Tag Archive for: social media

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.

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 Live, Instagram 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!

 

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.

Yet 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.

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.