Tag Archive for: Marie Ennis-O’Connor

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

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.

Elevating Cancer Advocacy: 10 Strategies for Effective Information Dissemination

As patient advocates we not only want to educate and support cancer research and awareness, but we also want to inspire hope.  In this month’s article, I discuss 10 types of content that can help you communicate and disseminate information, advance cancer advocacy, and encourage and empower those affected by cancer.

1. Treatment Journey Timelines

Share informative timelines outlining the typical journey of a cancer patient from diagnosis to treatment and recovery.

What to share:

  • Key information about surgery, chemotherapy, radiation therapy, immunotherapy, and any other pertinent treatments.
  • Highlight the importance of support systems during treatment.
  • Address the common side effects associated with different treatments.
  • Include images that highlight the various stages of the journey, from diagnosis and treatment to recovery, providing a visual timeline of the cancer experience.
  • Conclude the timeline by exploring the phase of life after active treatment.

2. Visual Content

Use graphics, videos, or infographics to make your content more visually appealing  The human brain processes visual information much faster than text, making visual content not only more engaging but also more memorable. In addition to enhancing understanding and engagement, visual content is more likely to be shared across various social media platforms. People are more likely to share visually appealing and informative content with their networks, contributing to the dissemination of important medical information.

What to share:

  • Make complex concepts more accessible and easier to understand with infographics.
  • Live video streaming can be used to host interactive Q&A sessions and webinars with experts in the field who can answer questions and provide valuable insights. This real-time interaction provides valuable information as well as a more engaging experience for your audience.

3. Personal Stories

Use written narratives, images, and video testimonials to  describe the emotional and physical effects of being diagnosed with cancer.

What to share:

  • Explore the emotional roller coaster you experienced, detailing the shock, anxiety, and uncertainty that often accompany a diagnosis of cancer.
  • Share images that capture the visual aspects of the cancer journey.
  • Offer practical advice on managing the physical side effects of cancer treatment, such as nausea.
  • Share a range of coping strategies such as mindfulness techniques, support group recommendations, and mental health resources.
  • Highlight the importance of seeking professional counseling and the value of connecting with others who have faced similar challenges.
  • Acknowledge the ongoing challenges survivors may face, such as mental health concerns, or a fear of recurrence.
  • Offer words of encouragement and messages of hope. Remind others that they are not alone in their journey and that strength can be found in community and shared experiences.

4. Cancer Prevention Tips

As a cancer advocate, your aim is not only to raise awareness but also to empower others with practical advice that promotes a proactive approach to wellness and reduces the risk of cancer.

What to share:

  • Address common misconceptions surrounding diet and cancer, discussing evidence-based findings on the impact of various foods on cancer risk.
  • Provide practical tips on incorporating a balanced and cancer-preventive diet, emphasizing the importance of fruits, vegetables, whole grains, and lean proteins.
  • Provide actionable advice on incorporating regular exercise into daily routines, catering to various fitness levels and preferences.
  • Outline recommended screening guidelines for various types of cancer, stressing the importance of regular check-ups and screenings based on age, gender, and family history.
  • Collaborate with oncologists, researchers, and other cancer experts to discuss recent research findings related to cancer prevention. Address emerging trends, breakthroughs, and advancements in the field, providing your audience with up-to-date and credible information.

5. Clinical Trial Information

Clinical trials often explore novel treatments that may be more effective than standard therapies. By sharing information about ongoing trials, you can open doors for patients to access innovative and potentially transformative medical interventions.

What to share:

  • Start by providing educational content that explains the concept of clinical trials, their purpose, and their significance in advancing medical research. Break down the different phases of clinical trials, emphasizing how they contribute to the development of new treatments.
  • Acknowledge common concerns and misconceptions surrounding clinical trials, such as fear of receiving a placebo, uncertainty about side effects, or worries about being treated as a “guinea pig.” Provide clear, factual information to address these concerns and build trust in the clinical trial process.
  • Ensure that information is easily accessible to patients. Create user-friendly resources that list ongoing trials, their eligibility criteria, and contact information for trial coordinators.
  • Stress the importance of informed decision-making when considering participation in a clinical trial. Provide resources that guide patients on questions to ask, considerations to weigh, and how to engage in meaningful conversations with their healthcare team.
  • Emphasize the importance of diverse participation in clinical trials. Advocate for increased representation of various demographics to ensure that trial results are applicable to a broader population.
  • Establish partnerships with oncologists, nurses, research institutions, universities, and medical centers conducting clinical trials. Collaborate to amplify the reach of trial information and ensure that advocates are well-informed about the latest developments.

6.  Legislation and Policy Updates

By sharing  legislative changes related to cancer research funding, healthcare policies, and patient rights,  you can empower individuals facing a cancer diagnosis, ensuring that they are aware of their rights and can actively participate in their treatment decisions.

What to share:

  • Advocate for legislation that safeguards patient privacy. Stress the significance of maintaining the confidentiality of medical information and protecting patient data in the digital age. Help your audience understand their rights regarding the privacy of their health information.
  • Advocate for legislation that supports and emphasizes the active participation of patients in their treatment decisions. Share information on laws that empower patients to be partners in their healthcare journey, fostering a collaborative relationship with their healthcare providers.
  • Advocate for initiatives that promote transparent communication between healthcare providers and patients. Stress the importance of clear and understandable information, ensuring that patients have the knowledge needed to make informed choices about their care.

7. Conference Reports

Conference reporting facilitates the dissemination of the latest research, treatment updates, and policy discussions to a broader audience, which is a crucial aspect of cancer advocacy.

What to share:

  • Summaries of key sessions and presentations. Highlight significant findings, breakthroughs, and advancements in cancer research, treatment, and patient care.
  • Livetweet important points, quotes, and visuals to engage a wider audience.
  • Conduct interviews with keynote speakers, researchers, healthcare professionals, and fellow advocates. Gather their perspectives on emerging trends, challenges, and opportunities in the field of cancer.
  • Ensure that your conference reports are accessible to a diverse audience. Use clear language, provide explanations for technical terms, and consider different formats to accommodate various learning styles and preferences.

8. Cancer Awareness Days, Weeks, and Months

Compile a list of key cancer-related awareness days, weeks, or months throughout the year. These designated days are important for educating the public, destigmatizing the disease, and advocating for essential research funding.   Integrate these awareness days into your content calendar, dedicating specific time frames for planning, creating, and promoting content around each designated date.

What to share

  • Highlight significant dates such as World Cancer Day on February 4th, National Cancer Prevention Month, Breast Cancer Awareness Month, etc.
  • Plan focused campaigns during these dates, leveraging relevant hashtags and encouraging your audience to participate.
  • Develop a variety of content types, including articles, infographics, videos, and social media posts, to cater to different audience preferences. Ensure that your content is informative, emotionally resonant, and shareable.
  • Use relevant hashtags associated with each awareness day.
  • Provide educational resources including fact sheets, downloadable guides, and links to reputable sources. Empower your audience with accurate information to promote understanding and dispel myths.

9. Think Beyond Cancer

Thinking beyond cancer-specific days and aligning your advocacy efforts with impactful occasions like International Women’s Day can broaden the scope of your message and connect with a wider audience.

What to share:

  • International Women’s Day (March 8th): Highlight the impact of cancer on women’s health, emphasizing gender-specific cancers and advocating for gender equality in cancer research, treatment, and support.
  • International Day of Yoga (June 21st): Share information on how activities like yoga can complement cancer treatment, alleviate stress, and improve overall well-being.
  • World Mental Health Day (October 10th): Address the impact of cancer on mental health. Provide resources on coping strategies, discuss emotional aspects of cancer journeys, and advocate for increased mental health support.
  • World No Alcohol Day (October 2nd): Share information on the link between alcohol consumption and certain cancers, encouraging responsible drinking habits to reduce cancer risk.
  • World Osteoporosis Day (October 20th): Address the impact of certain cancer treatments on bone health. Provide information on how cancer survivors can maintain bone health and prevent osteoporosis.

9.  Interactive Content

By incorporating interactive content, such as online polls, information can be shared in a more dynamic and engaging way. Audiences are not only educated but also engaged and mobilized through a two-way interaction.

