Tag Archive for: social media

12 Ways To Become A Stronger Advocate: A Month-by-Month Guide to Achieving Your Advocacy Goals in 2024

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As we begin a new year, now is an ideal time to review your advocacy goals and determine how to make a bigger impact in 2024.

This article outlines 12 actionable approaches to enhance your advocacy efforts in the upcoming year. This list isn’t exhaustive, and you don’t need to complete all of the activities to make a difference.  Go at your own pace.  Be sure to set small, manageable goals to avoid getting overwhelmed. Tracking your progress from month to month will allow you to see the positive impact you’re making in the world.

January: Define Your Vision

Kickstart your year with a compelling vision for your advocacy. Structure and refine your vision using SMART principles. SMART stands for Specific, Measurable, Achievable, Relevant, and Time-bound.

Here’s how you might apply these principles to help you set SMART objectives for awareness-raising activities:

  • Specific: Develop a clear and specific objective, for example, increasing awareness about breast cancer early detection on social media.
  • Measurable: Set a metric for success, such as “achieve 1,000 shares of awareness posts.”
  • Achievable: Is this goal achievable? Consider how many social media followers you have, how much time you are willing to devote to the campaign, etc.
  • Relevant: Align the awareness campaign with Breast Cancer Awareness Month and leverage relevant hashtags to maximize impact.
  • Time-bound: Launch the campaign on the first day of Breast Cancer Awareness Month and conclude it by the end of the month.

February: Build Partnerships

Collaboration amplifies impact. Establishing meaningful partnerships not only broadens the scope of your activities but also infuses them with diverse perspectives and expertise. Do some research this month to find organizations and individuals with similar missions or advocacy goals to yours.  Aim to find partners who complement your efforts and have skills or resources you can use. Show how collaboration can benefit both parties by crafting a compelling narrative about your advocacy goals.  Identify influencers or thought leaders with a large following within your advocacy space. Provide them with a clear proposal on how their influence can help advance your cause.

March: Capitalize on Awareness Days

Take advantage of awareness days, weeks, and months to inform and educate your audience. Prepare a list of specific dates and create a content calendar dedicating specific time frames for planning, creating, and promoting content around each designated date.  You will need to brainstorm ideas, outline topics, and decide on the format (blog posts, videos, infographics, etc.). Add the dates to your social media calendar. Plan posts leading up to the event to generate anticipation, on the day of the event to participate actively, and follow-up content to sustain engagement. Use relevant hashtags to increase visibility.

April: Compile a Glossary of Medical Terms

One of the things I remember most when I was a newly diagnosed patient was how mystifying the world of cancer was for me. Having to learn unknown medical terms and scientific jargon was like learning a whole new language. Make the process less mystifying for newly diagnosed patients by putting together a useful list of medical and scientific terms (as I did with this Clinical Trials Jargon Buster). Think about adding interactive features to the glossary, such as hyperlinks to related terms, multimedia elements, and cross-references. This enhances the learning experience and engagement for users.

May: Optimize Your Social Profiles

Creating a compelling online profile is essential for building a strong digital presence. By investing time and effort into optimizing your online profile, you create a positive and impactful first impression. This, in turn, encourages individuals to follow you, engage with your content, and join your advocacy efforts.

  • Profile Picture: Choose a high-quality shot where your face is clear and easily recognizable. Adjust the dimensions of your profile picture to match each platform’s specifications.
  • Custom Header Image: Add a custom header image that complements your advocacy efforts. This could be an image of you engaged in a relevant activity, for instance holding a sign with a powerful message, or representing a current campaign.
  • Profile Information: Fill out all sections of your profile with relevant information. Include a concise yet informative bio that highlights your cause. Use keywords related to your advocacy to make your profile easily discoverable through search. If applicable, include highlights of your advocacy achievements, campaigns, or collaborations. This builds credibility and demonstrates the impact of your work.
  • Location Details: If you want to connect with local communities, specify your location.
  • Contact Information: If appropriate, include contact information such as an email address or a link to your website. This allows interested individuals or potential collaborators to reach out to you easily.

June: Conduct A Content Audit

This month, evaluate your existing content.   To ensure your existing content is relevant, accurate, and accessible, you need to review it regularly.

  • Review and Update Information: Begin by systematically reviewing all your content, including blog posts, articles, social media posts, and any other published materials. Check for outdated statistics, recommendations, or references that may have changed since the content was created. Be proactive in updating these elements to ensure that your audience receives accurate and reliable information. This not only maintains your credibility but also demonstrates your commitment to staying current and informed.
  • Assess Accessibility: Evaluate the accessibility of your content by considering language, literacy levels, and cultural sensitivity. Make sure your language is clear, concise, and easy to understand. Whenever necessary, provide explanations or definitions of medical terms.
  • Optimize Fonts for Readability: Pay attention to the fonts used in your digital content. Choose sans-serif fonts like Arial, Verdana, or Open Sans for better legibility on screens. Sans-serif fonts are clean and easier to read, especially in smaller sizes. Contrast and Color Considerations: Ensure sufficient contrast between text and background colors. High contrast improves readability, especially for individuals with visual impairments or those viewing content in different lighting conditions.
  • Alt Text for Images: If your content includes images, provide descriptive alt text for each image. Alt text, or alternative text, is a brief textual description of the content of an image, allowing individuals who use screen readers or other assistive technologies to understand and interpret the visual information on a webpage.

July:  Mid-Year Review and Adjustments

We’ve reached the halfway point of the year.  Now is a good time to take stock of what you’ve achieved in the first six months of 2024.

  • Reflect on Goals and Progress: Review the goals you set at the beginning of the year. Assess how each goal is progressing.
  • Revise Timelines and Strategies: If certain goals are behind schedule or not progressing as expected, consider revising timelines and strategies.
  • Assess Personal Advocacy Goals: Reflect on your personal growth and development as an advocate. Identify the skills and knowledge you’ve gained over the past six months.
  • Enroll in Training Programs and Workshops: Based on your self-assessment, seek out relevant training programs, workshops, or courses to enhance your skills. This could include social media strategies, communication skills, leadership development, or any other areas that align with your identified growth areas.
  • Seek Mentorship: Consider seeking mentorship from experienced advocates. A mentor can provide valuable guidance, share insights, and offer constructive feedback to help you navigate challenges and accelerate your growth.
  • Acknowledge and Celebrate Milestones: Celebrate the milestones and successes you’ve achieved in the first half of the year. Share these achievements with your audience to build momentum and inspire continued support.
  • Refine Strategies for the Second Half: Based on your mid-year review, refine your strategies for the remaining months of the year. Incorporate the lessons learned, capitalize on successful approaches, and leverage your newfound skills to propel your advocacy forward.

August:  Hone Your Writing Skills

Writing persuasively is a foundational skill for advocates aiming to communicate effectively, mobilize support, and drive positive change. Here are some tips to keep in mind:

  • Use Everyday Language: Using plain, everyday words ensures that your message is easily understood by a broader range of people. It promotes inclusivity and prevents confusion, aligning with the principle of clear and concise communication.
  • Speak Directly to the Reader: Personalizing your writing by using pronouns like “we” and “you” establish a direct and conversational tone. It creates a more approachable and inclusive communication style, building trust between the writer and the audience.
  • Follow Mark Twain’s Advice: In his advice “Don’t let fluff, flowers, or verbosity creep in”, Mark Twain stresses the importance of clarity and conciseness. Extraneous details and overly complex language can dilute your message’s impact.
  • One Idea per Sentence: Presenting one idea per sentence promotes clarity and prevents information overload. Readers can digest information in bite-sized chunks, making it more digestible and accessible. In addition, this approach ensures that readers who skim or scan the text capture essential information.
  • Edit for Clarity and Conciseness: After writing, take the time to review and edit your content. Ensure that each sentence serves a purpose, and eliminate unnecessary words or phrases.

September: Perfect Your Presentation Skills

Advocates with strong presentation skills can communicate their points clearly and persuasively to a variety of audiences. This month take time to explore resources and books that focus on effective public speaking and presentation skills. Look for renowned titles such as “Talk Like TED” by Carmine Gallo or “Presentation Zen” by Garr Reynolds. These resources provide insights into structuring compelling narratives, engaging audiences, and delivering memorable presentations.

Analyze speeches from accomplished advocates, leaders, or public figures. Observe their delivery style, how they structure their presentations, and the techniques they use to captivate their audience. Learning from successful speakers can provide valuable insights and inspiration for refining your own approach.

Enroll in online courses or participate in webinars dedicated to enhancing presentation skills. Platforms like Coursera, LinkedIn Learning, or Udemy offer courses on public speaking, storytelling, and presentation design.

Consider joining local or online public speaking groups where you can practice and receive constructive feedback. Toastmasters International is a well-known organization that provides a supportive environment for individuals to develop their speaking skills. Regular practice in a supportive community can significantly boost your confidence and proficiency.

