Tag Archive for: Marie Ennis-O’Connor

The Price of Passion: Self-Care for the Online Advocate 

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The start of a new year often brings fresh energy and a reinvigorated commitment to creating positive change in the world. For health advocates, this might mean harnessing the power of online platforms to raise awareness, mobilize communities, and drive meaningful change. While the digital landscape offers unparalleled opportunities, it also comes with distinct challenges that can impact our mental and emotional well-being. 

Striking a balance between advocacy and self-care isn’t just important—it’s essential for sustaining this vital work over the long term. By nurturing our own well-being, we ensure we can continue to make a difference while protecting our passion and purpose. 

The Emotional Labor of Advocacy

Patient advocacy is deeply personal. It often involves sharing our own stories or offering support to others navigating similar challenges. While this vulnerability can create meaningful connections, it can also take an emotional toll. The constant exposure to difficult narratives, coupled with the relentless pace of online engagement, can significantly impact our mental and emotional well-being. 

Recognizing Burnout

Burnout can creep in subtly, often showing up as a gradual decline in well-being rather than a sudden crisis. It’s important to pay close attention to warning signs such as: 

  • Emotional Exhaustion: This is a core symptom of burnout, characterized by feeling drained, irritable, and emotionally detached. You may find yourself easily overwhelmed, lacking empathy, and experiencing a general sense of apathy towards your advocacy work. 
  • Decreased Engagement: A significant shift in your advocacy involvement, such as loss of enthusiasm, lack of motivation, and a sense of detachment from your cause. 
  • Cynicism: A growing sense of negativity and criticism towards your own efforts, disillusionment with advocacy progress, and even feelings of hopelessness or despair.  
  • Physical Symptoms: It is also possible to experience burnout physically. Chronic fatigue, sleep problems, headaches, or other physical problems may occur. These physical symptoms can further compound emotional exhaustion and decrease your overall well-being. 

Identifying these signs as early as possible is important for preventing burnout from escalating. Taking proactive steps to address these warning signals can protect your well-being and ensure the sustainability of your advocacy work for the long term. 

Online Advocacy and Self-Care: Practical Strategies

Let’s explore some effective strategies for navigating the online world while maintaining your mental health.

1. Set Boundaries

Creating a healthy online presence begins with establishing strong boundaries. Here are some practical strategies to support this: 

1.1. Implement Time Blocking

Time blocking is a powerful time management technique that helps you allocate your time more effectively and avoid digital overwhelm. 

    • Choose a consistent time for planning, such as the end of your workday or the start of your morning. 
    • Identify your top priorities for the upcoming work session. 
    • Estimate the duration of each task and include a 25% buffer for unexpected delays. 
    • Schedule tasks into your calendar, ensuring you have clear focus periods. 
    • At the end of the day, review your progress to adjust and improve your future planning. 

1.2 Create “Tech-Free” Zones

Designate specific areas in your home, such as the bedroom or dining table, as technology-free zones. This simple step encourages a healthier balance between online and offline life, helping you recharge and stay present in the moment.

1.3. Use Website Blockers

Tools, such as Cold Turkey1, Freedom2 and StayFocusd3 restrict access to distracting sites during designated work periods. These tools help you maintain focused attention on your tasks by removing the temptation to engage in non-productive online activities. By creating a distraction-free digital environment, you can stay on track and accomplish your goals more efficiently.

2. Leverage Online Tools and Resources

2.1 Social Media Management Tools

Schedule posts in advance, analyze engagement metrics, and track mentions of your cause or keywords with tools like Buffer.4 This not only saves you time and effort but can also provide valuable insight into how people are engaging with your content.

2.2 Mental Health Apps

There’s a wide variety of mental well-being and stress management apps available to support your mental health. These apps offer a range of features, such as guided meditation, mindfulness exercises, breathing techniques, and relaxation practices. Regular use of these tools can improve focus, reduce stress, and help you cultivate a sense of calm, making them valuable companions for maintaining emotional balance in a busy digital world.

3. Curate Your Feeds 

Finding a balance between staying informed and protecting your mental health is essential. Curate your online feeds to minimize exposure to negativity by unfollowing or muting accounts that consistently trigger feelings of anxiety, anger, or hopelessness. This intentional approach to managing your digital environment can have a positive impact on your overall mood, helping to reduce stress and lower the risk of burnout.