What to share:

  • Turn cancer awareness into an interactive learning experience by crafting polls that function as educational quizzes. Ask participants about cancer-related risk factors, symptoms, or prevention methods, providing instant feedback and valuable insights.
  • Combat misinformation and address stigma by using polls to confront prevalent myths about cancer. Create questions that challenge misconceptions, enabling participants to contribute to dispelling stereotypes and fostering a more informed and empathic online community.
  • Extend the impact of interactive content by promoting cross-platform engagement. Encourage followers to share poll results on various social media channels, multiplying the reach of awareness initiatives and fostering organic conversations about cancer-related topics.

I hope you’ve found these content suggestions helpful. Implementing these ideas can not only raise awareness about cancer but also inspire action, foster community, and contribute significantly to the advancement of cancer advocacy.

You might also like to read

The Patient Advocate’s Guide to Social Media Content Planning – Patient Empowerment Network (powerfulpatients.org)

Transforming Your Social Media Presence: 5 Steps to Foster Inclusivity and Advocate for All – Patient Empowerment Network (powerfulpatients.org)

Mastering Instagram for Patient Advocacy: 10 Tips for Success

Boasting more than two billion active users, Instagram provides an excellent platform for patient advocates to reach a wide audience and inspire change.

Here are 10 tips to help you achieve more on Instagram and make the most of your advocacy efforts.

1. Craft A Compelling Profile

  • Your Instagram profile is an essential part of establishing your digital identity and expressing your advocacy mission. Visitors and potential followers get their first impression from your profile.
  • Choose a profile picture that’s easily recognizable and relates to your advocacy. It could be your logo or a photo that represents your cause. Ensure that it’s clear and easily identifiable even in a small thumbnail.
  • Your username, also known as your handle, should ideally be related to your advocacy and easy to remember. If your exact name is taken, consider adding an underscore or a simple modifier to make it unique while still relevant.
  • Your bio is a brief space to explain your cause and what you stand for. Use clear and concise language to convey your mission. Incorporate relevant keywords related to your advocacy in your bio. This can help your profile appear in search results when users look for related topics. You might also include a call-to-action or a link to a website or donation page if applicable.
  • Strategically use emojis to enhance your bio. Emojis can add visual appeal and personality to your profile while conveying emotions and messages succinctly.
  • Instagram allows you to have one clickable link in your bio. If you have a website, blog, donation page, or a specific landing page for your cause, make sure to include it here. You can also use tools that allow you to create link trees to direct users to multiple destinations. If you’re open to inquiries, consider including a contact email or other relevant contact information in your bio.
  • Highlight specific accomplishments, milestones, or awards that you or your advocacy have achieved. These could include successful campaigns, collaborations, events, media coverage, or any other noteworthy achievements.
  • As your advocacy work evolves, make sure to update your bio accordingly. Whether it’s mentioning recent accomplishments, upcoming events, or new partnerships, keeping your bio current ensures that visitors are getting the latest information about your cause.

2. Share Stories

  • Sharing authentic stories – your own or others – is a powerful way to connect with your audience on Instagram and convey the impact of your advocacy.
  • Whenever possible, let the individuals whose stories you’re sharing speak in their own words. This adds authenticity and allows your audience to connect directly with the emotions and experiences of those affected.
  • When sharing others’ stories, ensure that you have obtained proper consent from the individuals involved. Respect their privacy and avoid sharing sensitive or identifying information without permission.
  • Showcase a diverse range of stories and voices. Different perspectives help your audience better understand the breadth and depth of the impact your advocacy cause has on various individuals and communities.
  • Create a comprehensive storytelling experience with both visual and written elements. Use a mix of images, videos, and graphics to complement the narrative in your captions. Visual elements can evoke emotions and help your audience better understand the individuals behind the stories.

3. Optimize Visual Content

  • Optimizing your visual content is essential for grabbing attention and effectively conveying your advocacy message. Visual content is more likely to be shared and remembered, helping you reach a wider audience.
  • Use clear, high-resolution images that are relevant to your cause.
  • Use visuals to evoke emotions that resonate with your cause. Happy, inspiring, or even somber imagery can effectively communicate the mood you want to convey.
  • Overlay impactful quotes, statistics, or brief messages onto images. Quotes can capture the essence of your advocacy and inspire your audience to take action or reflect on their own experiences.
  • Use simple animations to add movement and engagement to your posts. Animated graphics can be a creative way to share information.
  • Complex information and statistics can be more digestible when presented in the form of infographics. Create informative graphics that break down facts, figures, and data related to the condition, treatment options, or advocacy goals.
  • Instagram’s carousel feature allows you to share multiple images or videos in a single post. Use this to showcase various aspects of your advocacy, or present different perspectives.

4. Create a consistent visual identity

  • Maintaining a consistent color palette and visual style on Instagram can significantly enhance your profile’s overall appeal and recognition. Choose a primary color or a small palette of complementary colors. This helps in creating a cohesive and visually appealing feed.
  • Create templates for quotes, statistics, or announcements that incorporate your color palette. You can also use filters that align with your brand’s aesthetics.
  • If you use filters to enhance your images, choose a filter or set of filters that align with your visual identity. Consistently applying these filters gives your profile a polished and harmonious look.
  • Consider the overall aesthetic of your Instagram feed. Plan how your posts will look when they are viewed together on your profile. Plan your grid layout in advance to ensure a visually pleasing arrangement of posts.
  • Design custom covers for your story highlights that follow your color palette and style. This adds a polished and consistent look to your profile.

5. Use Hashtags Strategically

  • Using relevant and strategic hashtags can significantly expand the reach of your advocacy content on Instagram. Use tools like Instagram’s search function, and hashtag generator tools to discover relevant and trending hashtags
  • Include a mix of popular and niche hashtags in your posts. While popular hashtags can expose your content to a larger audience, niche hashtags help you connect with a more targeted and engaged community.
  • If your advocacy efforts are local or tied to a specific event or region, use location-based hashtags to reach individuals in that area.
  • While it’s tempting to use a lot of hashtags, focus on quality over quantity. Include around 5-10 relevant and well-chosen hashtags per post to avoid appearing spammy.
  • Don’t forget to use hashtags in your Instagram Stories. While they’re not as common here, they can still increase the discoverability of your stories.
  • Change your hashtags periodically to avoid being seen as repetitive by Instagram’s algorithms. This can also help you reach new audiences.
  • Regularly review the performance of the hashtags you’re using. See which ones are driving the most engagement and reach. Adjust your hashtag strategy based on this data.

6. Leverage Story Highlights

  • Instagram Story Highlights can be a great resource for patient advocacy. Create separate Story Highlight categories for different aspects of your advocacy. For example, you could have highlights for patient stories, educational resources, events, news updates, and more.
  • If you’re hosting events, campaigns, or awareness drives, use a dedicated Highlight to keep your audience informed about the latest updates, schedules, and details.
  • Highlight the milestones and achievements of your patient advocacy efforts. This can include successful campaigns, partnerships, media coverage, and more.
  • Keep your followers informed about policy changes, research developments, or advancements in medical treatments by creating a highlight dedicated to advocacy updates.
  • Compile a highlight with answers to common questions about the medical condition, treatment options, or lifestyle adjustments. This can help provide quick information to your followers.
  • Choose visually appealing cover images for each Highlight that reflect the content within. This adds a professional touch and makes it easier for users to identify the content they’re looking for.

7. Engage and Interact

  • Social media is a two-way street. Engage with your audience by responding to comments, answering questions, and acknowledging their support. Meaningful interactions help in building a loyal community around your cause.
  • If followers ask questions related to your advocacy, provide detailed and accurate answers. This establishes you as a reliable source of information and builds trust.
  • Whenever someone shows support or provides feedback, acknowledge it with gratitude. This can be as simple as liking their comment or responding with a heartfelt thank you.
  • Mention and tag individuals or organizations that are relevant to your posts. This can broaden your reach and potentially lead to collaborations.
  • Pose open-ended questions in your captions or stories to encourage your followers to share their thoughts and experiences. This initiates conversations and invites them to contribute to the dialogue.
  • Periodically host Instagram Live sessions or Q&A sessions in your Stories. This gives your audience an opportunity to ask questions in real time and engage directly with you.
  • Create an environment where people feel comfortable sharing their stories and opinions. This safe space encourages more meaningful discussions.