October: Try Some New Tools

Let’s have some fun this month by trying some of the many available tools to enhance your online activities. Whether you need to edit an image, make custom graphics, or schedule your posts, there’s a tool for you.

  • Graphic Design Tools: Explore graphic design tools like Canva, Adobe Spark, or Piktochart. These platforms offer user-friendly interfaces with pre-designed templates, making it easy to create visually appealing graphics for social media posts, and other content.
  • Image Editing: Experiment with image editing tools to enhance and customize your visuals. Adobe Photoshop Express, Pixlr, or Fotor are excellent choices for editing images, adding filters, adjusting colors, and incorporating creative elements.
  • Social Media Schedulers: Simplify your social media management with scheduling tools like Buffer, Hootsuite, or Later. These tools often come with analytics features to track post performance.
  • Video Editing Platforms: Dive into the world of video content using tools like InVideo, Kapwing, or Adobe Premiere Rush. Create engaging videos, edit footage, and add special effects to convey your advocacy message in a dynamic and captivating way.
  • Survey and Feedback Tools: Gather insights and feedback from your audience using survey tools like Google Forms, Typeform, or SurveyMonkey.
  • Webinar and Virtual Event Platforms: Host engaging webinars or virtual events using tools like Zoom, Microsoft Teams, or Webex. These platforms offer features for presentations, Q&A sessions, and audience interaction, making online events more dynamic and participatory.
  • Podcast Creation Tools: Explore podcast creation tools like Anchor, Audacity, or Descript. Podcasts are a versatile and engaging medium for sharing stories, interviews, and information.
  • Data Visualization Tools: Turn complex data into compelling visuals with tools like Tableau, Datawrapper, or Infogram.
  • Browser Extensions: Enhance your online browsing experience with helpful extensions. Grammarly can assist with proofreading, Pocket allows you to save articles for later, and Bitly shortens URLs for cleaner sharing.

More tools to try: I’ve compiled a list of my favorite tools here.

November: Express Gratitude

Keep November’s theme of thanksgiving in mind this month by showing your appreciation to your supporters. This sense of appreciation not only encourages continued support but also deepens the emotional connection between advocates and their shared mission, fortifying the foundation of your advocacy efforts for sustained success.

Here are some suggested ways to show your appreciation:

  • Send sincere and personalized thank-you messages that go beyond generic expressions of appreciation. Whether through handwritten notes, emails, or personalized social media shout-outs, individualized messages demonstrate that you value and recognize the distinct roles each person has played.
  • Create social media posts or graphics that highlight the contributions of specific individuals. Include photos that showcase the impact they’ve made.
  • Consider organizing an appreciation event to celebrate and thank your supporters. This could be a virtual gathering, a webinar, or an in-person event.
  • Launch a gratitude campaign that spans the month. Encourage supporters to share their experiences and express gratitude to others within the community.

December: Reflect and Plan for the Future

The year’s end offers another opportunity to reflect on your advocacy journey and evaluate its progress.  Dive into the data and metrics associated with your advocacy initiatives. Assess the reach and impact of your campaigns by analyzing social media analytics, website traffic, email engagement, and other relevant metrics. Identify patterns, trends, and areas of improvement to inform future strategies.

Reflect on both successes and challenges encountered during the year. Identify the strategies that resonated most with your followers and contributed to success. Equally important, analyze the challenges faced and the lessons learned. Use this information to refine your approach and address any recurring issues in the future.

Finally, develop a strategic plan for the upcoming year based on the insights gained from your reflections and analyses. Outline specific goals, action steps, and timelines. The key to elevating your advocacy in 2024 will be consistency, commitment, and collaboration. Following this guide will  give you the framework to take your advocacy to new heights.  Let’s work together to make a positive difference in the new year.

Expert Advice | Living and Thriving With an MPN

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Expert Advice | Living and Thriving With an MPN from Patient Empowerment Network on Vimeo.

Is it possible to live well and thrive with a myeloproliferative neoplasm (MPN)? Dr. Naveen Pemmaraju, an MPN specialist and researcher, shares key advice for patients, stressing the importance of taking an active role in learning about their disease and communicating with their team to manage common symptoms and side effects. 

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju. 

 

Related Programs:

Thriving With an MPN: Advice for Setting Goals and Making Treatment Decisions

Thriving With an MPN | Advice for Setting Goals and Making Treatment Decisions 

 Common MPN Symptoms | What Are They and How Are They Managed

Common MPN Symptoms: What Are They and How Are They Managed?

 Common MPN Treatment Side Effects | Strategies for Management

Common MPN Treatment Side Effects |Strategies for Management

Transcript:

Katherine Banwell:

In your experience, what does it mean to thrive with an MPN?  

Dr. Pemmaraju:

Well, I really love that phrase so much because it’s meaningful to me.  

You know, you’re talking about something that resonates with me and my patients, which is not just living with the MPN, but you’re talking about thriving with an MPN. That’s so resonant to us. I think really, I would go for three parts to that.  

One is that it’s an acknowledgment or a complete understanding of the disease. So, not denial, the opposite of denial, whatever that is, Katherine. So, understanding as much as you can about the disease which is, I encourage people to Google, look up on the internet. I just, what I want you to do is couple that with talking about it in context with your provider. I think the worry that people have is you’re at your home midnight, you’re Googling stuff, it may or may not be right. So, anyway, so just do that, but then bring the information to the next visit. So, fully understanding and learning as much as you can in your own way. Number two is to be able to have a quality of life that is not just living with the disease, but actually being successful at your relationships, your work, whatever it is that brings you meaning and joy in life. And that sometimes has to do with the MPN paradigm, sometimes has to do with the other stuff we said.  

But I think, doing that, not despite the fact that you have the MPN, but acknowledging it with that, right? And then I think the third aspect is, if you have some way or some platform to be able to express yourself with the MPN because it’s such a rare disease, we think maybe only four out of 100,000 people worldwide get these. A lot of patients, not for everybody, by the way, but a lot of patients are thriving on support groups. 

It used to be you have to be in person, that’s very difficult to do with rare diseases. But now online, social media, a lot of different ways to get involved. Whether someone’s an introvert or an extrovert, whether someone wants to be private or public, all those things are hugely important, so it’s a personal decision. But for many, they want to get out there, and it’s not necessarily this scientific information exchange, although that’s good. But the support and encouragement and comradery of talking to other patients about what we’re talking about.  

It is, in fact, a little bit more facile to do it with the more common diseases, breast cancer, all of these things. And it’s much more difficult, social media online has opened that up. So, to me, I think that’s a kind of mix that I’ve been seeing in my patients. And that leads to empowerment. It leads to taking control of the things that can be controlled, leaving the things that can’t be controlled to what needs to happen. And then an understanding and anticipation of things that may happen in the next few visits, in the next few years. I think that’s how people can thrive with these MPNs.   

Katherine Banwell:

Dr. Pemmaraju, When it comes to living and thriving within an MPN, managing disease symptoms and treatment side effects is a big part of that. How can symptoms and side effects impact life with an MPN?  

Dr. Pemmaraju:

Katherine, I’m glad you asked about that because I think before we get into the science and the pathobiology and all these complex things, it really starts with the patient. And as you and your team and others have really noted, the MPN for many of our patients, it is a chronic, often lifelong journey. And we really need to reemphasize in this modern era, the patient-centered experience and the caregiver experience.   

And so I would emphasize a few things. One is that our MPNs are oftentimes so-called invisible diseases to other people. So, this phrase that just really is tough for us to hear for our patients and our loved ones, “Oh, you don’t look like you’re sick. You don’t look like you have cancer.” So, it emphasizes the internal part of the internal medicine, that’s one.

Number two, it reminds you that you cannot tell on the external what kind of a war, a cytokine war that is going on inside of a patient. And so even though the blood counts are normal, the spleen is okay, the treatment paradigm is going okay, we don’t know what’s really going on. So, that’s why our great friend and colleague Ruben Mesa invented and pioneered the MPN symptom burden to really nail down what’s going on.  

And then third is our treatments, Katherine, our treatments, while overall halting or stopping or helping the MPN can then introduce a whole other round of toxicity, side effects, and so we need to manage that.  

So, both the disease itself and the treatments, two separate entities, and that’s what we need to be monitoring in the clinic.  

The Patient Advocate’s Guide to Social Media Content Planning

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In our role as patient advocates, social media is an important tool that we use for sharing information, connecting with others, and amplifying our voices. Managing social media effectively can be challenging in and of itself, but it can be even more challenging when you are undergoing cancer treatment. To minimize your workload, content planning is key.

In this article, we will explore why social media content planning is a valuable strategy and how to do it effectively.

Why You Should Plan Your Social Media Content In Advance

Creates Consistency:

Content planning allows you to maintain a consistent presence on social media. Consistency builds trust and makes your advocacy efforts more visible.

Algorithm Visibility:

Social media algorithms love content that engages users consistently. By keeping a consistent schedule and planning your posts in advance, you’ll get more visibility from the algorithms.