4. Share Your Truth On Your Terms

Authenticity is important in advocacy, but it’s equally important to prioritize your well-being. Remember you have the right to control what you share and when. Avoid oversharing or disclosing information that may make you feel uncomfortable or unsafe. 

5. Cultivate A Supportive Online Community

Advocacy is not a journey meant to be traveled alone. Building a supportive network is important for both personal well-being and professional growth. Such a network becomes a safe haven where you can express frustrations, celebrate wins, and process complex emotions without judgment. Personally, I’ve found immense validation, encouragement, and friendship through connections with fellow advocates. These relationships have not only enriched my journey but have also inspired me to keep moving forward. By working together, we can amplify our collective impact and achieve far greater success in advancing our advocacy goals. 

6. Develop Strong Communication Skills

Strong communication skills are essential for effective online advocacy and vital for maintaining your self-care. By practicing active listening, engaging in respectful and constructive dialogue, using “I” statements, and mastering de-escalation techniques, you can cultivate a more positive and supportive online environment for yourself and others.

7. Know That It’s Okay to Say No

It took me a long time to learn that it’s okay to say no. When I first became a patient advocate, I felt compelled to say yes to every opportunity, believing that doing so was necessary to make a difference. Over time, I realized that declining opportunities that don’t align with my priorities or that overextended my resources is not a failure—it’s an essential act of self-preservation. By setting boundaries, you create space to focus on the initiatives that matter most to you and where your efforts can have the greatest impact. In the long run, honoring your limits enables you to show up more fully for the causes and communities that inspire you.

8. Prioritize Self-Care

Prioritizing self-care isn’t a luxury—it’s a necessity for sustainable advocacy. Actively nurturing your physical, mental, and emotional well-being is essential for maintaining your passion and effectiveness over the long term. 

  • Make Time For Yourself: Schedule regular breaks from screens to give your mind and body a chance to rest and recharge. Disconnect from the constant influx of information and dedicate time to activities that bring you joy and relaxation. 
  • Physical Wellness: Ensure you’re taking care of your body with regular exercise, a balanced diet, and sufficient sleep. Advocacy work can be demanding, and maintaining physical health helps you stay resilient and energized. 
  • Engage in Activities You Love: Invest time in pursuits that bring you fulfillment, whether it’s spending time in nature, connecting with loved ones, diving into a favorite hobby, or enjoying a good book. These activities reduce stress, lift your mood, and provide a much-needed reprieve from the demands of advocacy work. 
  • Celebrate Your Wins: Take time to acknowledge and celebrate your achievements, no matter how small. Recognizing your efforts—even the seemingly minor ones—can boost your confidence, sustain your motivation, and remind you of the impact you’re making. 

Remember, self-care isn’t selfish—it’s an investment in your well-being. By prioritizing yourself, you’re better equipped to show up fully for your advocacy work and the communities you serve. 

From Cancer Diagnosis to Healing: 21 Tips and Resources for Body, Mind, and Spirit

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Last month, I quietly marked a significant milestone—20 years since my breast cancer diagnosis. It’s a strange thing, this “20-year cancerversary”. It feels like a lifetime ago, yet it still feels raw and surprisingly recent. The shock of that day, hearing the words “you have cancer”, and the surreal weeks and months that followed, remain forever etched in my memory.

Looking back, I often think about the things I wish I had known back then—truths and lessons that could have eased the journey or offered comfort in moments of anxiety. That’s why I want to share some of those insights with you if you’re beginning your own cancer journey. I hope these tips will provide guidance, strength, and perhaps a little light to help you navigate the challenges ahead.

1. Become Your Own Best Advocate: Take charge of your healthcare journey. Ask questions, seek second opinions, and clearly communicate your needs and concerns to your medical team. Don’t hesitate to advocate for information that is tailored to your specific situation, age, and lifestyle.

Further Reading: Patient Advocacy: Understanding Your Illness – Patient Empowerment Network

2. Educate Yourself: Learn about your specific cancer type, treatment options, and the latest research. Knowledge is power and can help you make informed decisions. Use trusted sources like your medical team, cancer organizations, and support groups. Understand that the right information, provided at the right time, empowers you to make informed decisions.