8. Collaborate and Amplify

  • Collaborations with other advocates, influencers, and organizations can greatly expand your reach. Collaborations can range from joint social media campaigns, co-hosted events, and Instagram takeovers to shared resources and materials.
  • Look for advocates, influencers, and organizations that align with your advocacy mission. Ensure that the collaboration makes sense in the context of your advocacy. The partnership should enhance the message you’re trying to convey.
  • Collaborations should be mutually beneficial. Clearly communicate what each party stands to gain and how the partnership will help advance the cause
  • Initiate conversations with potential collaborators. Engage with their content, leave thoughtful comments, and establish a genuine rapport before proposing a collaboration.

9. Include Calls to Action

  • A clear and compelling call to action (CTA) is an important aspect of turning your Instagram advocacy efforts into real-world impact. Clearly state what you want your followers to do. Use strong action verbs that motivate them to take immediate steps.
  • Guide your followers on how to take the action. If it’s signing a petition, provide the link. If it’s attending an event, share the date, time, and location.
  • Keep your CTA succinct. A short and impactful statement is more likely to grab attention and be remembered.
  • Tie your CTA to the content of your post. For example, if you’re sharing a personal story, your CTA could be to engage in a discussion or share their own experiences.
  • Make your CTA relatable and personal. Explain how each follower’s action can make a difference and contribute to the advocacy’s success
  • Make your CTA visually stand out. Use contrasting colors, bold fonts, or stickers to draw attention to the call to action.
  • Place your CTA at the end of your caption or post, making it the last thing your followers read. This increases the likelihood of them taking action.
  • Experiment with different types of CTAs to see which ones resonate the most with your audience. You can rotate between calls to sign up, donate, share, attend, and engage.

10. Measure and Adapt

  • Measuring and adapting based on data is crucial for refining your Instagram advocacy strategy. If you haven’t already, switch to a business or creator account on Instagram. This provides you with access to Instagram Insights, a powerful tool for analyzing your profile’s performance.
  • Review which posts are getting the most likes, comments, and shares. Identify patterns in the type of content that resonates with your audience.
  • Look at metrics like likes, comments, shares, and saves. These metrics reflect how your audience is interacting with your content and can guide your content creation strategy.
  • Analyze your Stories’ engagement metrics such as taps forward, taps back, and exits. Stories offer real-time engagement and valuable insights.
  • Identify the times when your audience is most active. Schedule your posts during these peak periods to maximize visibility and engagement.
  • If you have a website link in your bio, track the clicks to see how effective it is in driving traffic to your external resources.
  • Keep an eye on your follower growth rate. If certain types of content or campaigns lead to spikes in follower count, consider replicating those strategies.
  • Insights aren’t static. Regularly review your performance metrics and make adjustments based on the changing dynamics of your audience and the platform.

Mastering the art of Instagram for patient advocacy requires a balance of compelling storytelling, strategic content creation, and meaningful engagement. By creating a strong online presence, patient advocates can amplify their messages, raise awareness, and drive change in healthcare. The key to success is consistency. With dedication and a well-executed strategy, Instagram can become a powerful tool in your patient advocacy arsenal.

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

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. 

Patient-Centric Care

Tailoring Information to Meet the Changing Needs of Patients Along Their Healthcare Journey

Being diagnosed with cancer can be a frightening experience. The diagnosis can bring up a range of emotions such as fear, shock, anger, and sadness. When I was diagnosed with breast cancer, I was initially overwhelmed by the flood of information that came my way. It seemed like there was so much to learn about the disease, its treatment options, and the potential outcomes. I found that trying to process all this information while dealing with the emotional impact of the diagnosis was incredibly challenging. It was difficult to know where to start or how to make sense of it all.

When making decisions about cancer treatment, it’s important to take your time, get organized, and be informed. Breast surgeon, Dr. Deanna Attai of the David Geffen School of Medicine at the University of California Los Angeles recommends that patients approach their appointments with a clear plan and bring along a trusted friend or family member if possible.

Having someone you trust with you during appointments can help provide support, ask questions, and take notes on important information that you may not remember later. But if you’re unable to bring someone with you, Dr. Attai suggests requesting a recording of the consultation so that you can review it later and focus solely on listening during the appointment.

Sorting through information and making treatment decisions can be overwhelming. It’s important to take the time to do research and ask questions of your healthcare team. Don’t be afraid to ask for clarification or more information if needed. The more informed you are about your options, the better equipped you will be to make the best decision for you.

It’s also helpful to stay organized and keep track of all the information you receive. This can be done by taking notes during appointments, keeping a binder or folder with important documents and test results, and creating a list of questions to bring to your appointments. By staying organized and informed, you can feel more in control of your healthcare journey and make decisions with confidence.

Changing Information Needs

As my own cancer journey progressed, my information needs changed. Initially, I focused on understanding my diagnosis and treatment options. During treatment, however, I became more interested in coping with side effects and managing the emotional toll of a cancer diagnosis.  It was at this point that I discovered that the information provided by healthcare professionals didn’t always keep pace with my changing needs. This is when I turn to the internet to seek out more information.

While there is a wealth of health information available online, it’s important to approach it with a critical eye. Not all sources are trustworthy or accurate. That’s why it’s crucial to learn how to evaluate the information you find online. This previous article How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News has many helpful tips and resources to guide you.

It’s important to remember that not all information is relevant to every patient, and what works for one person may not work for another. That’s why it’s essential to discuss what you find online with your healthcare team and ask them to help you put the information into context for your particular situation. They can help you sort through the information and determine which sources are credible and relevant to your needs.

Information Is Power

As a patient, I know that information is power. Feeling empowered and informed throughout my healthcare journey has been crucial in helping me make the best decisions for my health in line with my own personal values and needs.  For example, when I was diagnosed with breast cancer, the information that was provided to me wasn’t tailored to my needs as a young woman with breast cancer. The information was aimed at a much older patient demographic and didn’t reflect the impact that breast cancer would have on me as a young woman living with the disease. It’s crucial that healthcare providers take the time to understand the unique needs of their patients and provide tailored information that helps them make informed decisions about their healthcare. Research has shown that when healthcare providers provide the right information at the right time, it increases the patient’s ability to have a more active role in decision-making.

Information and Shared Decision Making

Information plays a critical role in shared decision-making (SDM). In shared decision-making, patients and healthcare providers work together to make healthcare decisions. In order to achieve this, patients need to have access to relevant, accurate, and understandable information about their healthcare options. Providing patients with this information in a non-judgmental, unbiased, and clear manner is the responsibility of healthcare providers. It is important to provide information on the potential benefits and risks of various treatment options, the likelihood of success, and any possible side effects of medications or procedures. SDM should also consider the patient’s personal circumstances, preferences, and values.

It is the responsibility of healthcare providers to ensure that patients understand the information they receive. This may involve using visual aids, providing written materials, or using plain language to explain complex medical concepts. It is also important to give patients the opportunity to ask questions and clarify any misunderstandings they may have.

One of the key benefits of providing information in shared decision-making is that it empowers patients to take an active role in their healthcare. When patients are informed and engaged, they are better able to make decisions that align with their personal goals and preferences. Research studies have shown that patients are more satisfied with their care when they are more engaged and involved in decision-making. Furthermore, patients who are actively involved in decision-making experience less decisional conflict. Decisional conflict refers to feelings of anxiety, uncertainty, and doubt that patients may experience when making a healthcare decision. Including patients in decision-making can reduce negative emotions and improve patients’ overall well-being.

Conclusion

It has been many years since I received my diagnosis of breast cancer and as I reflect back on the journey I have taken to becoming a patient advocate, I can see how the sources of information I received helped me progress along the way.

In the beginning, I relied on information from my doctors, followed by my own research on the Internet, and then finally connecting with fellow patients online. I gained confidence as I learned more about my disease and treatments, and now I try to help people who are going through a similar thing.

As patient advocates,  I firmly believe that it is our responsibility to ensure that all patients receive information that is timely, accurate, and easy to understand, to help them make informed decisions. We, as cancer patients, have accumulated a wealth of valuable information and knowledge through our personal experiences, and it’s crucial that we share this knowledge generously with those who are now starting their own patient journeys.

How To Participate in Cause Awareness Days: A Step-by-Step Guide For Patient Advocates

Taking part in cause awareness days can be a great way to get your message out. Cause awareness days are specific days (or weeks/months) dedicated to raising awareness and educating the public about a particular cause. People and organizations get to join together, use their collective voices, and make a difference.