Proactive Advocacy:

By planning your content, you position yourself as a proactive advocate. By getting ahead of key moments, awareness campaigns, and significant dates, you can amplify your advocacy message rather than reacting haphazardly.

Enhances Collaboration:

When working with other advocates on a campaign, content planning keeps everyone on the same page. This simplifies collaboration and ensures a consistent message across all channels.

Alleviates Burnout:

The demands of patient advocacy can be emotionally and mentally taxing, especially when managing health issues. Content planning allows you to allocate specific blocks of time for content creation and scheduling, freeing you from the pressure of daily posting.  With a well-thought-out calendar, you can work at your own pace and avoid burnout.

Now that we’ve explored the rationale behind content planning, let’s look at how to implement it effectively.

1. Create a Content Calendar

Creating a content calendar is the foundation of good content planning.

Here are some tips to help you create your content calendar:

Choose a Calendar Format

Choose the format that will work best for you. You can use digital tools like Google Calendar, Microsoft Excel, or specific social media management platforms. Alternatively, a physical planner or whiteboard can work if you prefer a tangible approach.

Set a Time Frame

Determine the time frame your content calendar will cover. Ideally, plan your content at least one month in advance. This allows time for content creation, revisions, and scheduling, reducing last-minute stress.

Identify Key Dates and Events

Note down key dates, events, and awareness months relevant to your advocacy cause. These can include World Health Days, national observances, or local events.

Include a mix of both evergreen content (relevant year-round) and timely content (related to current events or trends).

Plan Content Distribution

Mark on your calendar how you’ll distribute your content across different social media platforms. Each platform may require slightly different content formats and messaging to optimize engagement.

Maintain Flexibility

While a content calendar provides structure and helps you plan ahead, advocacy often revolves around societal, political, and healthcare issues that are subject to rapid change. Emerging issues may require you to pivot your content strategy to address the most pressing matters, ensuring that your advocacy remains relevant and impactful. When creating your content calendar, leave some slots open or designate them as “flexible.” These slots can be used for addressing emergent issues as they arise without disrupting your overall schedule.

2. Allocate A Mix of Content Types

Decide on the types of content you’ll create. You will add more depth and dynamism to your social media advocacy by diversifying your content.

Here are some ideas for a mix of content types you can use:

  • Use text-based posts to deliver key takeaways, prompt discussions, or provide brief updates. Craft compelling headlines and captions to capture attention.
  • Share impactful images, illustrations, or memes that resonate with your advocacy cause.
  • Create video content that highlights personal stories, interviews experts, or explains complex concepts. Pay attention to video quality and subtitles for accessibility.
  • Pose questions related to your cause, gather feedback, and involve your audience by using poll features. Share poll results and discuss their implications in follow up posts.
  • Curate informative articles that educates your audience about relevant topics, research findings, or treatment options.

3. Plan Posting Frequency

Determine how often you’ll post on each platform. Different social media platforms have varying recommended posting frequencies due to their algorithms and user behaviors. For instance, X’s (formerly known as Twitter) fast-paced nature often requires more frequent updates.

Focus on the quality of your content rather than sheer volume. Posting too frequently with low-quality or repetitive content can lead to audience fatigue and unfollows. It’s always better to offer valuable, relevant content that resonates with your audience.

4. Schedule Posts

The ability to schedule your social media content in advance is a game-changer for effective content planning. You can schedule posts for specific dates and times, ensuring your content goes live when your audience is most active. For advocacy with a global audience, you can schedule posts according to different time zones, ensuring your content reaches a worldwide audience at the right times.

There are many social media management tools, such as Buffer and HootSuite, that support a variety of platforms, including Facebook, Twitter, Instagram, LinkedIn, and others. This multi-platform capability simplifies the task of managing content across different channels. Rather than posting manually at specific times, you can plan and schedule content for multiple platforms all at once.

5. Monitor and Adapt

Continuously monitor the performance of your content calendar. Use analytics to track engagement, reach, and other relevant metrics.

Here are some key metrics to track:

Engagement Metrics:

Likes, shares, comments, and retweets. These indicators reflect how actively your audience is interacting with your content.

Reach and Impressions:

How many people are seeing your content (reach) and how often it’s being displayed (impressions). This data gives you an idea of your content’s visibility.

Click-Through Rates (CTR):

The percentage of people who click on links within your posts. CTR is crucial for tracking conversions, such as website visits or signing up for newsletters.

Armed with these data-driven insights, spend some time analyzing which posts or content types consistently perform well. Understand what elements contribute to their success, and consider creating more content in a similar vein. Conversely, if certain posts or content types consistently underperform, reassess their relevance and value. Are there adjustments you can make to improve their engagement potential?

In summary, dedicating time to strategic content planning transcends good practice; it stands as the cornerstone of your online advocacy. As outlined in this article, taking a systematic approach to your social media content can enhance your advocacy efforts. Follow these steps and incorporate these tips into your online advocacy to achieve even greater success in the future.

From Awareness to Advocacy: How Social Media Platforms Raise Cancer Awareness

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Social media is a powerful tool. While most of us use it casually or for entertainment purposes, it’s also a major resource for businesses and organizations.  

But, social media isn’t just a way for you to keep in touch with family and friends or to check out your favorite businesses. It can also be used as an incredible opportunity to spread awareness about important issues and causes – including cancer.  

Because of the community aspect of social media, it’s not only easy to spread awareness, but it’s possible to mobilize local communities across the world for advocacy.  

With that in mind, let’s look at how various social media platforms contribute to raising cancer awareness, and the impact they have on empowering individuals, advocacy groups, nonprofits, and more to become advocates for cancer-related causes.  

Recognizing the Power of Social Media 

Chances are, you’re on at least one social media platform. Many people are active on several. Almost everyone you know is probably involved with at least one, too. But, don’t just look to yourself or your inner circle to consider the power of these platforms. When you take a look at the numbers and start associating them with the spread of awareness, you’ll see just how powerful these platforms can be. Today’s top social media sites are:   

  • Instagram
  • YouTube
  • Facebook
  • Twitter
  • TikTok 
  • Pinterest 
  • Snapchat 
  • LinkedIn 

The interesting thing about these platforms is that they have different audiences. There’s some overlap, of course, and there is no age limit on who can use different social media sites. But, when you’re trying to spread awareness and boost advocacy, you have to consider who you’re talking to. For example, platforms like TikTok and Snapchat are going to feature a younger demographic.

That’s not a bad thing, it just might require you to adjust your message to different audiences. Your main goal, with any platform, should be to provide real, accurate information that builds trust. Unfortunately, there is so much misinformation out there nowadays, and every time it pops up on a social media platform, some people might believe it, setting back true awareness even further.  

Building Communities Through Social Media 

Interacting with your family and friends on social media is great, but if you’re trying to spread awareness about cancer, it’s important to branch out. Social media gives you the opportunity to connect with complete strangers and end up forming a community of friends – even if you’ve never met in person.   

There are plenty of online communities dedicated to awareness and advocacy, even from the American Cancer Society. Some of the largest organizations featured by the ACS include CaringBridge, Cancer Survivors Network (CSN), the National Cancer Information Center, (NCIC), and Reach to Recovery. Any of these options can help you find the support you deserve in an online setting, and while they each have their own website and/or app, they also have a strong social media presence that can help you connect with others who might be dealing with the same health issues.  

But, starting a grassroots community on social media can sometimes be more powerful. It’s honest and real without any hoops to jump through. People can invite their own friends and family, and it can continue to grow via word of mouth. It will give people the opportunity to speak freely, share their stories, and educate others along the way.   

While building a community is a great way to communicate with others, you can go further than that by connecting with caregivers or creating a safe place for caregivers to offer their services. You can create a community that fosters support throughout the diagnosis and treatment process. You could even provide regular information about cancer research and opportunities for treatment – if you’re willing to back up every claim with the help of healthcare providers.   

Your community could even be a source of comfort and inspiration for caregivers. They often need support and encouragement, even if it’s from a group of people online that understand what they’re dealing with every day.  

If you want your social media communities to grow, don’t hesitate to do a bit of marketing. Your goal should be to attract attention and get people talking. Once your community starts to grow, some of the most important rules for helping it to thrive include: 

  • Being responsive
  • Empowering followers to take action
  • Engaging with user-generated content 
  • Staying on-brand and being relatable

It’s also important for your community to feel safe and heard. It’s not always easy for people to open up online, and if you want nonprofit or advocacy groups to join you, they need assurance that their information and data will be kept safe. That’s especially true if they’re providing you with personal health stories or giving you financial information to boost awareness or grow your community.  

If you’re going to be in charge of an online community, be sure you understand the basics of cybersecurity. Things like installing risk-based management systems, utilizing advanced email security, and requiring multi-factor authentication to log in to certain back-end sites will help to keep you safe while protecting the information and data of your community.  

Taking Things Offline 

Building awareness via social media is only the first step. It’s an important one, and you could end up doing more for yourself and other people with cancer than you ever expected. It’s easy for some people with cancer to feel alone, or even hopeless. By fostering a community on social media, you can provide them with support, friendship, and understanding. You can connect them with others who might be in the same situation, or people who have beat the disease and are on the other side of it, enjoying life.  

