often. Don’t just post the same update every time. Vary your updates by changing around the headline, highlighting a statistic or quotation or adding different images.

4. Curate Content

The ability to curate credible content to share with our communities is a key skill for patient advocates. Hereditary cancer advocate, Amy Byer Shainman believes “patient advocates not only have a responsibility to curate trusted content but that it is an imperative if you are even going to be calling yourself a patient advocate.”

Content curation is defined as the process of gathering information relevant to a particular topic or area of interest.  While this definition sounds simple, there’s a world of difference between simply gathering information and being an effective curator. A good curator knows how to find, aggregate, and synthesize reliable information, putting it into context for their communities and sharing it in a format that is easy to access and understand.

Take Action:  Set up Google Alerts for the healthcare topics of interest to you.  Google Scholar is also useful as it indexes most peer-reviewed online journals of Europe and America’s largest scholarly publishers.

5. Create Visual Impact

You’ve surely heard this before, but it’s worth reiterating: images matter — a lot. In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand, and retain more information more quickly.

Visual content is 40x more likely to get shared on social media than other types of content according to research by Buffer. Furthermore, people connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. The type of visual assets you can create include images, videos, infographics, quotes and GIFs.

Take Action: Add an image to all your online posts — even those that are text-based. Create a strong visual identity and maintain consistency across all your images by sticking to the same colours, fonts, and layouts. Read How To Create Professional GraphicsEven If Youre Not a Graphic Designer for more tips.

6. Use Relevant Hashtags

Hashtags are a powerful way to increase your visibility on social media. According to Twitter’s own research tweets with hashtags show a 100 percent increase in engagement (clicks, retweets, likes and replies).  Jo Taylor, a moderator of the UK-based breast cancer Twitter chat #BCCWW, explains that “finding disease hashtags opens up connections. If you connect with others you will be able to meet others easily online and you will build and learn from there.”

Take Action: Visit symplur.com to find the relevant hashtags for your disease area. If you can’t find a hashtag related to your topic, you might consider creating your own. For more information on using hashtags strategically read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

7. Live-Report Conferences and Events

Reporting live from an event is a way of engaging your followers by sending updates about an event as it occurs. It allows you to expand the reach of in-person events to provide valuable insights to those who are unable to attend in person. It’s also a way to increase your visibility as an attendee and enhance your credibility.

Live reporting tools include live-streaming using Facebook LiveInstagram Live, and Periscope (Twitter’s live-streaming app).  You can also share posts to your Facebook page and share photos and video clips via Instagram and Snapchat during the event.

Take Action: Read The Advocate’s Guide to Reporting Live from Conferences and Events for more tips on live-reporting.

8. Take Part In Twitter Chats

Twitter thrives on its community and the more you connect with other users the more quickly you will grow your own following. Joining a Twitter chat is a super way to connect and engage. When you attend a Twitter chat regularly, people will get to know you and in this way, you can quickly develop and grow your own network of supporters.  If you’re not familiar with them, 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, for example #PatientChat held every other Friday at 10:00 am Pacific/1:00 pm Eastern. 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. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part.

Take Action: There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. And “if you can’t find a tweet chat you enjoy,” recommends patient advocate, Annette McKinnon, “start a new one, register it @symplur and build a new community.”

9. Create a YouTube Channel

People engage with video more than any other form of content (written, audio, images, etc.). YouTube with more than 1.8 billion monthly active users remains the online video leader. 4 million YouTube videos are viewed every day, and the average session duration of 9 minutes and 28 seconds. That’s more than many other social networks.

Take Action: While producing your own video may seem daunting, video creation has never been more accessible through smartphones.  You can also create simple videos for your channel using free tools such as Adobe Spark and Lumen5 (see my YouTube channel for examples of Lumen5 videos).

10. Maintain a Consistent Content Creation and Promotion Schedule

Social media is an ongoing commitment. You need to post consistently to stay in front of your audience’s eyes and keep growing.  One key to maintaining a steady stream of quality content is to re-purpose what you already have. Check your blog’s analytics (or Twitter and Facebook analytics) to see the most popular posts you’ve written or shared.  Can you expand on these to include new research or thinking? Perhaps the content can be turned into an infographic or a slide-deck.

Take Action: Set aside one day each month to map out upcoming cause awareness days. Then use a simple excel spread sheet to create a calendar for social media postings. Include relevant hashtags and images.  A content calendar helps you maintain a consistent content production schedule, enabling you to plan for seasonal content, and annual campaigns.

Social media is an ever-evolving and fast-moving field, and with so much to learn and do, it’s easy to feel overwhelmed. You don’t have to implement all these tips at once. Try adding one new strategy to your social media plan each week and measure its impact at the end of each month. This way you will know which of these strategies are moving you closer to a stronger online presence.

Here’s to your social media success!

 

Patient Advocacy: Ten Tactics for Mastering Social Media Success

Social media extends beyond the world of Facebook and Twitter. It encompasses blogs and other newer social platforms such as Instagram, Snapchat and Pinterest. If you want to raise awareness of your cause, amplify your patient advocacy activities, and create change where it’s needed most, social media is an important channel to share your message with the world.

Here are ten tactics you can use to master social media, make your cause better known, and grow your online influence.

1. Define Your Purpose

The success of any strategy, whether it happens on or off line, starts with defining a clear purpose for your activities. Ask yourself what you want to achieve with social media and then set specific and actionable goals to achieve it. Goals are the forerunner to success. You need big-picture long-term goals and smaller weekly or monthly goals that allow you to stay on track. For a goal to become a reality it needs to be specific, measurable, attainable, and realistic, as well as time specific. These are often called SMART goals.