Further Reading: How to Read and Understand a Scientific Paper – Patient Empowerment Network

3. Participate in Shared Decision-Making: Shared Decision Making (SDM) means you and your doctor work together to make choices about your healthcare. You’ll learn about the pros and cons of different treatments, how likely they are to work, and what side effects might happen. Don’t be afraid to ask lots of questions until you feel comfortable with the options presented to you.

Search here for articles on SDM.

4. Explore All Treatment Options: Discuss various treatment approaches with your doctor, including standard medical treatments, clinical trials, and complementary therapies like acupuncture or massage alongside your regular medical care.

Search here for articles on clinical trials.

5. Understand Cancer-Related Fatigue (CRF): Cancer-related fatigue is different from the tiredness you feel after a long day. It’s like having your battery completely drained, and no amount of sleep or rest seems to recharge it. This kind of fatigue can be overwhelming and make it difficult to do even simple everyday tasks. It’s important to talk to your doctor if you’re experiencing this, as there may be ways to manage it and improve your energy levels.

Read How To Cope With Cancer-Related Fatigue for more tips and information.

6. Be Aware of “Chemobrain”: Understand that cancer treatment can affect cognitive function. This is often called “chemobrain,” even if you didn’t have chemotherapy. It can feel like a mental fog, making it hard to remember things, focus, or think clearly. This can be frustrating, but it’s important to know that many people experience this. Staying mentally and physically active can help your brain recover. This could include things like puzzles, reading, socializing, and light exercise.

Further Reading: Is Chemobrain Real? Coping With Cancer-Related Cognitive Changes – Patient Empowerment Network

7. Manage Your Energy Bank: Be mindful of your energy levels. Think of your energy as a bank account – balance energy expenditure with rest and relaxation to avoid “overdrawing” your reserves. Prioritize tasks and schedule activities for times when you have more energy. Build in rest breaks throughout the day.

8. Engage in Light Exercise: Even though you may not feel like it, regular light exercise can help reduce fatigue and improve your mood. This doesn’t have to be anything strenuous – a short walk, some gentle stretching, or chair exercises can make a difference. Start small and gradually increase your activity level as you feel able. Listen to your body and don’t push yourself too hard. Even a little bit of movement can go a long way in improving your overall well-being.

Watch: What Role Does Exercise Play in Cancer Treatment? – Patient Empowerment Network

9. Eat a Healthy Diet: Nourish your body with a balanced diet that supports energy levels and avoid processed foods. Choose a variety of fruits, vegetables, whole grains, and lean proteins. Drink plenty of water throughout the day. Dehydration can worsen fatigue and other side effects. If you’re struggling with taste changes or nausea during treatment, consult an oncology dietitian for personalized advice and support. They can offer strategies to manage these side effects and maintain adequate nutrition.

Further Reading: Nourishing Your Body and Mind: Nutritional Advice For Cancer Survivors – Patient Empowerment Network

10. Prioritize Your Well-being: Facing cancer can be incredibly stressful, and it’s easy to get caught up in appointments, treatments, and worries. But taking care of your emotional and mental health is just as important as taking care of your physical health. Engage in activities that bring you peace and relaxation, such as meditation, spending time in nature, or pursuing hobbies. Even a few minutes of quiet reflection can help calm your mind and reduce anxiety. There are lots of apps and online resources to guide you.

11. Build a Support System: Connecting with others can make a huge difference in your emotional well-being and help you cope with the challenges of cancer. Support groups offer a safe space to connect with others who truly understand what you’re going through. If you’re not feeling up to in-person meetings, online forums and communities can be a great way to connect with others from the comfort of your home.

Check out this list of Online Cancer Support Groups and Organizations by Type of Cancer – Patient Empowerment Network

12. Allow Yourself to Feel Your Emotions Fully: It’s perfectly normal to have a rollercoaster of emotions when you’re dealing with cancer. You might feel scared, sad, angry or frustrated. Don’t judge yourself for having “negative” emotions. They are a natural part of the human experience, especially during difficult times. Allowing yourself to feel your emotions fully is an important part of processing what you’re going through.