But, at some point, it will be time to encourage the community you’ve built on social media to step out into the real world and take action.  

Advocacy in the real world takes many forms. It can be something as simple as volunteering for a support group, listening to and sharing personal stories, or even visiting those who have recently been diagnosed with cancer.   

When you’ve used social media to build a community, though, you can go even bigger with your advocacy efforts. Create events on your platforms designed to educate the public about cancer. They might include things like marches or gatherings, speaking at community centers, or attending events at schools or healthcare facilities to hand out accurate information and connect with others in person.  

You can also encourage your social media friends and followers to advocate on their own within their communities. The beauty of social media is that it spreads all over the world. People can help by:   

  • Participating in fundraisers
  • Donating money to a cancer relief group
  • Speaking with community groups
  • Communicating with local media 
  • Changing public policy

Again, social media is a powerful tool. While we might often view it as something fun, or even something we use to pass the time, it can be used for good – and even to change the world. Keep these ideas in mind to go from awareness to advocacy, and you could end up being a social media superhero.  

Transforming Your Social Media Presence: 5 Steps to Foster Inclusivity and Advocate for All

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In the realm of patient advocacy, inclusivity and accessibility are critical to ensuring everyone’s voice is heard, respected and empowered. With a few simple steps, you can transform your social media presence into an inclusive platform that promotes and advocates for all individuals’ rights. A digital space that is inclusive not only amplifies diverse voices but also fosters understanding, empathy, and support.  

Our social media content has the potential to make a difference and ensure everyone, regardless of background or identity, feels welcome and empowered. Follow these five steps to create a more inclusive and accessible online space for your community. 

1. Choose accessible fonts

When creating digital content, choose fonts that are clear and easy to read, especially in smaller sizes.  The fonts shouldn’t be overly decorative or ornate, as these may be hard for some people to read. In general, Sans-Serif fonts, such as Arial, Verdana, or Open Sans, are considered more legible for digital content. They have clean lines and lack the small embellishments (serifs) found in serif fonts. This simplicity contributes to improved readability, particularly in smaller font sizes.  

Font size is another factor in enhancing readability. Make sure your font sizes are large enough to be easily read on different devices and screens, including smartphones and tablets. A minimum font size of 14 pixels is generally recommended as a starting point for body text. However, consider increasing the size for titles, headings, or important information to improve visibility and ensure that the content stands out.

2. Use alt text for images

Alternative text (alt text) provides a text-based description of the image content so that people using screen readers can understand and engage with your social media content.  Use alt text that is concise, but also provides enough information to understand the image’s message.  A general guideline is to keep it under 125 characters. Think about the essential information someone needs to know if they cannot see the images. Be sure to include key information in the alt text if the image contains text or data.  

Here’s an example of alt text for an image: 

Alt text: “A group of diverse friends laughing and enjoying a picnic in the park on a sunny day.” 

In this example, the alt text provides a concise yet descriptive overview of the image. It conveys the main elements of the image, such as the diverse group of friends, the activity they are engaged in (picnic), and the setting (park on a sunny day).

3. Add captions and subtitles to videos

Videos on social media platforms can be made more accessible through the addition of captions. Many social media platforms offer features that allow you to caption your videos, either by uploading caption files or manually entering captions during the editing process. Caption files contain timed text information that corresponds to the audio in your video, ensuring that the captions appear at the right moments. Two common caption file formats are SubRip (.srt) and WebVTT (.vtt), which can be created using captioning software or online captioning tools. 

To enhance the readability of captions, make sure they are displayed clearly and have good contrast against the video content. Use a legible font that is easy to read, even in smaller sizes. Additionally, ensure that the text is large enough to be easily read on a variety of devices and screen sizes. This consideration is especially important as many users access social media platforms through mobile devices. 

After adding captions, review and edit them for accuracy (no spelling or grammar errors) and synchronization. Captions should be in sync with the video’s content to provide an optimal viewing experience.

4. Write simply and clearly

When it comes to crafting social media content, use simple and straightforward language that can be easily understood by a wide audience. Avoid using jargon, or overly technical terms that may exclude or confuse some of your followers.  

Consider the demographics and preferences of your audience when choosing the language and tone for your social media content. Tailor your messaging to ensure that it matches their language proficiency level, cultural background, and any potential sensitivities. 

5. Use inclusive language

Choose words and phrases that are inclusive and respectful to all members of your audience. Avoid any language that discriminates against or excludes specific groups of people based on characteristics such as race, ethnicity, religion, gender, sexual orientation, or disability. Stay informed about evolving language and societal norms to ensure your content remains inclusive and respectful. Be open to feedback and be willing to make adjustments to your language choices when necessary. 

Recognize that individuals from diverse backgrounds may interpret your words differently. Be aware of cultural sensitivities and avoid language that may unintentionally offend or exclude certain cultural groups. Research and understand cultural nuances to ensure your captions are respectful and inclusive. 

Making your social media content more accessible and inclusive is not only the right thing to do, but it also opens up new opportunities to connect with a wider audience. By implementing the practices above, you can create a more inclusive and welcoming digital space where everyone feels valued, understood, and included. 

Elevate Your Online Presence:

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A 12-Month Plan To Increase Visibility and Amplify Your Advocacy in 2023

Are you looking to enhance your online presence and make your cause more visible in the coming year? 

By following the monthly suggestions in this article, you can strengthen your online presence, increase your cause’s visibility, and achieve your goals.

Get ready to take action and make a difference in 2023!

January

Set SMART Social Media Goals

Let’s start the new year off by setting some SMART social media goals. 

Identify what you would most like to accomplish with social media this year, and then set specific and actionable goals to achieve them. To become a reality, a goal should be specific, measurable, attainable, realistic, and time-bound. We call these SMART goals. By setting SMART social media goals, you’ll be able to focus your efforts and measure your progress in a clear and meaningful way.

Here’s how to make a goal SMART:

Specific —the more specific your goal is, the easier it will be to see what you’re trying to accomplish. As an example, let’s say you set a goal to increase your Instagram followers by 10%.

Measurable —  how will you measure success? Using the Instagram example of growing your Twitter followers by 10%, you can measure your progress by checking your follower numbers.

Attainable —  do you think your goal is attainable? Consider whether your goal of achieving 10% Instagram growth is realistic (or whatever goal you have set for yourself).

Relevant —  social media goals need to be relevant.  Is Instagram the most effective platform to achieve this goal? Is another platform more likely to help you grow followers?

Time Specific — lastly set yourself a deadline for your goal, such as achieving 10% more followers by the end of the month.

February

Perfect Your Social Profiles

This month, take some time to review each of your existing social media profiles and ask yourself the following questions:

  • Are the quality of my profile picture and cover pictures consistent across all platforms?
  • Do I have a complete bio and about section? Do they accurately describe me?
  • Is my bio keyword-rich so that others can easily find me?
  • Is my social media handle consistent across all platforms?
  • Are my contact information and website links prominently displayed?
  • Do I have any outdated information pinned at the top of your timeline?
  • Is there any information that needs to be added or changed?

March

Conduct a Social Media Audit

An audit is a great way to figure out where you’re at with social media and what you can improve.

To start, you can create a spreadsheet with columns for each social media platform, such as Facebook, Instagram, Twitter, etc. In each row, you can include the account name, username, and any other relevant information.

Next, track your posting activity for each account by noting the date and number of posts for each day or week.

Finally, analyze the results by looking at metrics such as the number of likes, comments, and shares for each post, as well as the overall engagement and reach of each account. This will give you a sense of which platforms are performing well and which may need improvement. Based on the analysis, you can adjust your strategy for each platform to optimize your results.

Want to dive deeper? Download my step-by-step guide to conducting a social media audit at http://bit.ly/3pvjVa5

April

Conduct a Content Audit

The purpose of a content audit is to evaluate and analyze all your existing content to determine what’s working and what’s not. 

By conducting a content audit, you can identify gaps in your content strategy and make more informed decisions about future content.

 Here are the steps to conduct a content audit:

  1. Collect all of your existing content, including blogs, social media posts, videos, images, etc.
  2. Sort and categorize your content by topic, format, and date.
  3. Assess the performance of your content using metrics like engagement, shares, and views. Consistency, relevance, and quality should also be considered.
  4. Find gaps in your content strategy and identify patterns in your analysis of content. Videos, for example, may be particularly popular with your audience, so you may want to produce more videos.
  5. Gather all the information you’ve gathered during the audit into a spreadsheet or document.
  6. Use the information you’ve gathered to create an action plan for your content. Consider creating more of a certain type of content, improving the quality of your content, or focusing on a certain topic.

May

Create a Content Calendar

Using April’s content audit as a springboard, create a content calendar that outlines the themes and topics you’ll be focusing on in the upcoming months.