Let’s take as an example, a goal to grow your Twitter followers, the following are the steps you would take to make this goal SMART.

  • Specific. The more specific you can be in defining your goals, the easier it will be to clearly see what it is you are trying to achieve.
  • Measurable. Give your goal a number. For example you could state you want to double the number of your existing Twitter followers or grow your following by 10%.
  • Attainable. Is your goal attainable? Can you realistically double the number of your Twitter followers? Or should you aim for a smaller increase to start with?
  • Relevant. Does this goal support your organization’s (or your own personal) objectives, vision, or values?
  • Time Specific. Give your goal a deadline, for example, “I will double my Twitter follower numbers by 10% in three months.”

2. Perfect Your Social Profiles

As I’ve written here before, 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 when they encounter your online profile? What might make them decide to follow you?  Review each of your existing social profiles with the following questions in mind.

  1. Do you need to update your bio with new information? Is there a project you are currently working on? Or a campaign you are part of?  Add this information to your biographical details.
  2. Is it time to use a more professional picture to represent yourself online? Upload 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 on Facebook and Twitter by uploading a custom header image. 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.

3. Focus on Being The Expert One Channel At A Time

Each year brings shiny new social media tools and new features for existing tools. It’s tempting to jump on board the latest social platform with the aim of being everywhere at once; but rather than spreading yourself too thinly, focus on mastering one or two platforms really well before moving on to the next one. Look back on the past six months and ask yourself what you were good at doing. What worked well for you? Then do more of the same. Aim to become known as the go-to expert on one channel before you move on to the next one.

4. Create Share-Worthy 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 a few years ago on the psychology of social sharing. It revealed that people want to connect to other like-minded people and they want to support issues they care about. Above all they want to share content that will be useful for those others 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?

5. Create More Visual Content

In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand, and retain more information more quickly. Furthermore, people connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. The type of visual assets you can create include images, videos, infographics, quotes, and GIFs. There are many tools out there which help you create appealing images without any design skill. I’ve put together a list of free tools here which you may find useful.

6. Make It Easy For People To Share Your Content

By making it easy for visitors to your website or blog to share your content, you increase the likelihood that they will take this action. Make sure your social sharing buttons are clearly visible. This is the most obvious (though sometimes overlooked) way to encourage readers to share your content. Make it easy for readers to share your posts by incorporating share buttons for the main social media sites on your blog. By placing the buttons on the side or at the end of the article, people will be more inclined to share the article.  Use a tool like Click to Tweet which generates one-click tweet boxes or links that can be shared through your website, your blog, or via email, to increase social shares and highlight relevant quotes, stats, and key takeaways.

7. Leverage Hashtags

A hashtag (#) is a popular way of creating and monitoring a conversation on social media. While most often identified with Twitter, posts can also be tagged on Instagram, Pinterest, Google Plus, and Facebook. Don’t over-use hashtags on Twitter. Research shows that tweets with more than two hashtags actually see a drop in engagement. Check the Healthcare Hashtag Project for relevant healthcare hashtags.

8. Maintain a Consistent Content Creation and Promotion Schedule

Social media marketing is an ongoing commitment. You need to post consistently to stay in front of your audience’s eyes and keep growing. Set aside one day each month to map out upcoming events, holidays, and so on, which you would like to write or post about. Then use a simple excel spread sheet to create your content calendar. Do the same thing with another spread sheet for social media postings.

One key to maintaining a steady stream of quality content is to re-purpose what you already have. Check your blog’s analytics to see the most popular posts you’ve written. Can you expand on these to include new research or thinking? Perhaps the content can be turned into an infographic or a slide-deck. By re-purposing content you have already written, you can extend and breathe new life into your current and past content. Check out these ten creative ways to repurpose your content for more ideas.

9. Optimize Your Engagement

To optimize your social media engagement, it’s useful to know the best times to post your updates so they reach your audience when they are online. If you search for optimum posting times, you will find many guides online. They vary in their advice, so it’s always a good idea to do your own testing to determine the optimum times for your own particular audience. Once you’ve determined your optimum posting times, use a scheduling tool like Buffer or Hootsuite to schedule your updates to reach more people, more often.

10. Track and Measure Your Progress

How do you know if all the time you’re investing in social media marketing is paying off? You don’t know unless you put a system in place to measure and analyse your progress. Most of the main social platforms has their own analytics built in. Regularly tracking and measuring your activities on social media helps you see what is working (or not).

Using these ten tactics will help you focus on your goals more clearly, promote your key messages better, and measure your activities more effectively. Don’t expect all of these tactics to work right away. Social media is a strategy that will succeed long-term, rather than be a quick success. If you want to see real results, you must be prepared to commit to it long-term. Finally, remember the goal is not to be good at social media for its own sake; rather the goal is to be good at patient advocacy because of social media. Social media are powerful advocacy tools, but they are just tools. It’s within how you master those tools that the real power lies.

The Benefits and Pitfalls of Blogging About Your Illness

In his book, The Wounded Storyteller, Arthur Frank, Professor Emeritus of Sociology at the University of Calgary, writes that when we are ill we are wounded not just in body, but in voice. He describes how illness can radically alter how a person relates to the world and how we need to find a way to restore our fractured identity. When I was diagnosed with breast cancer over a decade ago, writing a blog, Journeying Beyond Breast Cancer, helped me express myself, reconnect to a new sense of self, and find my voice again.