In this step-by-step guide, I’ll show you how to participate in cause awareness days more effectively to make a meaningful impact on behalf of your community.

Step 1: Identify relevant cause awareness days

Research and make a list of cause awareness days related to your disease or condition. This information can be found online and through patient advocacy groups. Several websites provide calendars of awareness days, such as the National Health Observances calendar maintained by the US Department of Health and Human Services and PEN’s Cancer Awareness Calendar 2023.

Tip: Don’t limit yourself to disease-specific awareness days. There are many ways to expand your advocacy efforts and engage a wider audience, for example, during days such as World Mental Health Day, International Women’s Day, and World Sleep Day.

Step 2: Plan your strategy

Decide how you will participate in each cause awareness day. Think about different ways you can make an impact, such as sharing educational resources, personal stories, or statistics, hosting fundraising events, speaking engagements, and conducting community outreach. Create a calendar to track your activities and stay organized.

Step 3: Create your content

Make your content engaging by following these tips:

  • Use graphics, videos, or infographics to make your content more visually appealing and engaging. Be sure to use high-quality images and videos that are relevant to your cause. 
  • Keep it concise. Attention spans are short, so keep your content short and to the point. Use bullet points and headers to break up text and make it easier to read.
  • Be sure to fact-check your content and cite credible sources. Misinformation can damage your credibility and harm your cause.
  • Tell a story. Stories are powerful tools for creating emotional connections with your audience. Share personal stories or anecdotes that help illustrate the impact of your cause.
  • Provide actionable steps. Your content should inspire your audience to take action. Provide actionable next steps to get involved or support your cause.

Step 4: Spread the word

A crucial part of raising awareness is spreading the word. To share your content effectively, follow these tips:

  • Share your content on your social media channels, and use hashtags to increase visibility. 
  • Email is still an effective way to communicate with your audience. If you have a list of email subscribers, share your content with them and encourage them to share it with their networks.
  • Collaborate with other patient advocates, organizations, or influencers who are participating in the cause awareness day. This can help amplify your activities and increase the reach of your message.
  • Reach out to local media outlets to share your story. Pitch a story to a reporter or submit a press release to local news outlets.
  • If you have a budget, consider using paid advertising to reach a more targeted audience. 

Step 5: Participate on the day

On the day participate in the activities you have planned. Don’t forget to use relevant hashtags and tag other organizations or individuals who are also participating. Be sure to respond to comments, messages, and mentions on social media. This can help build relationships and trust with your audience. 

Step 6: Follow up

This final step is often overlooked. However, to my mind, it’s one of the most valuable aspects of participating in cause awareness days. This is because it helps to build a community of advocates who are passionate about the cause and can support each other in their efforts.

Here are some ideas to follow up and build on the momentum of the day:

  • Send a message to those who participated in your activities and thank them for their support. Let them know how much their support means to you and to the cause.
  • Share the number of people you have reached with your online activities, your engagement rate, and other relevant metrics to demonstrate the impact of your combined efforts. 
  • Stay connected with those who participated in your activities and build relationships with them. Follow up with them throughout the year and invite them to participate in future activities.

Participating in cause awareness days is a powerful way for patient advocates to bring attention to critical issues that affect their communities, inspire change, and motivate others to join them. Yes, it takes planning and time, but the effort you put in is worthwhile when it contributes to the creation of a movement of passionate advocates that are committed to the same cause.

Patient Advocacy: How To Boost Your Visibility on LinkedIn

In my previous post, I shared with you tips to optimize your LinkedIn profile.  Recall that I recommended LinkedIn as the best social network for enhancing your professional online presence and showcasing your advocacy activities.

If you have put into practice the tips from last month, you should now have a professional-looking profile. So let’s discuss ways you can make your profile more visible on the site.

In essence, you must appear more frequently on LinkedIn, share engaging content, and engage consistently to increase your visibility.

The following are my top recommendations for increasing your activity and visibility on the platform through a daily engagement routine.

1. Share a Daily Status Update

Keep active and visible by posting a status update daily and engaging with your connections’ posts and articles in your newsfeed. LinkedIn encourages users to use specific hashtags in their posts and searches. It’s important to find hashtags relevant to your followers’ interests before you start adding them to your LinkedIn posts. It’s a good idea to observe what hashtags others in your advocacy area use on LinkedIn, as well as on other social media platforms such as Twitter and Instagram.

2. Share A Video

With LinkedIn native video, you can record a video inside the app or upload a pre-made video from your camera roll. This feature is available only on mobile, so download or update the app to make sure you have the latest version.

Tip: Go Live. In the short-term, native video on LinkedIn is still a novelty and presents an opportunity for you to stand out. With live video, you can broadcast content directly to your profile, so you can interact with your audience in real-time, drive deeper engagement, and establish your thought leadership. You will need to switch on Creator mode to be able to record live video. Here’s how to do this

3. Mention People in Your Posts

Mentioning a connection encourages engagement with your posts and comments. To mention someone in a post: Type “@” and then begin typing a name in the box.

4. Engage With Comments

Pay attention to everyone who takes the time to leave a comment on something that you post. Each time someone likes or comments on your post, their network can see it, thereby increasing the visibility of your post. When people are liking, sharing, and commenting on your posts, this acts as “social proof” to your network and beyond.

5. Nurture Relationships

Nurture your LinkedIn relationships through regular engagement. LinkedIn will notify you of trigger events (such as when one of your connections starts a new job). Take a moment to reach out to them with a personalized message of support.

6. Participate In LinkedIn Groups

Join groups on LinkedIn and start a conversation or comment on what is posted there. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.

7. What You Share Matters

What you post on LinkedIn will establish you as a credible authority in your field. The key is to share relevant news, articles, and insights with your connections. Consider the type of content that will be most useful to your followers. As a thought leader, your goal is to consistently share your unique perspective on the most important industry topics.

8. Post Content At Optimal Times

Finally, be strategic about when you post. As a general rule, LinkedIn users are most active right before and after work (7-8 am and 5-6 pm), as well as during lunchtime. Experiment for yourself. Post at different times and take note of which times your particular audience is most engaged with you.

Top Ten Writing Tips and Techniques For Patient Advocates

Patient advocacy involves sharing your unique knowledge and experience with a disease or condition with the ultimate aim of raising awareness and influencing people to effect the desired change.

As patient advocates, we need a variety of tools in our advocacy toolbox in order to effectively advocate for our cause. One of the most important tools is the ability to write compellingly for a variety of audiences and formats.

Whatever audience you’re writing for, there are some basic “rules” to follow. Incorporating these into your writing will help you become a better and more persuasive writer.

1.Use Plain English

Using plain everyday words and avoiding jargon as much as possible is the first rule of good writing.  For example, instead of “commence”, write “start”; instead of “in the event that”, use “if”. To quote the great writer Mark Twain “don’t let fluff and flowers and verbosity creep in.”

Medicine is full of abbreviations, scientific jargon, and medical terminology that not all readers will understand. People read at various levels. Knowing and understanding the audience for whom you are writing is crucial when creating content. Most people overestimate their readers’ knowledge. When writing, consider your intended audience’s level of medical knowledge.

2. Write in a conversational tone

Write as if you were speaking directly to the reader. Using pronouns like “we” and “you” fosters a sense of relatability and trust. The idea is to engage the reader and personal language does just that. It’s important to create a consistent tone of voice in your content, and at the same time, choose the tone that suits your audience.

3. Write short sentences and paragraphs

To separate sections of information, use headings and paragraph breaks. follow the one-idea-per-sentence rule. Presenting information in short, manageable chunks helps you keep the reader’s attention.

4. Avoid using the passive voice

One of the tell-tale signs of scientific writing is the use of passive sentences. To make sentences more direct, use the present and active tenses instead. The term “active voice” refers to a sentence that has a subject that acts on its verb. The passive voice indicates that a subject is the object of a verb’s action.

Active Voice: ”the nurse can vaccinate your child”

Passive Voice: “your child can be vaccinated by the nurse”

Take note of how the sentence in “active voice” is shorter than the sentence in “passive voice.” Passive voice sentences usually require more words, such as “was” or “are.”