A content calendar will help you stay on track with your social media goals and ensure that your content is consistent and relevant. Use a mix of text, images, and videos that are tailored to the platforms you are using. Review your calendar regularly and make adjustments to your posting schedule as news and events arise, to ensure the content remains current.

June

Repurpose Your Content

Review your content audit and determine if any content can be repurposed

By repurposing content, you can increase engagement, reach new audiences, and gain more mileage from your content. In addition, you will be able to refresh old content and make it more relevant.

Here are a few ways to repurpose content:

  1. Make social media posts using bite-sized chunks of information from long-form articles.
  2. Highlight quotes in your blog post and turn them into a quote graphic using a tool like Canva, Quotes Cover, or Adobe Spark.
  3. Video is the most engaging form of content. Break down a popular blog post into video tips.
  4. An audio podcast episode can be turned into a video by adding images, text, and animation.
  5. If you have a video that performed well, you can create a blog post or podcast episode that summarizes the main points.

July

Create Visual Impact

Let’s get creative with our visual assets this month. 

With the help of your visual assets, you can create shareable and engaging content that will help you build your online presence and raise awareness for your cause. Additionally, this is a great opportunity to connect emotionally with your audience and stand out from the crowd.

These are a few ideas to get you started:

  1. Using a tool like Canva or Adobe Spark, create custom images that can be used to create social media posts, blog headers, and more.
  2. Use an infographic maker to create infographics that explain complex information in an easy-to-understand way.
  3. Create shareable images by using quotes from thought leaders in your field.
  4. Add a touch of humor or personality to your social media posts with GIFs created with tools like Giphy.

For more tips read: 

Patient Advocacy: 6 Tips for Making A Visual Impact on Social Media

August

Host a Live Virtual Event

Hosting a virtual event or webinar can build community and engage supporters.

Connecting with your audience in real-time can help you create an interactive and engaging experience. Participation and engagement can also be encouraged with interactive features like polls, Q&A sessions, and breakout rooms. 

Tips for hosting a successful virtual event:

  1. Decide what you want your event to accomplish and plan your content accordingly.
  2. Select a platform that allows you to host your event and engage with your audience in real-time.
  3. Encourage people to register for your event by using social media channels, email, and other marketing channels.
  4. Take advantage of interactive features during the event, such as polls, Q&A sessions, and breakout rooms, to engage your audience.
  5. After the event, follow up with attendees to thank them and to provide them with additional information or resources.
  6. If possible, record and share your event. People who couldn’t attend can watch it later.

September

Build Your Authority on LinkedIn

LinkedIn is flourishing right now and has released some new features to make it an even more engaging place for users.

Discover how top patient advocates are using LinkedIn to build their thought leadership. You’ll find them consistently publishing thought-provoking commentary and original think pieces and engaging with industry leaders. As with all social media, LinkedIn allows you to compete on an equal footing. Use your LinkedIn profile to build online visibility this month to take full advantage of these opportunities.

You can learn more here:

Patient Advocacy: How To Optimize Your LinkedIn Profile

Patient Advocacy: How To Boost Your Visibility on LinkedIn

October

Increase Twitter Engagement

Twitter might not be as popular as Facebook, Instagram, or YouTube, but it still has a large following among healthcare professionals and patient advocates.  

Using Twitter effectively can help you stay informed, encourage collaboration, and amplify advocacy.

Follow these steps to get the most out of Twitter:

  1. Follow relevant accounts and hashtags to stay on top of research, news, and developments.
  2. Build relationships by joining Twitter chats and retweeting content.
  3. Promote your cause by sharing upcoming events and petitions.
  4. Share information and resources that can help educate people about your cause.
  5. Make your content discoverable with hashtags.
  6. Live-tweet events, conferences, or other activities related to your cause. This will allow you to provide real-time updates and engage with a wider audience.

More tips can be found here:

Patient Advocacy: How To Increase Twitter Engagement

November

Try Some New Tools

By taking advantage of the right tools, you can improve your social media activities and maximize your online time.

I have put together a list of my favorite social media apps that I use on a daily basis. The tools in this list will let you edit images, create graphics, and schedule social media posts. Every tool listed is free, so you can try it out before deciding if you want to upgrade.

Check out the list at:

Patient Advocacy: 21 Tools To Help You Achieve More With Social Media

December

Evaluate Your Progress

As the end of the social media year approaches, it’s time to evaluate and measure your progress.

Here are a few steps to help you evaluate your social media efforts over the past 12 months:

  1. Review the goals you set at the start of the year to see how many of them you achieved.
  2. Track your progress with tools such as Google Analytics and native social media analytics. Some key metrics to track are followers, social media channels driving the most traffic to your site, comments, and shares. Analytics and measurement tools are usually available on social media platforms so you can monitor their performance.
  3. Determine what types of content performed well over the last year and what didn’t. By doing this, you’ll be able to figure out what resonates best with your audience. Pay attention to what’s working for you – do more of it – and drop things that aren’t generating much engagement.
  4. Make a plan for the future based on the insights you gained from your evaluation. Set new goals for the year and identify areas for improvement.

By following these tips and strategies, you can build a strong online presence, increase visibility for your cause, and reach your goals over the coming months. 

Here’s to your social media success!

Patient Advocacy: How To Increase Twitter Engagement

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While Twitter might not be as popular as other social networks such as Facebook, Instagram, or YouTube, it nevertheless has a large following among healthcare professionals and patient communities. Twitter has the potential to be a powerful tool that keeps you informed, encourages collaboration, amplifies advocacy activity, and raises awareness of your cause.

When Twitter first launched in 2006, gaining traffic from it was easy. Since there wasn’t much competition among users and the concept of tweets was still relatively new, people were curious to click on the links users tweeted.

Today, gaining followers and increasing engagement is harder. But there are ways once you understand how Twitter’s algorithm works. In this article, we’ll cover some tips and techniques you can use to improve your engagement rate and make a bigger impact with your advocacy campaigns on the platform.

How Twitter’s Algorithm Works Today

1.Relevancy

Since 2018, Twitter’s main timeline is no longer chronological. This means an older tweet may appear alongside a tweet from two minutes ago and one from ten minutes ago. Twitter’s algorithm sorts the tweets you see based on your interests, which is why Twitter may sometimes show you a tweet from someone you don’t follow.

What this means for you: Because Twitter shows you content it thinks will be of interest to users, you should check that the people you follow and those who follow you share the same interests.

2. Timeliness

Twitter’s algorithm is heavily weighted by time so timing is one of the most crucial factors that influence how well your Tweet performs and how many people engage with your content.

What this means for you:  You need to post at a time when people are active online for a better chance of visibility. Based on research by social listening platform Sprout Social the best times to post on Twitter are around mid-mornings and mostly on weekdays (Central Time). This will of course vary depending on location. Therefore, it is best to experiment with your timings to discover what works best for you. By tweeting at various times, you can determine when your audience is most active on Twitter and use this information to identify the optimal  times to increase visiblity for your tweets.

3. Credibility

Twitter’s algorithm favors credible accounts. Even if someone doesn’t read a single tweet, they’ll see your bio. They will decide quickly whether or not to follow you when they do.

What this means for you:  In order to make your profile look credible be sure to fill out every detail, such as your profile photo, bio, location, credentials, and so on. Your Twitter profile should be regarded as an important part of your professional advocacy activities. When people encounter your online profile, what will be their first impression of you? What might motivate them to follow you?   Do you need a more professional picture to represent yourself online? Do you have an image for your header? As an example, you could use a picture of yourself holding a sign with a strong message. Maybe you’re working on a campaign or a project right now. In that case, why not include an image that represents this in the header.

How To Increase Your Twitter Engagement

We’ve looked at Twitter’s algorithmic elements, now let’s see how we can take advantage of this information to boost engagement on the platform.

What is Twitter engagement?

Simply put Twitter engagement is when someone engages with the content that you post. It includes:

  • Mentions of your Twitter handle
  • Comments on your Tweets
  • Likes of your tweets
  • Retweets of your tweets
  • Clicks on links you included in your tweets

Furthermore, Twitter followers and activity are positively correlated. A Twitter user who is active will have more followers, increasing the likelihood that they will be engaged.

What is a good engagement rate on Twitter?

Twitter’s average (high) engagement rate is currently 0.33 percent, significantly lower than that of Facebook, which stands at around 1 percent.

Engaging content is something people will see, like and retweet.  Early engagement is especially important. Tweets have a half-life of around 18-24 minutes, meaning that half of the engagement will be received in a little under half an hour. If your tweet doesn’t get much engagement within the first couple of hours, it won’t be shown to more people.

The following pointers will help you get the most out of your tweets, and if you use them consistently, you should see a boost in engagement.

Respond to engagement

The simplest way to get more engagement is to get in the habit of monitoring your notifications tab and responding to each person who @mentions, comments and retweets you. If you’re having trouble getting people to engage with you, be the one to start the discussion. Reciprocity is a big reason why people want to follow and interact with you. To start a conversation, ask a question, reference other accounts in your tweets, repost others’ tweets utilizing the quote tweet tool to add your own thoughts, or create a poll. Polls are a Twitter feature with built-in engagement – and not utilized as much as they could be.