Throughout her life, the writer Virginia Woolf maintained that her work was incomplete until it was shared with readers. And I think this is also true of being part of a blogging community. When we share our writing, someone else has heard our voice. Someone else cares and understands. So often, illness causes us to feel isolated and cut off from others. Blogging is a way for us to find a shared sense of connection and community.

the-benefits-and-pitfalls-of-blogging-about-your-illnessYet sharing our story online is not without its pitfalls; the most obvious of which is a loss of privacy. You should consider how revealing your medical history online might have an impact on your family and professional circumstances. How will your employer, co-workers, or other family members view you? Do you risk being over-identified with your illness? For me, disclosure of my own story has evolved from initial anonymity to a point where I now choose to share more openly. However, the degree to which I share information still depends on the space where I share it and the degree of trust I have with the people I share with (for instance I consider my blog a safe space to tell my story, but I am more cautious on Twitter). But what happens if that safe space is violated and our expectations of trust are shattered? When our words are taken out of context or used for a purpose we didn’t intend? Is information shared publicly implicitly available to everyone just because it is in the public domain? What are the ethics of research that includes collecting and analyzing patient stories or observing online behaviour without individuals knowing they are being included in research? In an age when technology has outpaced the ethical underpinnings of research and the culture surrounding privacy has changed profoundly, these are questions we need to find answers to.

Although we understand that what we share online is in the public domain, we nevertheless trust each other to maintain a collective sense of privacy, which includes not having our words reproduced without our knowledge or taken out of context. The issue of maintaining privacy in the public domain was brought into sharp focus two years ago when blogger Lisa Adams became the subject of an online debate. Adams, who blogged and tweeted about her experience of living with end-stage cancer, came to the attention of two journalists who strongly criticised what they called “Adams dying out loud.” Their opinions ignited a firestorm of debate about the public disclosure of illness, and the sharing of personal choices surrounding treatment and death and dying.

Illness makes us vulnerable and learning to navigate the digital landscape while also managing our vulnerability is a skill that we need to master if we are to protect ourselves online. Think carefully about what the process of online disclosure entails. Weigh up what you expect to gain from it and what implications sharing this information might have on your career or family life. If you are a parent or carer who writes about a patient, do you have their permission to share this information? In the case of writing about a child, what future effect might this have on one who cannot give consent or understand the significance of their story being shared so widely?

People have always gathered together to share what they know about health and illness, hoping to help and learn from others. What’s new is that we now have the ability to expand the reach of our conversations at internet speed and at internet scale. What happens in real life happens on line, but faster. This has many benefits, but it also means there is a higher potential for unintended consequences when we have less control over who sees our stories. It’s a good idea to periodically review the privacy settings on your social media accounts to decide if you are comfortable with the level of control you have over the information you share. Ask yourself, if your intended audience were sitting in front of you now, how comfortable would you feel sharing this information? How do you think you’ll feel after sharing it? Are you ready for feedback (positive or negative)? Remember sharing your story online doesn’t have to be all or nothing. Go slowly at the beginning, allow trust to build over time, and share only when you feel ready to do so.

Above all, be courageous in sharing your story. I am filled with gratitude for those who bravely blazed the trail in opening the discussion and decreasing the isolation connected with serious illness. I continue to be in awe of the connections and communities forged in the digital space and I look forward to seeing how this will evolve over time.

 

 

Thanks to Social Media, Rare Progress on Rare Diseases

This post was written by Meredith Salisbury for Techonomy.com and was originally published on July, 26, 2016.

Rare DiseaseSolving any disease is hard, but solving rare disease is a special kind of torture. Take everything that must be accomplished with any old disease—What causes it? Under what circumstances? Who does it affect? How can we prevent it or cure it?—and then toss in a scarcity of cases. When doctors don’t see enough patients with the same condition, just recognizing that there are commonalities between them is a major challenge. How do you put together a useful clinical trial with a few hundred patients when there might only be 50 people in the world with a particular disease?

That’s why any advance in how we identify and treat rare disease is cause for celebration. Recently, social media has been a big part of many of those advances. Patients with these diseases are for the first time able to reach across geographic and cultural borders to band together, giving critical mass to efforts like fundraising and clinical trial enrollment that might otherwise wither away. The same technology that lets us fund glowing plants or find fellow cake-decorating enthusiasts may turn out to be the weapon that takes down many rare diseases.

Corrie Painter was on the path to earning her PhD in biochemistry when she was diagnosed with angiosarcoma, a rare form of cancer inside the blood vessels that affects just a few hundred people globally each year. Fewer than a third of patients diagnosed with angiosarcoma will be alive five years later. Six years later, Painter has beaten the odds—but when she speaks about life immediately after diagnosis, one of the things she remembers most is searching online for other patients fighting the same disease. Most of the people she tracked down in these searches had already succumbed to the cancer. Rare disease is tremendously isolating, and patients like Painter learn quickly that few people can truly understand their story.

Today, the angiosarcoma community is vibrant and connected, due in large part to Painter’s efforts. She helped put together a Facebook group for patients or people interested in the disease; it now has more than 2,000 members. At a moment’s notice, they can offer advice to fellow patients, share the latest research news, agree to participate in trials, and more. Painter also cofounded a nonprofit, Angiosarcoma Awareness, that coordinates fundraising for the disease. By gathering the small world of people affected by angiosarcoma, she has made possible what no individual could do alone: raised significant amounts of money on a regular basis to accelerate research into the disease and potential treatments.

As the opportunity for building rare disease communities through social media becomes evident, many people are following the same path. Sonia Vallabh was diagnosed at age 27 with a genetic mutation that makes it a virtual certainty she will develop the same rare prion disease that killed her mother. She and her husband, Eric Minikel, launched a blog and a nonprofit called the Prion Alliance to spur fundraising efforts and provide a source of relevant news and updates for other patients with a range of prion diseases. In 2014, Techonomy covered the remarkable identification of the first several patients with a newly discovered disease; many of those patients were found after the first patient’s parents blogged about the unexpected diagnosis.