5. Cut out the deadweight

If you want your sentences to be shorter, remove unnecessary words (‘very’ is a classic offender). To help you avoid overused cliches and phrases you could try a tool like ClicheFinder.net. This simple tool finds and highlights words, expressions, and phrases in your sentences that are trite, stale, or overused to help you improve your writing.

6. Use the rule of three

In the sentence above, you’ll notice that I used the  “rule of three” (“trite, stale, overused”).  This “rule” is based on the idea that reading about things that come in threes is inherently satisfying. Consider the impact of phrases like “faith, hope, and charity” or “mind, body, spirit.” Using the rule of three in your writing helps the reader remember your points.

7. Craft compelling headlines

Consider how many headlines you read every day while searching the web or scrolling through social media. What makes you want to read an article or a blog post? It’s frequently the headline. Your headline is likely to be the first (and possibly only) impression you make on a potential reader so it pays to take time over crafting a compelling title. There is no hard and fast rule for how long your title should be, but try not to make it any longer than necessary. Aim for 6–10 words or 50–60 characters as a rough guideline.

The next time you write a headline, you might consider trying the following tips.

  • Personalize your title by adding a “You” or “Yours.” This makes your headline more effective since it speaks to your readers’ concerns and sounds more conversational.
  • Avoid the passive voice in your titles. Use strong action-oriented words and instead.
  • By nature we are curious beings, so try to leverage that curiosity in your titles.

8. Hook readers with your opening paragraph

You’ve piqued a reader’s interest with the headline; now you have the chance to pique their interest even further with the first paragraph. Make sure your opening sentence grabs the reader’s attention right away. Telling a story, sharing an eye-catching statistic, or using a memorable quote are all effective ways to accomplish this.

9. Share personal stories

As I mentioned above one of the most effective ways to capture attention is by sharing a story.  Writing is more than just disseminating information. It should also make people feel something. Your brain reacts differently to a story than it does to any other type of information, including straight facts and data. While facts and figures engage only a small portion of the brain, stories engage multiple brain regions that combine to create rich emotional responses.

Storytelling is one of the most powerful ways to breathe life into your writing. To quote a  North American Indian proverb “Tell me a fact and I’ll learn. Tell me a truth and I’ll believe. But tell me a story and it will live in my heart forever.”

10. Proofread before publishing

You should always proofread your work before publishing it. Choose a quiet, distraction-free place to do so. Turn off your phone, television, and radio so you can focus fully on the task at hand.

It helps if you print out your document. You’ll always notice more errors on a printed copy of your work. Using a blank sheet of paper to cover up the lines below the one you’re reading keeps you from skipping ahead of possible mistakes.

Another helpful suggestion is to read it aloud. When you read aloud, your ear may pick up on errors that your eyes may have missed. It’s especially useful for identifying run-on sentences and identifying those that don’t flow or make sense.

Aside from obvious spelling  mistakes, check for the following:

  • Have you used correct punctuation? Poor punctuation really undermines your professionalism. Pay particular attention to misplaced (or missing) commas and apostrophes. One of the most common mistakes is confusing “its” and “it’s.”
  • Are there any long sentences you can shorten?
  • Are you using the passive voice in your sentences? If so change to an active voice.
  • Do your paragraphs flow logically with smooth transitions between each paragraph and from one idea to the next.
  • Are there any sentences that are repetitious? Or are there any parts of the piece that need more context?
  • Have you referenced your quotes and facts correctly? If you are presenting facts in your content, be sure the sources are reliable. Check and re-check the source of quotes and statistics.
  • When publishing your writing online, such as on a blog, ensure that all links to external sites are functional and that the post is properly formatted. If you have a WordPress blog, I highly recommend installing the Yoast SEO plugin, which evaluates your post’s readability, flags passive sentences, and reminds you to use relevant keywords to improve web searchability.

Ideally, you should let your writing rest for a day to gain a new perspective on it. Better yet, have someone you trust proofread the text for you. You may be surprised at how many mistakes you missed.

Finally, one last point. End with a strong call to action. After reading your piece, what is one thing you want readers to remember or take action on? In your conclusion, motivate and empower your readers to put the information you have provided into practice.

Writing is a skill that improves with practice. I hope you find these tips helpful and encouraging as you work on improving the important skill of writing to persuade and inspire your audience.

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

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!

What Is One Thing (Or More) You’d Like to Say to a Newly Diagnosed Breast Cancer Patient?

As we enter the final days of Breast Cancer Awareness Month, I am remembering a time over a decade ago, when immersed in a sea of pink ribbons I felt part of something. I had been diagnosed with breast cancer as the month of September turned into October and surrounded by Breast Cancer Awareness Month activities I felt supported as a newly diagnosed patient.

But as the last days of October faded and the pink ribbon wearers began to disappear, I was left wearing the everyday reality of a disease that I still felt ill-equipped to bear. I still feel a sense of sadness today at all that I had yet to learn and go through on my journey with breast cancer.  I often wonder how much easier that path might have been had I known then what I know now.

One thing I know for sure is that those of us who have traveled this road can ease the way for others who are just starting out. In this spirit, I reached out to the breast cancer community to ask them what advice they would give to a newly diagnosed person with breast cancer.  You will find their responses below alongside some of my own.

Find Support

Cancer research advocate and 20+ year breast cancer survivor, Lisa DeFerrari [1] emphasizes the important role of support. “Don’t be afraid to reach out for support early on,” she advises. “I realize that many of us are very independent-minded – I certainly am,” she says, “but breast cancer and learning how to deal with it are complicated and there are lots of great resources out there. Reaching out for information and support can also be a way to recover from the sense of loss of control that often comes with a cancer diagnosis.”

To this cancer blogger, Megan-Claire Chase [2] adds, “let go of your pride. Don’t be afraid to start a GoFundMe. You’d be amazed by people’s generosity to pay your medical bills and regular bills.”

Ask Questions

“Ask questions and push for information,” recommends Julia [3] creator of #BCCWW breast cancer Twitter chat. “For people living with long term conditions and disabilities before breast cancer it is valid to worry about the consequences of cancer and the risks of treatment on your wider health,” she adds.  “Don’t let anyone invalidate those concerns with ‘but cancer’  – it’s your body and health,  it’s you that has to bear the possible risks and potential consequences of both.   So make sure they’re centered to the degree you need them to be.”

Diagnosed with late-stage invasive lobular breast cancer in 2015, Siobhan Freeney [4] who campaigns for essential breast screening and early detection of breast cancer for women with dense breasts, urges women to ask about their breast density even after a diagnosis, as this is important information because It will influence their surveillance imaging. Siobhan highlights the fact that “many women diagnosed with breast cancer don’t know anything about dense breasts and associated risk factors.

Be Your Own Advocate

Although you may be reeling from the news of a cancer diagnosis, it’s important that you learn as much as you can about your diagnosis and what treatment options are available.  Siobhan advises taking time to absorb what’s just happened and then take notes at meetings and consultations. “Find out as much as you can about your particular cancer and speak up,” she recommends. “Ask for MRI, PET, CT any baseline scans available to you. Find reliable, evidence-based information.”

Jo Taylor [5] founder of After Breast Cancer Diagnosis stresses the need to be your own advocate. “Be your own advocate – try to understand what type of breast cancer it is and ask questions and research it. Always ask for copies of scans and details. Then find your community who support you and you can support them.”

Employment Advice

Megan-Claire offers this advice for those who are working full time at the time of diagnosis “Talk with your manager or direct supervisor and work out a plan where you can work from home (if not already due to COVID) and work out a schedule for coverage when your chemo treatment starts.” She also offers two practical tips when undergoing chemotherapy: “I suggest getting your chemo on Fridays so you’ll have the weekend to rest,” and “ask your oncologist for a temporary handicap sign. It helped me immensely due to deep fatigue.”

Tackle Fatigue

As Megan-Claire mentions, fatigue is an issue that cancer patients face. We all know what it’s like to feel tired — physically, mentally, and emotionally, but usually, after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough. You experience persistent, whole-body exhaustion. Even after adequate sleep or rest, you will still feel tired and unable to do the normal, everyday activities you did before with ease. A lot of cancer patients don’t report fatigue to their doctors because they think that nothing can be done about it. In fact, there are things that can be done to alleviate the debilitating effects of cancer-related fatigue. If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you [6].