Include a Relevant Hashtag

Hashtags, like Instagram, are an important aspect of Twitter usage. Tweets with hashtags have a 100 percent increase in engagement, according to Twitter’s own findings.

Tip: Visit symplur.com to find 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!

Take Part In Twitter Chats

Joining a Twitter chat is a fantastic way to meet new people and engage in conversation. People will come to know you if you attend a Twitter chat on a regular basis, and you’ll be able to swiftly create and grow your own network of supporters. Again, you can find a list of disease-specific chats at Symplur. A great place to start is by joining the Empowered Patient Chat  #PatientChat held every other Friday at 10:00 am Pacific / 1:00 pm Eastern.

Add Images To Tweets

You’ve surely heard this before, but it’s worth reiterating: images matter — a lot.  People connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. Adding visual appeal to your tweet is a smart way to make your content stand out among a sea of tweets. Not only does adding an image increase the visibility of a tweet, but tweets with images also get more retweets and likes (according to Twitter, a whopping 313% more engagement.)

The type of visual assets you can create include images, videos, infographics, quotes, and GIFs. Take advantage of the fact that you may add up to 4 images to your tweets (all you have to do is click on the photo icon after you’ve added your first image, then add up to 3 more images) and build a carousel of images to draw the reader’s eye.

Tip: Stick to the same colors, typefaces, and layouts in all of your photographs to establish a strong visual identity.

Reshare your best content

Twitter is a fast-paced environment where messages are quickly buried. As mentioned already because a tweet’s shelf life is so brief, you’ll need to publish your best content on Twitter several times to boost visibility. To find your top-performing tweets, use Twitter’s built-in analytics tool (analyticstwitter.com). It’s likely that if this content did well once, it’ll do so again.

Tip: Change things up by adding a powerful graphic, highlighting a crucial statistic, or converting a statement into a question. Experiment with publishing at various times and on various days to see how this affects your engagement rate.

Ask people to share your content

A simple “Please Retweet” can increase the likelihood that people will reshare your content. Yes, it sounds simple, but it works!

As always, thanks for reading. I hope you learned something new today.

Patient Advocacy: 6 Tips for Making A Visual Impact on Social Media

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When it comes to sharing your advocacy message visual impact is a key factor in creating more visibility for your cause and increasing online engagement. In an increasingly crowded digital landscape, where our minds are drawn more readily to content that catches our eye, images can break through the online content clutter to quickly communicate your message.

It stands to reason that the visuals you create and share online should set the right professional tone for your advocacy activities. To help you do this, I’ve put together a list of six tips to increase the visual impact of your social media posts, alongside a list of tools to help you create more professional-looking graphics.

1. Upload A High-Resolution Image

Upload larger high-resolution images to social media. When an image file is too small, it will stretch, resulting in poor image quality and pixelation. Pixelated images appear unprofessional and reduce the likelihood they will be shared by others.

2. Choose Clear Typography

Typography is made up of elements such as font type and size, kerning (white space between individual characters or letters), and tracking and spacing. Typography is important when it comes to making your content more understandable to your reader. Visit Google Fonts directory, a free tool to help you choose the best font for your graphic design.

www.fontsgoogle.com

3. Pick The Right Colors

Color design is an essential design element. Ask yourself if your color choice is easy on the eye. If you use a combination of colors do they complement each other? Complementary colors are those that are placed opposite to each other on the color wheel.

Keep your color palette simple. Don’t be tempted to use too many colors in your designs. Pay attention to the hue and saturation values of the chosen colors – lightening or darkening tones to convey more warmth or strength as needed.

Consider how color can elicit emotion, which can result in either negative or positive feelings. A vibrant red, for example, makes a design element more stimulating and is good for drawing attention, such as for a call to action button. Red, on the other hand, can have more negative connotations – red for danger. It’s also a difficult color to see, especially for those who are visually impaired. If you choose to use red in your designs do so sparingly and intentionally.

4. Make Good Use of White Space

This tip is all about learning to embrace white space in your design template. Make use of grids when laying out your design. Layout grids help designers position text and images in a way that looks coherent and easy to follow.

5. Adapt Your Images To Suit Each Social Platform

No one post fits every platform. Each social network has its own dimensions and your design needs to be adapted to fit. An image creation tool like Canva makes it super easy to create your image according to the dimensions of your chosen social channel.

6. Avoid Using Stock Photos

The best images to create connections online are authentic images. Try as much as possible to use your own photos and images in your design. That’s not to say you can’t ever use stock images, but be mindful of not turning to over-used, cheesy stock images.

Ten Tools To Create Professional Looking Graphics

1. A Color Story

This app lets you choose from a large selection of filters to make your photos stand out. Instead of filtering your photos to look all the same, A Color Story filters aim to enhance the color you’ve chosen in your composition. One very helpful feature of the app is that it lets you save your editing steps to reuse for future edits, which will save you time when batch-editing photos.

Acolorstory.com

2. BeFunky

There is so much you can do with this tool to enhance your visual assets, including creating collages, adding “one-click” photo effects (there are over 300 photo effects and filters to choose from), and an array of graphics (e.g. speech bubbles). The basic account is free to use and provides users with access to a library of 125 digital effects.

Befunky.com

3. Canva

Whether you want a Twitter post or Facebook profile picture, you can create them quickly using Canva’s drag and drop editor. Select from a number of pre-set designs, or create something from scratch.

Canva.com

4. Easil

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.

easil.com

5. Infogram

Infographics are a great way to present your data in a creative way and this free design tool makes it super simple to put together your own infographics.

Infogram.com

6. Life of Pix

Life of Pix offers free, high-quality images that are available for personal and commercial use. Each comes with a helpful color palette so you can plan your visuals accordingly.

Lifeofpix.com

7. Quotes Cover

Quotes Cover turns quotes or short text into images for social media and high-resolution images for posters or other print designs. It’s so simple to use. Simply enter your quote or text and then choose your preferred design elements, such as font, shadow effect, and color.

QuotesCover.com

8. Ripl

A mobile app that lets you create short animated videos with professionally designed templates. Ripl is integrated with the major social media platforms, so sharing your final video is easy. Once you’ve connected your social profiles to Ripl, you can post directly to Facebook, Facebook groups, YouTube, LinkedIn, and more. You can export your videos if you want to use them outside of your social media platforms.

Ripl.com

9. Typito

Typito allows you to make video content using its drag and drop tool, and add images, music and captions. Once you create your video you can export it into several formats, including landscape, square, etc. — giving you perfectly cropped videos for the platforms you use the most.

Typito.com

10. Unsplash

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.

Here’s to your social media success!

MPN Patient Shares Survivorship Tips, Recognizing Social Media Toxicity

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

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

See More From the MPN TelemEDucation Resource Center

Related Resource:

Transcript:

Julia Olff:

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

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

Expert Advice for Learning About Your MPNs Online

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Expert Advice for Learning About Your MPNs Online from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) patients safely learn about their condition online? Dr. Naveen Pemmaraju offers key tips for finding credible information and how to process MPN information with members of your care team.

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju, here.

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Transcript:

Katherine Banwell:    

Dr. Pemmaraju, you’re very active on social media, and patients often share information with one another. So, what advice do you have for patients to ensure online sources are actually credible?

Dr. Pemmaraju:         

Wow, great question. First thing I would say is I encourage everyone to get out there. so, that’s key opinion leaders, local physicians, nurses, pharmacists, patients, caregivers, everyone. But Part 2 is what you said is true. Most everything out there is noise. It could be garbage. It could be background. It could be misinformation. So, you do have to have some way to filter it.

I call it signal from the noise. That’s a common phrase that a lot of people on social media use. I guess three things that I would give as tips. One is don’t be afraid to read and get on there, but I would just say whatever you read, take it with a grain of salt, as you said, and just write everything down where you have it organized.

Number two, tend to gravitate towards known experts and known sources. So, for example, you mentioned that I’m on there. That’s great. Ruben Mesa, our great friend and colleague, etcetera, etcetera. So, if you know who the 10 or 15 thought leaders are on Twitter or social media, see what they’re saying directly. That’s nice because it’s straight from them to the public.

And then three is stick with the organizations and entities that are trusted sources. New England Journal of Medicine, ASCO, ASH, programs such as yourself, etcetera, etcetera, who are trying to put out there the latest and honest information.

Okay. So, now the fourth part, though, I think is the most important, which is what we said earlier, which is whatever you look up, discuss it with your doctor and your physician team. Period. Because no matter what research you did, no matter what patients groups you join, there might be something that either doesn’t apply to you, or worse, as you said, it could be actual misinformation, and it’s a red herring.

So, maybe find information, figure out a way to filter it, crosscheck it, and then bring it up to your doctor team. I think that’s a winning way for success with information nowadays.