To be sure, advocacy groups successfully built rare disease communities long before social media existed. One organization, Genetic Alliance, has been particularly important in assisting rare disease foundations by providing much-needed resources and training in patient advocacy, clinical trials, and more. But as genome sequencing is used to solve more and more medical mystery cases, the rate at which rare diseases are being discovered is increasing.

These new diseases—seen in a single patient, or maybe a few patients—require every tool available to establish communities and resources for supporting patients and developing treatments. As more people sign up for consumer genomic services or online genealogy platforms that allow for connecting with other users, this kind of progress might occur even faster. Rare disease research has long been hobbled by the lack of funding from government agencies with broad mandates. As patients build real communities and organize their efforts, there is good reason to believe that many of these diseases can eventually be targeted and overcome.


Salisbury, Meredith. “Thanks to Social Media, Rare Progress on Rare Diseases – Techonomy.” Techonomy. N.p., 26 July 2016. Web. 18 Oct. 2016. <http://techonomy.com/2016/07/for-rare-diseases-social-media-can-achieve-rare-results/>.

Building A Digital Ladder Of Engagement

Building A Digital Ladder Of Engagement

In my previous articles, I have written about using social media to connect with other patients and advocates, communicate with health care professionals, and access information to help make more informed choices about our own and our loved ones’ care. I am a passionate believer in the transformative potential of social media in healthcare, but I am also aware that each of us has differing levels of digital skills. Whether you are taking your first steps on the ladder of digital engagement, or you have reached the top, digital literacy is an important skill in your patient empowerment toolkit.

This article is for those of you who want to climb further up the ladder to become more digitally savvy with social media. And for those of you who have already reached the top, before you click away from the article believing this isn’t for you, please stop a moment. Think back to when you took your first step on that ladder. Remember the day you sent your first tweet, wrote your first blog post or asked a question in a Facebook group? Were you encouraged and supported in taking the next step in digital engagement? Was it a steep learning curve? Or was there someone to reach out a hand to help you climb the next step? If we are to truly call ourselves patient advocates, isn’t part of our role to help bridge the digital divide for all patients? I want to encourage you to think about how we might work together to extend a helping hand to those patients and their carers who are just starting out online.

What is Digital Health Literacy?

Digital health literacy is the ability to use information and communication technologies to find, evaluate, create, and communicate health information. It builds upon a foundation of health literacy, which is the degree to which individuals have the capacity to access, understand and use information in ways that enhance health. Reading these two definitions, it becomes immediately clear that those who have limited skills in either area are at a critical disadvantage when it comes to managing their own and their family’s health. Giving people access to relevant health information – and support in using that information – will help individuals make more informed decisions about their health care. Increasingly access to information and support is to be found online.

First Steps

If you are new to patient advocacy what first steps should you take to get up to speed? A good place to start is by gaining a better understanding of what it means to be an empowered patient. The Patient Empowerment Network has recently teamed up with Intake.Me to bring you their ePatient courses. These virtual classrooms are designed to help patients take those first steps on the path of patient engagement and advocacy. Follow this link to take the first two classes and be sure to check in regularly for more classes.

App icons on white cloud with smart tablet and ladderWhen you are ready to take your next step on the digital ladder, it’s time to join a social media site. Social media encompasses social networking sites (such as Facebook, Twitter, LinkedIn), blogs, wikis, video and photo sharing sites (such as Flickr, Pinterest, Instagram, YouTube), social bookmarking sites (Reddit, Digg), online communities, and user-generated content sites. With so many channels to choose from it might seem overwhelming at first to know where to begin, but as with any new skill start small and you will build up your expertise with time. Facebook and Twitter are the two of the most popular channels for healthcare conversations. You may already have your own account on these platforms, but if you haven’t it is very easy to set one up. Simply go to www.facebook.com and https://twitter.com/signup to sign up. Both have helpful step-by-step instructions to guide you through the process and at any time you can simply click on the “Help” button if you get stuck.

Facebook

On Facebook you can connect with other patient advocates and join Facebook groups related to your disease or condition. Many organizations have a Facebook presence and by liking their Facebook page you can keep informed of their activities and find other patients to connect with. As Facebook is a public platform and everything you post there can be viewed by a public audience, it’s important to consider the level of privacy you are comfortable with. You can adjust your privacy settings in Facebook at any time so your posts are visible to an audience of your choosing; for example “friends only”; “friends of friends”; or “public”. If you decide to set up your own page or group for your cause, you can easily do this in Facebook. Visit www.facebook.com/pages/create for instructions.

Twitter

While Facebook groups and pages are useful resources for patients, Twitter takes the healthcare conversation to another level. Think of it as a digital town square. Here you have a greater mix of patients, physicians, healthcare professionals, medical researchers, and the public all coming together in one virtual space to discuss healthcare matters.

Your Twitter profile is the first place someone will look when they go to your profile. If they find only a default Twitter picture and no bio details, your advocacy credentials may be called into question. Complete your profile by adding your name, a picture, and some brief details about your advocacy work so people can learn more about you.  It’s a good idea to listen first before leaping into the Twitter fray. This is true for any new community, whether virtual or in real life. This way you can understand the normative interactions existing on the platform. You don’t even have to tweet to learn from Twitter; there is a lot to learn from just following the right people but your experience will be richer if you join in with others in their conversations. If you are not sure what you should tweet, try something simple like introducing yourself, @mention someone you already know on Twitter, or retweet (RT) something that will be helpful to your followers to get your first conversations started.