Journal Your Thoughts

It is amazing how quickly you forget what you thought and felt in those early days of diagnosis and treatment. Megan-Claire recommends keeping a journal to note down your thoughts. “It could just be a sentence or two and either save them on your laptop or in a journal,” she recommends. “There was a lot I forgot about and was glad I had my little notes from the start of treatment to look back on.”

Honor Your Grief

One of the things you might like to journal about is the feelings of loss and grief you will experience with a cancer diagnosis. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies. Coping with the losses associated with cancer is challenging. Grief brings many emotions with it. Patients, as well as caregivers and family members, may go through emotions of anger, denial, and sadness [7].

Respect the diagnosis; question the prognosis

This final piece of advice comes from Betsy Mullen [8]. “Respect the diagnosis; question the prognosis,” she says. “I was diagnosed with a grade III triple-negative breast cancer and given 2-3 years to live at best. That was 29 years ago.”

To Wrap Up

Being diagnosed with cancer is a life-changing event. Know that you will go through many emotions and experiences on the roller-coaster ride of diagnosis, treatment and beyond.  Each person will experience the journey in their own way.  While there’s no right or way to go through the experience, it’s important as mentioned above that you find support. Reach out at each step of the way and find someone who understands what you are going through and can offer you the support you need.


Notes

[1] Lisa DeFerrari Finding Great Support After a Cancer Diagnosis

[2] Megan-Claire Chase Life On The Cancer Train

[3] BCCWW https://twitter.com/bccww

[4] Siobhan Freeney https://beingdense.com

[5] Jo Taylor abcdiagnosis.co.uk

[6] How To Cope With Cancer-Related Fatigue

[7] Grief, Loss, and the Cancer Experience

[8] Betsy Mullen https://twitter.com/betsymullen

Ten Things You Should Never Say To A Person With Cancer…And One Thing You Should

I get it. People so often just don’t know what to say to someone with cancer.

It’s a shock when someone you care about has received a life-changing diagnosis. Our natural instinct at times of trouble is to rush in with well-meaning phrases and encouraging thoughts.

It may feel to the person saying these things that they are being supportive, but it’s all too easy to say the wrong thing.

So what should you avoid saying to a cancer patient? The following list includes some of the most common things that we in the cancer community have heard from well-wishers. At the end of the list I share the one thing I would have most liked to have heard instead.

1. You’ll beat this

Probably the top-most thing that people say when they want to be supportive is that you’re strong and will beat cancer. While we all hope for the best outcome, we cannot actually be sure of the outcome of the disease for anyone. As breast cancer blogger Nancy Stordahl writes in What Does Beating Cancer Mean Anyway? [1] ”Struggling to live up to some gold standard of what beating cancer means, adds to the already exhausting burden. We need to stop patronizing and judging cancer patients based on misguided battle talk analogies. Cancer isn’t an opponent in some war game you can stomp out by mindset or determination.”

2. You’re so brave

An extension of “you’ll beat this.” This can come across as quite patronizing – especially when it’s followed by a statement like “I couldn’t do it.” The truth is we don’t feel particularly brave, we just don’t have a choice. We do what we have to do to get through treatment the best we can. By promoting belief in bravery and stoicism in the face of cancer, society creates unfair expectations of cancer patients and deprives us of an outlet for our darker fears.

3. My aunt had the same cancer and she was cured

While I’m happy your aunt recovered from cancer, no two cancers are alike. Cancer is a complicated disease and chances are her cancer is not the same as mine. An alternative version of this statement concerns an aunt who died from the “same cancer”. Please don’t go there with us.

4. What’s your prognosis? What are your odds of surviving?

Never, ever ask anyone this question. It is highly personal, intrusive, and insensitive. Enough said.

5. Have you tried [insert latest miracle supplement or diet]. I hear it can cure cancer.

There’s no shortage of advice urging cancer patients to eat a particular food, juice religiously, or try a miracle supplement, however, there’s no scientific evidence that these work and many are downright harmful.

6. The stress of [your divorce, bereavement, job loss] probably caused your cancer.

This is a variation of the “you’re to blame” for getting cancer brigade. “Did you smoke?” asked of lung cancer patients. “Did you breastfeed?” directed at breast cancer patients. All said with the implication that you should/shouldn’t have done a certain thing and really it’s your own fault for getting cancer. In fact, using a statistical model that measures the proportion of cancer risk, across many tissue types, scientists from the Johns Hopkins Kimmel Cancer Center published a study in 2015 which concluded that two-thirds of the variation in adult cancer risk across tissues can be explained primarily by “bad luck.” In other words, a major contributing factor to cancer is in fact beyond anyone’s control.

7. But you don’t look sick

This sounds almost accusatory. As if to be a card-carrying cancer patient you must look the part of a cancer “sufferer”. As cancer patients, we have good days and bad days. On the good days, we look just fine. Other days not so much. How we look is not a reflection of what we are going through.

8. It’s only hair, it will grow back

On the flip side of #7, there are those comments you receive when you do show signs of being a cancer patient. When you lose your hair after starting chemotherapy, you may find your distress dismissed with “it’s only hair, it will grow back” or “lucky you have a nice shaped-head – you can carry off the bald look”.

9. Look on the bright side, at least you will lose weight without having to diet

The crassness of this statement seems hard to believe – but yes, it has been said to cancer patients. Another variation on the looking on the bright side theme – breast cancer patients quite often have to deal with people saying to them “at least you’ll get a free boob job.”

10. You must stay positive

I’ve saved the best for last. Ok, I admit that I caved in when I was first diagnosed with breast cancer to the pressure to be positive because it reassured the people around me. While I accept that for some people, maintaining a positive attitude is a valid coping mechanism, for myself, and for many others, being asked to always show our sunny side is a denial of the times we are in pain, anxious, and afraid.

So what should you say to someone with cancer?

Sometimes there are no right words to say. Sometimes the best you can do is listen, without judgment, without offering any well-meaning advice.

Author Rachel Naomi Remen says it better than I ever could.

“Perhaps the most important thing we ever give each other is our attention…. A loving silence often has far more power to heal and to connect than the most well-intentioned words.”

Having listened first, you could then say something like the following:

“I can’t begin to understand what you are going through/ I am so sorry you have to go through this. I am here for you. What one thing can I do for you right now?”

Knowing we’ve been heard and understood opens up a space for us to feel freer to ask for what we truly need at this moment.


[1] Nancy’s Point What Does Beating Cancer Mean Anyway?

Patient Advocacy: 7 Ways To Access Medical Journal Articles For Free

Has this ever happened to you? You come across a tweet with a link to a new study in your disease area and you eagerly click on it only to find it leads you to a journal article behind a paywall.   

I’ve lost count of the number of times this has happened to me and the frustration I feel at not being able to access a relevant study without paying an amount I cannot afford. To purchase a single article can cost upwards of $100.  

Over the years I’ve discovered there are some ways to get around this paywall.  Below I’ve outlined 7 tips on gaining access to journal articles. These methods may not always give you access to the full article, but they are certainly worth trying in your search for peer-reviewed literature to better understand your health condition. 

1. Search Google Scholar

Google Scholar provides a simple way to broadly search for journal articles, alongside books from academic publishers.  The site harvests the content of institutional repositories and links them in one record. 

2. Explore online databases

Similar to Google Scholar, there are several online repositories of academic papers free to search online. As I said above, you may not always be able to access the full article, but you will be able to read the study abstract (an abstract is a short summary of the research contained within the study.)  

Core is a search engine and index for aggregated research publications from repositories and journals globally.  

Dimensions is a next-generation linked research information system that makes it easier to find and access the most relevant information. Developed in collaboration with over 100 leading research organizations around the world, it brings together over 128 million publications. Users of the free version can use the Open Access filter to find articles. 

The Directory of Open Access Journals (DOAJ) is a list of nearly 10,000 open access journals and a search service finding peer-reviewed and scholarly journals and articles.  

PubMed, maintained by the US National Library of Medicine, is a free search engine covering the biomedical and life sciences going back as far back as 1951. 

JSTOR gives you access to more than 12 million journal articles in upwards of 75 disciplines, providing full-text searches of more than 2,000 journals, and access to more than 5,000 Open Access books. 

Web of Science covers more than 20,000 carefully selected journals, along with books, conference proceedings, and other sources.  