13. Tune into Your Feelings: Taking time to check in with your emotions can help you understand your feelings with more awareness. Think of it like taking your emotional temperature. Set aside a few minutes each day when you can be still and undisturbed. Take a few deep breaths, inhaling slowly and exhaling fully. This helps to calm your mind and body. Ask yourself “What am I feeling right now?” Don’t overthink it, just notice the first emotion that comes to mind. Name the emotion without judgment. For example, “I’m feeling anxious,” or “I’m feeling sad.” Pay attention to any sensations in your body associated with the emotion. Is your chest tight? Are your shoulders tense? Do you feel a knot in your stomach? Don’t try to change the feeling or push it away. Simply acknowledge it and let it be.

Important Note: If the emotion intensifies or becomes overwhelming, stop the exercise and try again later. You can also seek support from a therapist or counselor if you’re struggling with difficult emotions.

14. Write Down Your Feelings: Sometimes, it’s easier to make sense of your emotions when you put them into words. Journaling can be a powerful tool for processing your experiences and navigating the emotional ups and downs of cancer. Looking back on your journal entries can also help you see how far you’ve come and recognize your own strength and resilience.

Further Reading: The Power of Journaling During Cancer Treatment – Patient Empowerment Network

15. Pay Attention to Grief Triggers: Anniversaries of your surgery, diagnosis, and other cancer-related milestones can reawaken difficult memories and emotions. Be mindful of these dates and plan ahead for ways to cope with potential emotional triggers. This might involve scheduling time for self-care, talking to a loved one, or engaging in a relaxing activity. You might also consider creating a meaningful ritual to acknowledge the anniversary or milestone such as lighting a candle or visiting a special place.

Further Reading: Grief, Loss, and the Cancer Experience – Patient Empowerment Network

16. Accept Anxiety as a Normal Response: Anxiety is a natural response to a challenging situation. It’s like an alarm system that gets triggered when your body perceives a threat. In this case, the threat is the cancer diagnosis and all the unknowns that come with it. When you acknowledge and accept your anxiety, you can start to develop healthy ways to manage it. There are many effective strategies for coping with anxiety, such as relaxation techniques, mindfulness practices, and exercise. However, if you find that your anxiety is overwhelming or interfering with your daily life, reach out for help and support.

Further Reading: Coping With Scanxiety: Practical Tips from Cancer Patients – Patient Empowerment Network

17. Identify Your Body’s Stress Response: Stress can manifest in many ways, and often, our bodies give us clues long before we consciously register feeling stressed. Learning to recognize your unique stress signals can help you manage anxiety and take steps to calm yourself down. For example, when you’re anxious, you might find yourself taking short, shallow breaths, or your heart might pound or feel like it’s skipping beats,  Once you’re aware of your physical stress response, you can take steps to interrupt it. This might involve deep breathing exercises, progressive muscle relaxation, or mindfulness techniques.

18. Acknowledge Emotional Trauma: Cancer is more than just a physical disease; it can be a deeply emotional and psychological experience. It can shake your sense of self, challenge your beliefs about the world, and bring up difficult emotions like fear, vulnerability, and grief. Recognizing the emotional trauma of cancer validates your experience and allows you to give yourself the compassion and care you deserve.

Further Reading: Cancer Trauma: How To Know If You’re At Risk and Key Strategies for Recovery – Patient Empowerment Network

19. Honor Your New Reality: For many of us cancer is a life-altering experience. It can shift your priorities, change your outlook on life, and even redefine who you are. It’s important to acknowledge and honor this new reality, even as you grieve for the life you had before. Even in the face of adversity, there is potential for growth and transformation. Cancer can teach you valuable lessons about resilience, gratitude, and the importance of living each day to the fullest.

Further Reading: Finding Your New Normal: 7 Steps To Navigating Life After Cancer – Patient Empowerment Network

20. Find the Joy: Don’t let cancer overshadow the beauty and goodness in your life. Actively seek out experiences that bring you happiness and fill you with gratitude. Spend time outdoors, breathe in the fresh air, and appreciate the beauty of the natural world. Share laughter, stories, and hugs with the people who matter most to you.

Watch: Meditation on Joy – Patient Empowerment Network

21. Live with Purpose: A cancer diagnosis can be a profound wake-up call, prompting you to re-evaluate your priorities and consider what truly matters in life. This is an opportunity to connect with your deeper values and live each day with intention and purpose. Cancer may strip away the illusion of certainty, but it also illuminates what truly matters. Let this heightened awareness guide you as you rebuild your life, find hope in unexpected places, and honor the resilience you never knew you had. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.