Find People To Follow On Twitter

Start by following the Twitter accounts of organizations and groups related to your disease or interest. Go to their website and click on the Twitter follow button if they have one. Twitter will also populate your account with suggestions of similar groups and individuals on Twitter. Pretty soon you will have built a list of relevant accounts to follow. It’s a good idea to organize these accounts into lists; e.g. “organizations”, “researchers”; “patient advocates”; “hospitals”. You can create your own lists or subscribe to lists created by others (here’s a list of patient advocates on Twitter which I created). Find people who can serve as online role models for you. If you are already a seasoned Twitter user, reach out to someone new and offer to mentor and guide them.

How To Find Health Related Conversations On Twitter

(1) Advanced Search

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 – for example “diabetes”. 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.

(2) Hashtags

A hashtag is simply a keyword preceded by the #symbol. Hashtags create a hyperlink which will bring up every public update tagged with the same hashtag keyword. To create a hashtag, simply place # before a word; e.g. #diabetes. Familiarize yourself with the relevant hashtags related to your topic of interest. Hashtags are a useful way to search for health related topics and organize conversations around a keyword topic.

(3) 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. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part.

When you are ready to join in a chat, login to your Twitter account at the specified time and search for the relevant # (e.g. #diabeteschat). You don’t have to tweet; you can just follow the conversation, especially if you are still getting used to tweet chats, but do introduce yourself and mention that you are new to the chat. Twitter chats can be quite fast-paced and you may feel as if you aren’t keeping up with every tweet. Don’t worry. You can always catch up at your own pace later by reading the chat transcript available after the chat has finished. You can also use a “chat-room” tool, such as TweetChat to help you focus solely on the chat – only tweets with the hashtag will appear on your screen so you can filter out any other twitter conversations not related to the chat.

(4) Conference Live-Tweeting

Twitter is fantastic for taking the content of conferences beyond the walls of a conference venue. It is becoming more popular for conference organizers and attendees to “live-tweet” sessions directly from the conference. You can follow along on Twitter using the conference hashtag. Many conferences register their hashtag with the Healthcare Hashtag Project or include the hashtag on their conference website.

These are just some of the many ways in which your patient advocacy can be enhanced through social media. If you have been hesitant or unsure where to start, I encourage you to take that first step by setting up an account on Twitter or Facebook. Don’t be afraid to reach out to others for help along the way.

A Rising Tide

The aphorism “a rising tide lifts all boats” was first used by President John F Kennedy in a speech to describe the idea that when an economy is performing well, all people will benefit from it. This wisdom can equally be applied to the empowered patient movement. One of the ways in which we lift each other up is through strengthening our connections online. So ask yourself, who will you lift up today?

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

Social Media in Hematology

Interview With Dr. Laura C. Michaelis (@lauracmichaelis), MD Clinician and Clinical Researcher at the Medical College of Wisconsin

In an interview with Dr. Laura Michaelis, she discusses how social media can be great tool to connect with other patients with the same disease.  Dr. Michaelis says social media has really revolutionized the way patients to patients, patients to doctors, and doctors to patients are communicating. Watch the full video below to hear the multitude of ways social media can benefit patients and doctors.

Social Media in Hematology from Patient Empowerment Network on Vimeo.


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Andrew Schorr:

I just want to get a show of hands of something for a second. How many of you go on the internet to find information for your MPN? Most everybody. Okay. And one other one. How many of you have connected with other patients, like in social media where you’re somehow part of a discussion? Okay. I just want to talk about it and I know that actually Dr. Michaelis, you actually encourage people. This whole connection, Patient to Patient, you’re a big fan of.

Dr. Michaelis:  

Oh yes, absolutely. I actually think social media has really revolutionized the way that patient to patient communication happens, patient to doctor communication happens.

And doctor to patient communication happens. There’s actually a nice paper published out of MD Anderson recently that looked at hematologists and social media Twitter accounts and how people communicate that way. There’s going to be a talk at our national meeting, the American Society of Hematologists, teaching doctors how to use Twitter and use social media not only to talk to one another, but also to talk to patients and also move policy change; policy in certain conditions.

I know a lot of patients who have Facebook groups where they communicate with one another. That can be an invaluable source not only of information but also comradery to take the loneliness out of having a very rare disease where you don’t feel like anybody else knows what you’re going through. We’ve had little town meetings via Twitter where people share information or get communication that way.

I think the sky’s the limit the way that technology is going and how we really branch out from being in our own institutions and just talking to one another within that institution about caring for patients or moving the disease forward. And now we’re looking at a whole different level of communication.

Andrew:   

I’ll mention just a couple of resources for you. So first of all, if you happen to be in the PRM-151 trial, this is the queen of a Facebook group for that. And what’s been happening now is on Facebook, if you’re familiar with it, some people are forming pages and groups around the trial they’re in. it’s not the drug company; it’s not even the clinic. It’s the patients actually in the trial. It’s kind of cool, isn’t it? Yeah, it really is. And then a couple of other resources.

There’s one that started in England and is proliferating around the world called HealthUnlocked.com. The folks from England with MPNs, which was started by a peer of theirs, Dr. Claire Harrison in London, she helped working with patients start a group called MPN Voice.

Dr. Michaelis:   

Yes, one other thing. I would also recommend there is a national resource called ClinicalTrials.gov. This is available online. This is a completely updated list of clinical trials and you can search it by location or by center.

So if you’re getting your care in Akron, you can look at what clinical trials are available in Ohio, or what clinical trials are available 250 miles from me. And then you can search down by myelofibrosis or PV, etc. So I think that and the clinicaltrials.gov and the NCI also have good information on that.

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Are We Ready for Mobile Health?

Are we ready for mHealth in 2016?