Science.gov covers the vast territory of United States federal science, including more than 60 databases and 2,200-plus websites.

3. Search for pre-printed publications

OSF Preprints is a platform with openly accessible preprints, or submitted manuscripts that are publically distributed before acceptance and peer-review in a traditional scientific journal. An advantage of publishing preprints is the speeding up of scientific communication and of sharing research results earlier, as it can take a long time between submission of an article till publication. OSF Preprints is developed by the Centre for Open Science (COS), a non-profit organization with the goal of greater openness and reproducible research.

4. Download an app

I have installed an app called Unpaywall as a browser extension on my laptop.  

Unpaywall is an open database of 29,624,840 free scholarly articles. The app harvests content from legal sources including repositories run by universities, governments, and scholarly societies, as well as open (free access) content hosted by publishers themselves. 

Open Access Button is another plugin for Chrome or Firefox that works similarly to Unpaywall. Click on the button while you are viewing a pay-walled journal article and it will search for open access versions.  

5. Ask a university librarian or academic

Did you know that people with access to university databases usually have “free” access to all journal articles, because their university pays for it?  If you know someone who works in a university library or is affiliated with an academic institution, it’s worth asking them if they can help you get access to a paywalled journal. 

6. Ask the author for it

While the publisher owns the article, the author will have a legal version he or she can share. Many authors are happy to share a pdf version of their published article. The author’s academic affiliation will be published alongside the article and sometimes this will include their email address. If not a simple Google search should help you find the author’s email contact.   

Metastatic breast cancer patient, Martha Carlson (@Martha__Carlson) says reaching out in this way can be productive. “I’ve had article PDFs sent to me by reaching out to the author and also through other advocates,” she explained.  

ResearchGate and Academia.edu are both platforms that facilitate making contact with researchers and requesting copies of their articles.  

Note: Do NOT share an article an author has given you anywhere online as this will breach the publisher’s copyright rules. 

7. Rent the article

Finally, some journals allow you to “rent” an article for considerably less than buying it. Ok so this tip isn’t free, but if all else fails, it may be your best option.  

I hope you find these tips helpful. As patients and patient advocates, it is important that we can access the latest evidence-based research to help us advocate for ourselves and others.  

Below you will find a list of websites linked to the sites and tools mentioned in this article. 

Useful Sites

Google Scholar:https://scholar.google.com 

Core: https://core.ac.uk 

Dimensions: https://app.dimensions.ai/discover/publication 

The Directory of Open Access Journals (DOAJ): https://doaj.org 

PubMed: https://pubmed.ncbi.nlm.nih.gov 

Web of Science: https://clarivate.com/webofsciencegroup/solutions/web-of-science 

Science.gov: https://www.science.gov 

OSF Preprints: https://osf.io/preprints 

Centre for Open Science: https://www.cos.io 

Unpaywall: http://unpaywall.org 

Open Access Button:https://openaccessbutton.org 

ResearchGate: https://www.researchgate.net 

Academia.edu: https://www.academia.edu 

These Gift Ideas For Newly Diagnosed Cancer Patients Will Show How Much You Care

Do you have a friend or family member who is newly diagnosed with cancer?

Chances are you’d like to get them a gift to show you’re thinking of them.

While any thoughtful gift will be welcomed, there are some gifts that are particularly helpful at this time.

The gift ideas listed in this post are from my own experience as a cancer patient and other patients’ experiences. Remembering back to the shock and anxiety surrounding the early days of my cancer diagnosis I wouldn’t have been able to say at that time which gift would have been most useful because I simply didn’t know what lay ahead of me. Now from the other side of the cancer shore, I’m much more clued into the type of gift that I would love to have received at that time.

If you’re looking for the perfect gift to help a friend get through cancer treatment find inspiration in the list that follows.  Each of these gifts will be guaranteed to help your friend or family member feel truly cared for because you took the time to think of a gift that is not just thoughtful but useful and practical.

Gifts To Help Get Through Chemotherapy Sessions

I won’t ever forget my first experience of the chemotherapy infusion room – a cold and sterile environment I was ill-prepared for.  Sarah Dow (@he4dgirl) suggests gifting “big thick long soft bedsocks” which she used during her own chemotherapy sessions along with a soft warm fleece blanket.  Although most chemotherapy units supply patients with blankets, there’s nothing quite as nice as snuggling into a blanket lovingly chosen for you, rather than a hospital issue one.

Continuing with the coziness theme, another great gift idea is loungewear. Pick out some soft sweat pants and tops that will be comfortable to wear. If the patient will be in hospital for surgery then pajamas are another perfect gift idea. Consider whether they may face limitations after surgery, for example after my breast surgery I had great difficulty lifting my arms, so I wore button-down pajamas.

Gifts To Help Pass The Time During Chemotherapy

The length of time for chemotherapy sessions can range from an hour to eight or more hours depending on the chemotherapy regimen.  To pass the time Sarah suggests good headphones.  You might also like to consider purchasing a subscription to Spotify or Audible for something to listen to on those headphones.

Creating A Comfort Box

Sarah Connor (@sacosw) suggests creating a “box of comfort” filling it with “tissues, unscented soap and moisturizer, sucky sweets, tissues and something to read.” Or you could buy a tote bag which you can customize and fill with useful items to carry to treatment sessions such as:

  • A reusable water bottle that will keep drinks cool as it’s important to stay hydrated during chemotherapy.
  • A travel toothbrush, toothpaste, and alcohol-free mouthwash to help get rid of the metallic taste chemotherapy.
  • Wet wipes and hand sanitizer.
  • A squishy stress ball.
  • Puzzle and coloring books.
  • A notepad and pen – a gift Nancy Stordahl (@nancyspoint) would love to have received at the time was “a journal or pretty notebook for writing thoughts, making lists, writing reminders.”

Post Chemotherapy Gift Ideas

Chemotherapy does all sorts of not-so-wonderful things to a body.  From sleep disturbance to hair loss, nausea, aching joints and cracked skin, the effects of the treatment linger on.

Here are some gift ideas to bring comfort and ease to the patient.

  • To help your friend sleep, get them a silk eye mask or pillowcase. Add a lavender pillow spray, although be aware that sometimes scent and strong smells can be off-putting for chemo patients (this goes for scented moisturizer too).
  • Organic lip balms to help soothe chapped lips.
  • Foot rollers and mini massagers to ease aches and pains.
  • Paraben-free/sensitive skin toiletries because chemotherapy can make skin more sensitive.
  • Anti-sickness wrist bands to help with nausea.
  • Healthy snack bars, peppermint candy, and herbal teas (peppermint and ginger are good for nausea).
  • Soft hats and pretty scarves (again choose silk scarves as other material may get hot, itchy, and uncomfortable).
  • Chemotherapy can plunge some women into menopause. Julia (@BCCWW) suggests a chargeable, portable fan and chill pillows. Lisa Holtshousen (@LHoltshousen) is still grateful to her teenage sons who gifted her a ‘pearl’ necklace which she kept in the freezer and put on when hot flashes struck, and a box of “20 beautiful fans (the kind where your wrist does all the work) – enough for every spot in the house for quick access.”

More Gift Ideas

If you are really stuck for ideas, gift cards and subscriptions are always welcome. From meal delivery and uber rides to magazine/TV streaming subscriptions and gift cards to purchase books, audio, and games, there are plenty of options to choose from.

Gifts That Can’t Be Wrapped

Not all gifts can be wrapped up with a pretty bow but they are no less appreciated and often the most remembered.  Sarah Connor recalls such a gift: “One of my neighbors came round once a week, took a load of washing, brought it back clean and folded. I had two small children. That made such a difference. But it’s not something you could wrap up!”

Offer to walk the dog, carpool kids to school, do grocery shopping, drop off some meals. “Cooking is a chore,” says Nancy, especially when the patient is fatigued from treatment. “A warm (or cold) food item is so appreciated by the entire family.”

Give the Gift of Kindness

Finally, don’t underestimate the simple gift of kindness. Cancer can be a lonely and isolating time. A card or note to let your loved one know you are thinking of them can go a long way to helping a person feel less alone.

To quote Allie Moon (@alliemoonUK) “I think predominantly it’s knowing that someone is there for you, to listen and to be present. Other than that anything that provides a wee bit of comfort or joy is gratefully received.”