Patient Advocacy: Ten Tips For Twitter Success

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

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

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

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

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

1.Make Your Profile Stand Out

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

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

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

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

Here are the recommended guidelines for header images:

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

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

2. Craft Your Bio

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

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

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

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

3. Follow The Right People

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

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

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

4. Create Twitter Threads

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

5. Shorten Your URL Links With Bit.ly

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

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

6. Use Hashtags Wisely

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

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

7. Add More Images To Tweets

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

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

8. Develop a Regular Posting Schedule

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

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

9. Join a Twitter Chat

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

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

10. Pin Your Best Content

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

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

Wrapping Up

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

Here’s to your Twitter success!

Patient Advocacy: 21 Tools To Help You Achieve More With Social Media

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Recently I had the pleasure of taking part in an Ask Me Anything #patientchat about social media (If you missed it you can catch the transcript here). I had forgotten how fast-paced a Twitter chat can be and given that social media is such a huge topic, inevitably I didn’t get to cover everything in that one hour.

One thing I really wanted to share but didn’t get a chance to go into in great detail is how useful it is to have some go-to tools to help you do more with social media. So I’ve put together this list of my own favorite social media apps. Whether you want to edit an image, create custom graphics or schedule your social media posts, there’s a tool here to suit your needs. Best of all, each of the tools listed are free so you can try them out before deciding if you want to upgrade to a paid tool or feature.

1. Adobe Express

A free suite of apps which allow both web and mobile users to create and share visual content such as posts for social media, graphics, web stories, and animated videos. adobe.com/express/create

2. Anchor

Anchor is an audio recording app for micro-podcasting, audio broadcasting, Q&As, and more. Features like sound clips and transcriptions make it simple to create audio for social media. Billed as “the easiest way to make a podcast, ever,” it lets you record a high-quality podcast, and distribute it everywhere (including Apple Podcasts) — all in one place. No fancy equipment or podcasting experience necessary, and it’s 100% free!

https://anchor.fm

3. BeFunky

There is so much you can do with this tool to enhance your visual marketing assets, including creating collages, adding “one-click” photo effects (there are over 300 photo effects and filters to choose from) and an array of graphics (eg speech bubbles). The basic account is free to use and provides users with access to a library of 125 digital effects. https://www.befunky.com

4. Biteable

A desktop video creation tool. You can choose from a selection of pre-designed templates or you can build your video from scratch yourself. Biteable hosts a large collection of video clips and images (many of these clips are included with the free plan) to add to your templates. It also provides simple animation and claymation sequences to help you produce engaging explainer videos in just a few hours. Biteable’s free plan allows you to create five projects per month and publish HD-quality video to YouTube and Facebook. https://biteable.com

5. Buffer

Buffer is my go-to tool for scheduling my social media updates and with the Chrome extension, you can schedule content easily while browsing. It lets you design specific posting patterns and schedules to optimize your online presence. It’s free to post up to ten updates to one social channel only per day— to post more updates to more channels and to access analytics you will need to upgrade to a paid plan. https://buffer.com

6. Canva

Whether you want a Twitter post or Facebook profile picture, you can create them quickly using Canva’s drag and drop editor. Select from a number of pre-set designs, or create something from scratch. You can also add elements such as custom icons, fonts, charts, animations and illustrations. https://www.canva.com

7. Easil

Easil is a simple, browser-based system 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. https://about.easil.com

8. Hemingway Editor

A proofreading tool which clears your text of all unnecessary copy. Just paste your text into the editor and you’ll get an analysis that highlights lengthy, complex sentences, adverbs, passive voice, and common errors. https://hemingwayapp.com

9. Infogram

Infogram is an infographic and data visualization tool. The Basic (free) plan is intended only for non-commercial use, such as personal projects, blogs and presentations, within the limits of fair use. It includes 37 chart templates and allows users to generate up to 10 three-page projects based on their data. https://infogram.com

10. Life of Pix

Life of Pix offers free, high-quality images that are available for personal and commercial use. Each comes with a helpful color palette so you can plan your visuals accordingly. https://www.lifeofpix.com

11. Lumen5

This is a cool tool that enables you to turn your blog posts into slideshow-type videos in minutes. The free plan includes unlimited videos, access to 10 million video files, and 480p-quality video with the Lumen5 watermark. You can also upload your own logo. Upgrading to the Pro plan ($49/month) lets you remove the Lumen5 branding, upload your own watermark and outro, and more. https://lumen5.com

12. Pexels

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 creative commons license. Use the site’s list of popular searches to find the most in-demand stock video. https://www.pexels.com

13. Pocket

I use Pocket to batch my reading of online articles. Whenever I find something interesting I save it to Pocket to read when I have more time to focus. You can also share interesting articles directly to Twitter and Facebook or schedule it to Buffer. I like the daily recommended reading list which always brings something new and interesting into my inbox. https://getpocket.com

14. Quotes Cover

Quotes Cover turns quotes or short text into images for social media and high resolution images for posters or other print design. It’s so simple to use. Simply enter your quote or text and then choose your preferred design elements, such as font, shadow effect, and color. https://quotescover.com

15. RiteTag

This is a useful Chrome extension which gives you instant feedback on your hashtag choices as you type them. It checks the hashtags you begin typing in real time and color codes them according to which hashtag will get the most engagement for you. https://ritetag.com

16. Ripl

A mobile app that lets you create short animated videos with professionally designed templates. Ripl is integrated with the major social media platforms, so sharing your final video is easy. Once you’ve connected your social profiles to Ripl, you can post directly to Facebook, Facebook groups, YouTube, LinkedIn, and more. You can export your videos if you want to use them outside of your social media platforms. https://www.ripl.com

17. Scoop.it

A super content curation platform that allows you to easily find and share unique, relevant content to your social networks, website or blog. The free version will allow you to monitor a single topic and use the content generated on up to two social media accounts https://www.scoop.it

18. Twitonomy

This tool provides detailed visual analytics on keywords and hashtags, top related hashtags and more. You can use it to export tweets to Excel, track clicks on the links in your tweets, and track the evolution of a particular hashtag over time.

http://www.twitonomy.com

19. Unsplash

Unsplash gives you access to a bank of 50,000+ free-to-use photos. All photos are licensed under Creative Commons Zero, which means you can copy, modify, distribute and use the photos for free, including commercial purposes, without asking permission from or providing attribution to the photographer or Unsplash. https://unsplash.com

20. Veed

Say goodbye to clunky video software and hello to one-click editing online.

With Veed, you can create and edit amazing videos, add subtitles, animations, audio and more. It works on your Windows or Mac computer, no software download or plugin required.

https://www.veed.io

21. WordSwag

A mobile application that turns your ideas, quotes, and content into attractive graphics that can be shared on social media.

http://wordswag.co

 

I feel sure you will find some tools in the list above to help you get more creative with social media and achieve more online.

Here’s to your social media success!

12 Actionable Tips For Social Media Success in 2021

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2020! What a year it was for all of us.  In the advocacy world, we saw an unprecedented shift towards online activities.  We relied on zoom calls, webinars and social networks to keep us connected and informed.  Where many organizations and individuals may in the past have used social media as an add-on to in person events, this past year saw the virtual world take centre stage, and with it the need for a stronger social media presence.

I spent the latter half of 2020 teaching social media skills to more patient organizations than I have at any other time in the past decade. The realization that mastering social media has become an essential advocacy tool was brought home to us more than ever this year.

With hope on the horizon that vaccination may bring us closer to something resembling normality again, it is yet unclear how long it will take before the old way of doing things resumes. It is predicted that for 2021 at least we will still be relying heavily on online activities in the advocacy world.

To help you strengthen your online presence and create more visibility for your cause in the new year, I’ve put together this list of 12 actionable tips you can put into practice over the coming months. By following these monthly prompts I predict that come this time next year, you will be able to look back with satisfaction on all you’ve achieved over the previous 12 months.

January

Set SMART Social Media Goals

Get your 2021 social media activities off to a flying start by setting some SMART social media goals for your online activities.

Goals are the forerunner to success. Ask yourself what you would most like to achieve with social media this year, and then set specific and actionable goals to achieve it. 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.

February

Conduct a Social Media Audit

Take some time this month to audit your social media activities. A social media audit is a great way to take stock of where you’re at and identify what you can improve on going forward.

Start by creating a simple spreadsheet and list all your social accounts, including those you set up but haven’t used in a while.  Audit how often you are posting on each platform and list which times you are posting and the results you are getting. How engaged is your audience with you on each of your social networks?  It’s a good idea to benchmark where your social activities are at so that when it comes to the end of the year you can look back and see what has worked for you.

Some further things to audit:

  • Have you fully completed your About sections on each network?
  • Are your biographical details up to date?
  • Do you need to include a new call-to-action?
  • Do your cover photos needed updating? Are you still showing that summer picture now that it’s winter?