Mobile health, also called mHealth, is a term used for the practice of medicine and public health supported by mobile devices. It is a growing industry fuelled by the rise in ownership of personal mobile devices. A new national survey shows that more than eighty percent of US residents between the ages of 18 and 49 currently own an app-enabled mobile phone. Fifteen percent of the population have purchased wearable devices that connect to their phones adding functionality such as tracking capabilities. These devices worn on the body or incorporated into garments and accessories such as wristbands and watches, have given rise to a development known as the “quantified self” movement. By routinely tracking everyday behaviors, such as sleeping patterns and activity levels, wearables aim to move individuals closer to better health habits. According to the International Data Corporation Worldwide Quarterly Wearable Device Tracker, wearable device shipments reached 76.1 million units in 2015, up 163.6% from the 28.9 million units shipped in 2014.  But beyond the hype of the industry’s claims about the scale of wearable technology, how ready are we to use them in a clinical setting?

In spite of all the buzz and excitement, the reality is that the industry is still at the early stages of development and adoption. Many doctors question the clinical value of activity trackers and struggle to know what to do with the deluge of data wearables produce. Recording individual numbers is of little value when there is no system to extract meaning from it and show how it all works together. In an online survey conducted in September 2015  just 5% of respondents indicated that their organizations were “very prepared” to develop patient insight from emerging data sources like wearables. Nearly a quarter indicated their organizations were “very unprepared” and nearly half called their organizations “unprepared.”

Providers have concerns about reliability, interoperability and reimbursement. Research conducted at UCSF Center for Digital Health Innovation compared the data reported by consumer wearable devices to relevant clinical gold standards in multiple studies over the past two years. It found that very few devices currently on the market perform with the reliability of a medical-grade device. It’s a key point to note. Most health-related wearables aren’t regulated in the same way as medical-grade devices. Physicians are not only worried about the accuracy of the data being collected, but also have questions about unauthorized device use and data leaks. Consumers also need to trust that the data collected in their health apps will not be used for other purposes of which they are unaware. We can add to these concerns the fact that most health apps are limited in functionality, operate in isolation from each other and are interoperable within existing healthcare systems.

Even for those consumers who see value, faced with a multitude of fitness trackers, the unregulated and fragmented world of mHealth makes it difficult to select applications that provide true health benefits. User retention is also an issue. According to an MIT Technology Review report, about two-thirds of consumers who have downloaded an mHealth app have stopped using it. There are further consumer concerns such as privacy issues, the ability to transfer data across platforms and software, high data entry burden and cost factors which also limit mHealth efficacy.

mhealthGiven the questionable clinical relevance and poor usability scores, is mobile health technology of any real value in health care? While activity trackers can help you get fit, consumer wearables and apps have yet to be clinically proven. However, there is another type of health technology which shows more promise in a clinical setting. These target a specific clinical issue, for example a wristband which can detect seizures for people with epilepsy, a mobile app which helps manage cancer pain, a smart pill dispenser, and apps for monitoring post-operative quality of recovery of patients at home. A global survey conducted by market research company research2guidance, showed that people with chronic conditions are the most common target audience for app developers, and hospitals have replaced physicians as the second biggest target audience. A recent article in the Wall Street Journal reports that hospitals are developing mobile apps to help patients manage serious medical conditions and feed information back to their doctors between visits, often in real time.

Research conducted by Mayo Clinic showed that patients who attended cardiac rehabilitation and used a smartphone-based app to record daily measurements such as weight and blood pressure had greater improvements in cardiovascular risk factors. They also were less likely to be readmitted to hospital within 90 days of discharge, compared with patients who only attended cardiac rehabilitation. MD Anderson has also stepped up patient care with its new Apple Watch feasibility study. Its cancer center is distributing 30 Apple Watches to patients in various stages of treatment for breast cancer. An app called emPower will run on the Apple Watches and the users’ phones. Patients will use the device to answer quick multiple-choice questions about their mood, symptoms, possible treatment side effects (like headaches or nausea), and more. The provider will also use the device to capture activity and heart rate data to help them anticipate potential issues before they worsen and intervene sooner.

Apple’s release of its ResearchKit earlier this year opens up a promising avenue to extend mHealth applications to medical research. ResearchKit is an open-source set of tools that researchers can use to create a clinical research study. It can facilitate unprecedented, real-time access to potentially tens of millions of people, who will participate in research by submitting data through their iPhones. Within a day of launching, 11,000 participants signed up for a Stanford University cardiovascular trial. Stanford said at the time that it would normally take a national year-long effort to get that kind of scale.

What makes a health app successful?

Developers appear to be motivated more by the cleverness of a technology than actual improvements in health outcomes. A new study from the New York University School of Medicine Department of Population Health reports that only 29% of smartphone owners using health apps say the apps have made a big impact on their health. That’s compared with 60.3% who see little to moderate improvement and 10.5% who say their health did not improve or even declined. A recent global study which analysed the views of patient and carer groups to determine what they want, but are not getting from current apps, reported that respondents wanted an app which provides trustworthy, accurate information alongside a guarantee that their personal data are secure. Respondents also wanted more meaningful and timely communication with their healthcare provider, including the ability to easily schedule a doctor’s appointment, or refill a prescription. Other factors included the ability to self-manage and make informed choices, taking into account different levels of health literacy and differing patient experiences with a medical condition or user experiences when health.

What can developers do to improve the current design and broaden the appeal adoption of mHealth applications?