Wishing you strength and healing on your journey.

Giving Cancer Patients a Voice: The Role of Patient-Reported Outcome Measures

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The diagnosis and management of cancer profoundly impact every aspect of a patient’s quality of life. Yet, despite its importance, quality of life (QoL) is not always a focus in cancer research and clinical trials. Perhaps this is due to the difficulty in accurately measuring something so inherently subjective and complex. While existing tools capture different aspects of QoL, no single tool covers every dimension. In addition, traditional clinical trials tend to emphasize physical well-being, underrepresenting psychological and social factors despite their importance for patients’ overall well-being. 

Given the challenges in capturing the full spectrum of QoL, Patient-Reported Outcome Measures (PROMs) provide a solution by allowing patients to share their direct experiences, including the physical, emotional, and social impacts of cancer and its treatment.  

PROMS – Giving Cancer Patients a Voice

Besides providing direct communication between patients and their healthcare providers, PROMs also give patients a higher level of autonomy when it comes to their healthcare. Treatment adjustments can be made based on these insights in order to align with patients’ personal goals, whether it’s prioritizing quality of life over survival or balancing symptom management with treatment efficacy. 

On a broader scale, PROM data can drive systemic improvements by offering concrete evidence of patients’ needs, which can inform policy changes, resource allocation, and advocacy for enhanced cancer support services. 

Challenges and Considerations in Implementing PROMs

There are several challenges and considerations to implementing PROMs in routine cancer care and research. 

Standardization and Validation: It is important to develop validated and standardized PROMs to accurately reflect cancer patients’ experiences. Quality of life is impacted by cancer types and disease stages differently, so disease or stage-specific PROMs are needed. PROM guidelines emphasize the need for comprehensive and robust measures to ensure their validity and reliability across a wide range of patient populations.1 

Complexity of Measurement: Capturing the multifaceted nature of quality of life, which includes physical, emotional, social, and psychological dimensions, requires comprehensive tools. This complexity can make it challenging to develop PROMs that are both thorough and easy for patients to complete. 

Integration into Clinical Practice: Incorporating PROMs into routine clinical workflows can be difficult due to time constraints, the need for training healthcare providers, and ensuring that the data collected is used effectively in patient care. 

Patient Burden: For PROMs to be successful, they must not be excessively burdensome for patients to complete. Long or complex questionnaires can lead to lower response rates and incomplete data. 

Cultural and Linguistic Adaptation: PROMs need to be culturally and linguistically adapted to be relevant and understandable for diverse patient populations.  

How Can Patient Advocates Overcome These Challenges? 

As a patient advocate, you have a unique role in improving cancer care.  You can help ensure that patient voices are heard and that quality of life is prioritized in cancer care. 

Here are some specific actions you can take: 

  • Host Educational Sessions: Organize workshops, webinars, and support groups to educate other patients about PROMs and their importance. Share practical tips on how to complete these measures and discuss their benefits. 
  • Public Speaking: Share your personal story and experiences at conferences, workshops, and community events to highlight the importance of PROMs. 
  • Social Media Advocacy: Use social media platforms to raise awareness about PROMs and their benefits. Share informative posts, patient stories, and advocacy messages. 
  • Create Resources: Develop easy-to-understand materials such as infographics, videos, and online content that explain PROMs and their role in cancer care. 
  • Engage with Healthcare Providers:  Encourage healthcare facilities to implement pilot programs using PROMs and share success stories from institutions that have already benefited from PROM integration.  
  • Policy Advocacy: When engaging with policymakers, present case studies or data showing how PROMs have improved patient outcomes and satisfaction in similar settings. 
  • Collaborate with Researchers: Partner with academic institutions and research organizations to conduct studies using PROM data. This can help identify areas for improvement in cancer care. 
  • Data Sharing: Advocate for the sharing of de-identified PROM data to facilitate broader research and quality improvement initiatives. 

The Future of PROMs in Cancer Care

As the development of more refined and targeted PROMs continues, the future of cancer care looks promising. With advancements in technology, digital health tools will make it easier to collect and analyze PROM data in real time, enabling more dynamic and responsive care.   