Want to dive deeper? Download my step-by-step guide to conducting a social media audit at http://bit.ly/3pvjVa5

March

Perform a Content Audit

Look back at your ten most recent pieces of content — blogs, images, videos, etc. Which content worked best for you in terms of engagement (i.e. comments, shares, etc.)? Can you do more with this content?  For example, can you highlight some key statistics and share on social media in a more visual format?

What about the content you spent a lot of time creating which didn’t generate significant engagement? Ask yourself (or even better ask a friend)  if it’s immediately clear what message you are trying to convey.  Can you rework this content to make it more compelling – updating any outdated information, adding new research, refreshing images, etc.

April

Conquer Content Curation

The ability to curate credible content to share with our communities is a key skill for patient advocates. Hereditary cancer advocate, Amy Byer Shainman (@BRCAResponder) 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.

May

Develop an e-Newsletter

This month, consider developing an online newsletter. With the popularity of social media, you may think e-newsletters outdated, but nothing could be further from the truth.   While you can go for a few days without checking social media, most people check their email several times a day. E-newsletters can help you build relationships and credibility and keep your activities to the forefront of people’s minds.

If you blog, use an e-newsletter to send a digest of your most recent blog posts. “I would advise anyone who wants to increase readership to her/his blog to consider sending out a monthly or weekly email with links to new posts and possibly one or two older ones,” recommends breast cancer blogger Nancy Stordahl (@nancyspoint).  “I also share a couple of articles that have been in the news, or that I think might be of interest to my subscribers,” says Nancy.  “Sometimes I share something personal and I often bounce around ideas. I love my subscribers and always value their input!”

Even if you don’t blog, you can still keep your subscribers updated with the latest research and news from the advocacy world by sending a regular e-newsletter. You can also share links to these newsletters on your social media channels.

June

Create Visual Impact

This month is all about getting creative with your visual assets. Visual content is 40x more likely to get shared on social media than other types of content according to research. 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.

Check out my guide to creating professional looking graphics at https://bit.ly/3mYMzPe

Related: Patient Advocacy: 10 Ways To Create Share Worthy Content For Social Media

July

Build Your Authority on LinkedIn

Your LinkedIn profile is the cornerstone of your professional brand online. It’s so much more than a place to park your resume.

Take some time to identify how top patient advocates are using LinkedIn to build their thought leadership on the platform. You’ll find they are showing up consistently, publishing thought-provoking commentary and original think pieces and generating high levels of engagement with industry leaders.  The wonderful thing about LinkedIn, as with all social media, is the ability to show up on a level playing field. The same opportunities to build online visibility are open to all – so take full advantage of this by doing more with your LinkedIn profile this month.

Start by optimizing your Linkedin profile at http://bit.ly/2wTorK3

August

Tap Into The Power of SlideShare

Many of us who do speaking engagements have built up our own library of slide-decks over the years. This month dust off those decks and upload them to SlideShare.

SlideShare is the world’s largest professional content sharing community. Surprisingly, given how the platform is optimized for social sharing, including the ability to embed presentations, it’s often overlooked and underused. And because it’s owned by LinkedIn, it’s super easy to highlight your uploads on LinkedIn’s platform – giving your thought leadership a further boost.

Take time to create visually impactful slides – even if this means re-doing some of your original slides.

Boring slides don’t get many views. Make sure to optimize for mobile viewers with big, bold visuals and text that is readable on mobile devices. New to SlideShare? Check out these tips: http://bit.ly/2XcrsyN

September

Increase Facebook Reach

Despite privacy concerns, Facebook still reigns supreme in the advocacy world. However there’s a problem when it comes to making an impact on Facebook. When organic Facebook Reach (i.e. the number of people who see your content without paid distribution) is estimated to currently be as low as 1–3%, succeeding on the platform is more difficult than ever.  Take time this month to consider ways to increase your organic reach and boost engagement on Facebook.

Facebook recommends each post you create should include some type of creative, like images, GIFs or videos. Make sure these creative assets are high quality. Avoid using blurry images or videos or creative that doesn’t accurately reflect your message.

For more tips on increasing Facebook reach, go to http://bit.ly/3pydfIk

October

Get Creative with Instagram

When it comes to consistent engagement, Instagram (now owned by Facebook) is the number one social channel out there. Recent studies have found the engagement rate on Instagram Is 45% greater than on Facebook.  Instagram is the perfect platform to let your creativity run free and, in fact, even have some fun in the process.

If you’re new to Instagram there is a lot to learn. Check out my SlideShare deck to help you get started: http://bit.ly/3rDBKph

November

Become a Twitterholic

Twitter is a powerful tool to help raise awareness of your cause, keep current with research, amplify your advocacy activities, and build collaborative relationships. 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.  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.

Many people tell me they “don’t get” Twitter, but I would encourage you to give it a try. You don’t even have to tweet to take part – you can learn a lot from following the right people and listening.

December

Evaluate Your Progress

It’s the end of your social media year. Time to look back and evaluate how far you’ve come over the previous 12 months.

Some key metrics to track are the number of followers you attract and retain, which social media channels drive the most traffic to your website, the number of comments you get, and how many times your updates have been shared. Most social media platforms have their own basic measurement and analytics tools, which you can use to gain information about views and engagement. Take note of what’s working for you – do more of this – and consider dropping things that aren’t generating much engagement.

Here’s to your social media success!

Health Care and Social Media: Importance of Facing Their Challenges

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Social media has greatly influenced many aspects of our society, particularly healthcare. Through social networking sites, blogs, forums, and similar platforms, it has become easier for people to find health information and get the care they need.

But the use of social media in healthcare is not without challenges. Concerns over breaches of patient privacy, the abundance of unreliable health resources, violation of personal–professional boundaries, and many others have surfaced over the past years, which makes both the public and health professionals question the impact of social media on health care.

The Role of Social Media in Health Care

Social media is one of the most popular channels used by healthcare providers (HCPs) to communicate with their patients and promote health. In fact, 99% of hospitals in the U.S. have an active Facebook page. The use of other social networking platforms like Twitter and Instagram in healthcare is also on the rise.

Health education.

Perhaps the biggest benefit of social media in healthcare is information dissemination. It allows health institutions and organizations to share discoveries, research, health tips and recommendations, and relevant news to the people.

Patient care.

Another benefit of social media in healthcare is it helps providers build positive relationships with patients. Gone are the days when people will have to wait in line for hours to have a consultation with their doctors. Today, they can send queries or book an appointment online and get updates from their HCP. This, in turn, strengthens the trust between them and improve the patient experience.

Healthcare promotion.

83% of internet users or 93 million Americans have searched for health-related information online, ranging from mental health, disease management, immunizations, etc. Moreover, 60% of social media users trust the information shared by doctors and other health professionals. Because of this, care providers now utilize social media to promote their services.

Challenges

The online world is an open space. Everyone can upload information without verifying it, view someone else’s data, and in worst cases – steal someone else’s data. Managing social media can also be burdensome for healthcare providers who – as we know it – are some of the busiest professionals there are.

Patient data privacy.

HCPs take extreme caution in sharing information online, afraid that it patient’s privacy. To avoid this, all healthcare providers should adhere to the HIPAA Compliance which is a set of regulatory rules concerning the privacy, security, and integrity of confidential health information.

Social media management.

Healthcare professionals use social media to promote their services and provide better care to their patients. But managing social media is not easy. To reap its benefits, healthcare providers should keep their followers engaged, provide useful information, and respond to the queries of patients. All these take time, strategy, and commitment. For these reasons, many healthcare providers make use of all-in-one marketing platforms like Adrack that can automate social media campaigns, saving them time and resources.

Poor-quality information.

Information on social media circulates easily. While social media is a great channel for promoting health education, a lot of health information shared on various sites lack quality and credibility. Medical information may also be unreferenced or incomplete. It can also be changed by anyone.

Healthcare providers need to remind their patients that not all health information they see on social media is true. They should also guide them to peer-reviewed websites where all information is subject to quality control.

Concerns over professionalism.

A major risk in the use of social media in healthcare is the possibility of posting content that can damage the reputation of providers, students, and the healthcare institution as a whole. Physicians are very concerned that people might lose respect for them if they share inaccurate information or judge them if they share their personal opinion over certain topics. Many healthcare providers also fear that people might perceive them negatively through photos, comments, likes, and other social media activities. Ensuring that they are providing only relevant and appropriate information is the best way to avoid such issues and controversies.

Patient–HCP boundary.

Boundary violations can occur without the physician and the patient even knowing it. A lot of times, it’s the patients who initiate online communication by sending ‘friend requests’ to their physicians. Unknowingly, this violates boundary policies between healthcare professionals and patients. Rather than communicating on social media channels, HCPs should consider setting up a website to be used for sharing posts regarding medical events or services. This way, patients can follow updates in a more professional manner. Also, HCPs should refrain from using investigating the personal behaviors of their patients in making a clinical judgment, such as knowing whether or not they have quit smoking or are observing a healthy diet.

When used responsibly, social media can be a powerful tool to promote health education, build positive HCP-patient relationships, and improve healthcare quality.

“Fake News” Can Be Hazardous to Your Health

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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?