The involvement of end users during the process of inventing and designing new technologies is a critical success factor. We cannot design health care solutions or services without taking into account patient values and preferences and the context in which they live their lives.   The lack of user involvement is one of the major reasons why health apps have failed to deliver thus far. Developers should involve patients, carers, and healthcare professionals at each stage of the app’s development, making sure it is in line with their needs. If an application does not solve a real problem for the patient it will not be adopted. The most successful health applications are those that understand the real-life problems that come with living with a condition and create solutions that meet real needs and make real impact. This can only be done by co-creating applications with patients and their carers.  It is patient input into a solution’s design, ongoing practice and evaluation that ultimately holds the key to success. After all, who knows better than the patient what will have the most impact on their ability to get and stay well?

mHealth Potential and Pitfalls

The rise in mobile and wireless technologies has the potential to transform the way healthcare services are delivered, particularly in the management of chronic diseases. Numerous studies have shown that patients who are “activated” in their care experience better health outcomes at lower costs compared to less activated patients. By creating an ecosystem of connected, wearable devices, we can deliver more timely care and monitor patient activity in real-time, thereby reducing hospital readmission rates, improving outcomes, and delivering cost savings. Global consulting firm Accenture recently conducted a study revealing that the United States would save approximately ten billion dollars annually with the introduction of a wider range of digital health services.

Mobile health technologies also have the potential to make healthcare more patient-centric, shifting the balance of power in the patient’s favour. Instead of being solely dependent on health providers, patients can manage their health more proactively. A new study presented this month at the American Medical Informatics Association conference in San Francisco reports that mHealth makes patients feel empowered in caring for their diabetes, leading to tangible health improvements in just a few weeks, as well as a heightened sense of control.

But for health consumers to fully tap the benefits of mHealth, the technology needs to be able to provide meaningful and actionable insights, alongside a UX that is easy and engaging. The value of an app or wearable will remain limited if it does not provide access to actionable data. Tracking metrics in isolation is not enough; you also need to know how to extract meaning from the numbers to turn data into smarter health decisions.

Key factors for adoption by providers and payers include technical support for integration, creating practical reimbursement models and ensuring interoperability within and across healthcare systems. The National Health Service (NHS) in England has begun to address issues of app curation and evaluation by creating its own apps library of health issues. By giving them official backing the NHS hope to give clinicians, patients and carers more confidence in using health apps. In the US two new academic partnerships are set to tackle app curation The MIT/Harvard partnership, Hacking Medicine Institute, believes the most effective apps will be chosen by consumers, not their doctors. Meanwhile a partnership between Columbia University’s HITLAB and Las Vegas-based Social Wellth is focused on putting apps through a rigorous set of standards.

As the mHealth market matures and standards improve, clear winners will emerge. The industry needs to shift its focus on delivering clinically effective tools that make a real impact in the lives of individuals. Only then can we truly declare mHealth a game-changer in health-care.

#ASH15 Hosts Discussion on Social Media

#ASHSM Panel Discussion

#ASHSM Panel Discussion

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.

Virtual Patient Communities

Virtual Patient Communities Engendering A New Social Health Era

Howard Rheingold, who coined the phrase virtual communities, describes them as “cultural aggregations that emerge when enough people bump into each other often enough in cyberspace.” Rheingold’s words, though descriptive, may not fully capture the depth and breadth of experience many patients find when they go online.

Before the Internet connected people from every corner of the globe, many patients experienced their illness in isolation. Humans have an innate desire to feel connected with others who live life through similar lenses. The Internet, and social media in particular, has lessened this sense of isolation. It has shown us how much people are willing to reach out to others to provide advice and support – even to strangers online. Clay Shirky, author of Here Comes Everybody: How Change Happens when People Come Together, holds that “the desire to be part of a group that shares, cooperates, or acts in concert is a basic human instinct.”

There are as many reasons for joining a virtual community as there are communities online. Probably the most common reason people go online when they (or someone they care about) are diagnosed with an illness, is to find information. Figures from the Pew Research Center show that 1 in 5 Internet users have gone online to find others who might have health concerns similar to theirs. That percentage is even higher – 1 in 4 – among those living with chronic disease, or caring for someone with a disease. Not surprisingly, doctors remain the first choice for an accurate medical diagnosis. But the number of patients saying they turn to their friends, family and other patients for day-to-day advice, and emotional support is higher.

For some patients turning online for support is more convenient; not everyone can attend an in-person support meeting at the time they most need it. Online you can find 24/7 access to support, unbound by restrictions of time or location. Any person, anywhere, any time – whether they are a patient, caregiver, family member, or friend—can find someone else in similar circumstances who understands what they are going through.

For others, it is about finding hope. Corrie Painter, an angiosarcoma patient, passionately believes that networked patients save lives. In Rare Cancer Meets Social Media, Painter captures the joy of finding hope online.

“When faced with mortality, I think the first thing many of us do is try and find someone, ANYONE else who understands what we’re going through. I put feelers out into every corner of the Internet. And I found people! I sent them messages and received nothing in return. Turned out they were gone, all of them, by the time I tried to reach them. So I turned to Facebook in a last ditch attempt to find anyone who knew anything about this disease. And I found her. The one and only Lauren Ryan, alongside eight other members of an angiosarcoma facebook group that Lauren started in 2010. Every single one of them was alive. They were ALIVE. I instantly connected with each of them. Josephine was 3 years out from my same diagnosis and was ALIVE. Lauren was a year and a half out and had no evidence of disease. They took me under their wing and provided me with hope in spades. I clung to every word they wrote. It was the same story eight times over”.