What Do You Do When Your Doctor Tells You Not To Google?

What do you do when your doctor tells you not to Google?  A recent Twitter conversation prompted this question, so I set out to answer it with the help of the patient advocate community.

Not surprisingly the first answer I received was firmly focused on the benefits patients found when they turned to the internet.

Why Do Patients Go Online?

Carolyn Thomas (@heartsisters) takes a pragmatic approach to searching for information online. “Personally, I wouldn’t even buy a coffee maker without checking with Google first to learn as much as I could about useful things like reliability, product features or where to get the best value,” she says. “And if my first stop is an online search for relatively minor things like a coffee pot, you can be absolutely sure that I’m going to ask Dr. Google about truly important things like troubling health symptoms.”

Jennifer Douglas (@mmejendouglas) agrees. “ Whenever a new situation comes up in my family or health I immediately take time to search the internet for more information,” she says.

Vanessa Carter (@_faceSA) calls the internet one of her “greatest allies as a patient who survived an antibiotic-resistant infection that nearly obliterated my face.”  She describes how “without information about antibiotic resistance easily accessible to me on the internet in multiple realms including on websites, journal articles and social media, I do not believe I would have survived such an aggressive antibiotic-resistant infection which required me to participate equally in the management of it, both in and out of hospital settings, at home and even when I lay in an intensive care unit wondering whether my body would get through another day of excruciating pain.”

Many patients cite the reason they turn online is to be able to close the information gap that exists when they can’t get the information they need from their healthcare providers.  As Vanessa explains, “when my doctor or alternative care provider like a nurse or pharmacist was not there to answer my wide-ranging questions such as how to manage my surgical wounds better, or how I could play a role towards improving my antibiotic adherence, and why it mattered to my infection, it was Dr. Google that filled that communication gap.”

Having said that, Vanessa also acknowledges “over time that not all the information I found online was constructive.”  Terri Coutee (@6state) agrees.  “The internet and Dr. Google are a highway of potential disaster unless you utilize the proper navigation tools to do a deeper dive into what is often a life-changing decision.”

Vanessa dealt with this by carefully evaluating the information and then “asked a willing doctor in my healthcare team to validate it,” adding, “I was the information seeker, and the doctor was my compass.” A nice way to convey that in general patients don’t see their information searches as a substitute for clinical advice, rather we still value traditional physician-patient consultations as important to our understanding of online health information.

Building Trust Through Information Sharing

Vanessa’s comment leads me to reflect on patients’ internet information seeking as an opportunity to strengthen trust between doctor and patient.

Research bears this out.

When researchers Sharon Swee-Lin Tan and Nadee Goonawarden systematically reviewed existing research on patients’ internet health information seeking and its influence on the patient-physician relationship, they found that it can improve the patient-physician relationship. [1]

According to the researchers, a majority of patients had felt more comfortable with information from health care providers because of their internet searches and felt more confident with the doctor’s advice.  Interestingly, patients who shared online information felt that they received more attention from their physician, compared with non-sharers.

“I think that it is valuable for patients to be affirmed in their desire to better understand their unique diagnosis,” notes Jennifer. “When I brought my research to my doctor’s visits it enabled me to participate more fully in the discussion about my treatment.  In one situation, I met with my radiation oncologist and brought up my research about the possibility of long-term nerve damage after radiation.  She affirmed that it was a remote possibility, but was also able to share that in her professional career, she had never seen a patient have that particular side effect.  I liked that she recognized that this could be a rare side effect, but was willing to share her years of experience with me during the conversation.  I think that a collaborative approach between patients and health care providers can lead to better understanding and perhaps better quality of life for us, the patients.”

Barbara Jacoby (@letlifehappen) is concerned that the “don’t google it” instruction is an arrogant attitude that is deeply entrenched in the medical community. “One of the main reasons for my work is to improve the doctor-patient narrative in order to improve outcomes,” she explains. “And if my doctor says to me that I should not do my own research on Dr. Google, they are saying to me that they know everything and that tells me that I have the wrong doctor.”

Metastatic breast cancer patient, Ilene Kaminsky (@ilenealizah) recalls how her first oncologist “essentially told me to stay off Google. I felt very uncomfortable with her suggestion that she was the de facto source of information on my disease.”

MS patient, Robert Joyce (@A30MinuteLife) is also of the opinion that this attitude “doesn’t reflect well on any medical professional if they are telling us not to get information. It means, to me, they are not sure themselves and are afraid of being caught out. If healthcare providers want us, the patient, to trust them, we need to be an equal partner at the table. This builds trust.”

Ilene wishes health professionals would act as our partners in wellness. “And as our partners, it’s their responsibility to see to it that we have access to information,” she says. “Suggesting that we not do our own research, read the many books (or listen to audiobooks or podcasts) about our disease is not only ridiculously ignorant but also impossible. We’ll do it anyway, we just won’t come to them when we have questions for fear of reprimand. Not the healthiest outcome for either patient or physician.”

Doctors Google Too!

Not all doctors are averse to Dr. Google.

“In general, my experience has been with doctors who suggest checking something on the internet, even to the point my GP has looked it up, in my presence, to show me some information,” says Robert.

Male breast cancer advocate, Rod Ritchie (@malefitness) has this to say, “so tired of hearing don’t Google medical information. Obviously, my doctor is too, today we searched together for side effects that a drug might have.”

Carolyn, on the other hand, wishes her physician HAD gone online when she visited the Emergency Department with heart attack symptoms. “I now wish that the Emergency Department physician who misdiagnosed my cardiac symptoms had bothered to Google before misdiagnosing me and sending me home,” she says, “because I’m pretty sure that had he Googled central chest pain, nausea, sweating and pain down your left arm, Dr. Google would have come up with only one possible search result: myocardial infarction!!”

How Do Patients Wish Their Healthcare Providers Treat Online Information Searches?

As patients have better access to health information through the internet and expect to be more engaged in health decision making, traditional models of the patient-physician relationship need to be adapted to patients’ changing needs by incorporating their perspective into a relationship-centered medical paradigm.

“Suggesting that patients refrain from Googling is completely inappropriate and out of step with the times,” points out Nancy Stordahl (@nancyspoint). “Besides, by the time a patient lands in front of a doctor, she/he has likely already done a fair amount of Googling. Rather than suggesting no Googling, better advice might be to encourage patients to bring concerns, questions, or whatever that they uncover so such issues can be addressed or clarified. If a doctor told me to refrain from Googling, I’d wonder what she didn’t want me to find out. I’d head straight home and you guessed it, start Googling!”

So what can we do to address this disconnect between the fact that patients WILL search online for health information and the reality that by and large patients are discouraged from doing so?

“Physicians must by now realize that their patients are ALREADY online,” declares Carolyn. “Instead of warning them NOT to do what they’ve been doing for years, a more realistic response would be to give each  patient a prescription-style list of credible websites to check if they do need more information.”

There was much agreement on this point.

“The medical profession must accept information is available all around us and we will see it,” Robert explains. “To ensure we see the right content, we must know the right places to look, and it is the healthcare professional who should be responsible for being our guide.”

Metastatic breast cancer patient Abigail Johnston (@amjohnston1315) makes clear that “no one is more motivated to research and learn and look for more treatment options than a patient with a serious or chronic illness.  Rather than attempting to reserve all the knowledge for themselves, doctors and patients would be much better served by fostering a partnership in the best interests of the patient.”

Abigail recounts that “ironically this just happened with me and my doctor yesterday.  I sent her the link to a study, she called me and we talked about how the trial might fit into my lines of treatment.   She’d never heard of the study and added it to her repertoire.  It’s Phase 1 now but may be helpful later.  This is how it works when it works well!”

Conclusion

The patients I talked to were unanimous in the belief that supporting patients in their online information-seeking activities and guiding them to reliable sources of information builds a relationship of trust and empowers patients to take a more active role in their care. To quote Vanessa, “I’m thankful I had doctors who were willing to support me using any tools at my disposal to empower myself, even though they were far from perfect, because we had both almost lost hope, yet here I am, another e-Patient who survived because I had the right support to desperately seek out the answers I needed.”


[1] Tan SS, Goonawardene N Internet Health Information Seeking and the Patient-Physician Relationship: A Systematic Review

J Med Internet Res 2017;19(1):e9

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

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!