Personal stories and first person accounts of illness are the life blood pulsing through the social media healthcare eco-system. By telling your story, you can help shed light on a condition’s symptoms, prognosis, and other details for those still searching for the correct diagnosis. Medical terminology and data, though undeniably important, can obscure what it means to live with a disease and make it difficult for most people to relate. Personal stories, though, frame our individual experiences in a way that lets others connect and find diagnostic clues that may have been missing. Isabel Jordan, the mother of a son with a rare disease, credits reading a patient’s blog to help her finally see the pattern in symptoms in her own son’s life, which set them on a new diagnostic path.

“As a parent of a child with a rare disease I’m constantly looking for patterns, for clues, for ideas of what could be next in our diagnostic journey,” she writes, “I look for researchers, doctors, other connected parents to see what they are posting. It was through reading someone else’s blog that I could finally see the pattern in symptoms in my own son’s life. Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path. Would I have seen them anyway? I don’t know. But I credit my connections on social media for helping me keep my eyes open to new ideas”.

In the case of rare diseases, where doctors simply don’t have the answers to patients’ questions due to low patient numbers and, consequently, insufficient research into the disease, it is the patients themselves who are banding together to find the answers they need. Katherine Leon, an SCAD (spontaneous coronary artery dissection) survivor, leveraged the power of her virtual community to find the cause of her rare heart disease, and prevent it from happening to others. At the time of her diagnosis, SCAD was a poorly understood and under-researched condition. Physicians had no clinical studies on which to base treatment plans. Katherine connected with fellow SCAD survivors through social media and used their collective voice to do what hospitals couldn’t – to launch research at the Mayo Clinic. Leon credits social media as a key research accelerant. “Social media absolutely gets the credit for making scientific study of SCAD possible” she says, “in 2003, my cardiologist told me I would never meet another SCAD patient. It was just too rare. Today, I “know” more than 1,000 fellow survivors thanks to Inspire, Facebook ‎and Google”.

If stories are the life blood of an online patient network, a strong sense of community is at its heart. Members share an emotional connection to each other and a sense of shared experiences. They have a feeling of belonging to and identifying with the community, believing they matter within the community and they can influence and be influenced by them. Diabetes patient and advocate, Renza Scibilia believes that “there can be real solidarity when you are part of an online community.” She writes, “one of the reasons social media is so powerful is because of the way it connects people. By removing all the constraints that would normally prevent people from sharing, we form connections based on shared experiences and familiar stories”.

What does the future hold for virtual patient communities?

In David Weinberger’s book, Too Big To Know, the author argues that we are in a new age of “networked knowledge”; meaning that knowledge – ideas, information, wisdom – has broken out of its physical confines and now exists in a hyper-connected online state. Translating Weinberger’s argument to healthcare, the narrative is one in which the uptake of social media signifies a radical transformation of established notions of patienthood, with patients now situated within connections to other patients, family members, carers and healthcare professionals, creating a new social health experience.

CEO of Smart Patients, Roni Zeiger M.D., is convinced “that our next exponential leap in medical progress depends on us learning from networks of micro-experts.” The learning that begins in virtual patient communities can quickly translate to offline activity. Corrie Painter knows first-hand the power of tapping into a network of micro-experts.

“When people find us now”, she writes, “it actually might change the course of their disease. We have sent so many people to the same doctors that they have become clinical experts. These doctors now understand nuances of this disease that weren’t possible when only a handful of angiosarcoma patients would come through their clinics each year. Patients who get treated at these large volume centers bring the knowledge from these clinician experts to their local doctors. As a result, the patients are driving expertise in this rarest of rare orphan cancers, and that expertise is filtering out into local clinics. All because of our collective need to connect with others diagnosed with angiosarcoma”.

In the future, new online tools will come and they will go, but our innate desire to reach out, to connect, and to help one another will remain. It’s people who ultimately build communities, not technology. The communities may be virtual, but they are no less real. It’s still individuals speaking to other individuals, people helping other people. What’s changed, to quote Sussanah Fox, Chief Technology Officer at U.S. Department of Health and Human Services, is that we now do it at the speed of internet connectivity. Fox thinks that “the most exciting innovation of the connected health era is people talking with each other.” That may sound simple, but as the stories in this article illustrate, talking with each other can have profound and far-reaching effects in our connected digital age.

 

 

Knocking Down Barriers to Accrual Using Social Media

Social Media uses powerful tools that can be used to dispel myths about clinical trials and to engage patients.

(Editor’s Note: Cindy Chmielewski, a myeloma patient, member of the PEN Advisory Board, and longtime patient advocate and teacher, presented a poster exhibit at the recent 2015 AACR conference on the use of social media for clinical trial accrual. Below is the poster description and an image of the poster)

Multiple Myeloma is an INCURABLE cancer of plasma cells. Many researchers feel that a cure can be found in the near future if clinical trials which test their hypotheses are properly designed, fully enrolled and completed in a timely fashion. As a myeloma patient it is frustrating to hear that less than 5 % percent of adult cancer patients participate in clinical trials and that 24.4% of cancer clinical trials close early because they fail to complete enrollment. As an independent patient advocate I have made it my mission to use Social Media to knock down barriers to trial accrual.  Social Media provides powerful tools such as online patient communities, Twitter, podcasts, Facebook, patient blogs, and YouTube that can be used to dispel myths about clinical trials, excite the population about the successes of recent research and educate potential participants and physicians about clinical trial options.  According to the Center for Information and Study on Clinical Research Participation (CISCRP) an overwhelming majority of people (77%), say that they would consider getting involved in an appropriate clinical research study if asked. Since many doctors aren’t asking patients to participate in clinical trials patients need to be educated and empowered to question their doctors about ALL their treatment options, including trial participation. Social Media has helped me evolve from a passive by-stander in my medical care to an engaged partner and it is my mission to use it to help fellow patients.

Social Media and Clinical Trial Accrual

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