A key driver of this technological progress is artificial intelligence (AI). By streamlining data collection through adaptive questionnaires, improving data analysis with predictive algorithms, and enabling real-time patient health monitoring, AI will revolutionize how PROMs are used in healthcare. For instance, AI-powered tools like natural language processing (NLP) can analyze free-text responses, making PROMs more personalized and comprehensive. Predictive analytics will empower healthcare providers to anticipate and address declines in a patient’s quality of life, leading to quicker, more proactive interventions. Furthermore, AI will help reduce bias in interpreting PROM data and ensure that these tools are culturally and linguistically adapted for diverse populations. 

By fully integrating PROMs into standard practice, we can shift towards a more patient-centered approach to cancer treatment—one that values not just survival but also a meaningful quality of life. This patient-centered approach has the power to transform cancer care, ensuring that all aspects of the patient experience are considered, respected, and addressed, making cancer care more holistic and responsive to the needs of each individual.   

The Potential of Generative AI to Power Patient Advocacy

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Previously we looked at how generative AI tools can help patients cope with cancer.  In this article, we’ll discuss how you can leverage this technology to boost the impact of your advocacy. 

Understanding Generative AI

Generative AI is a type of artificial intelligence that learns from a large number of examples to understand how different types of content are made. Once it has learned, it can produce new, original content based on that knowledge. Examples of generative AI include ChatGPT, Google Gemini, and Microsoft Co-Pilot. Beyond text generation, AI can create images, suggest hashtags, and even draft YouTube descriptions or podcast scripts. 

Practical Applications of Generative AI for Patient Advocacy

We can use Generative AI to boost our advocacy in so many ways. Below are some ideas for you to consider.

1. Content Generation

Enhance your advocacy with AI-driven content creation tools. 

  • Idea Generation: Brainstorm topics for articles, blog posts, social media posts, or even scripts for videos and podcasts aligning with your advocacy goals. 
  • Content Drafting: Quickly generate initial drafts or outlines for your content, saving time and providing a starting point for further refinement. 
  • Language Improvement: Improve the readability, clarity, and impact of your writing with suggestions for alternative phrasing and sentence restructuring. Surfer AI Article Outline Generator (surferseo.com) is a free tool to assist with this. 
  • Headline Generation: Create engaging headlines and titles with AI-powered tools like the Free Title Generator by Semrush (www.semrush.com). 
  • Research Assistance: Gather relevant information, statistics, and references to enhance the credibility and persuasiveness of your content. (Note: The AI may cite sources that are inaccurate or do not exist, so it’s essential to verify these.) 

Example: When writing about a new treatment option, AI can brainstorm article ideas, generate an initial draft summarizing key points, and suggest studies to include.

2. Refine and Optimize Your Message

Here are some ways that AI can help you improve the quality and effectiveness of your advocacy content. 

  • Structural Guidance: Get recommendations on how to organize your content for maximum clarity. 
  • Readability: AI can suggest edits to improve readability. The Hemingway App (hemingwayapp.com) and Grammarly (www.grammarly.com) are excellent resources for this task. 
  • Search Engine Optimization: Expand your reach by incorporating AI-generated suggestions for relevant keywords, making your content more discoverable through search engines. 

Example: Use AI to improve the structure, language clarity, and flow of blog posts and articles before publishing them on your website.

3. Content Repurposing

Turn your existing content into new formats and reach new audiences to maximize its value. 

  • Blog to Video: Publish a blog post or article using a video you have already produced, expanding the reach of your content. Using tools like Video to Blog (www.videotoblog.ai) can streamline this process. 
  • Blog to Social Media: Distill key points from your blog posts into eye-catching social media snippets, infographics, or short videos. Lumen5 (www.lumen5.com) can transform your blog posts into engaging short videos, automatically extracting key points and pairing them with relevant visuals and music 
  • Podcast to Articles: Repurpose podcast episodes into written articles or summaries to expand your content’s lifespan. Try a tool like Podium (www.hello.podium.page) that transcribes your podcast and helps you turn the transcript into engaging articles. 
  • Long-form to Short-form Content: Extract highlights, quotes, or statistics from longer pieces and turn them into impactful social media posts or email newsletters. TLDR (www.tldrthis.com) is a browser extension that automatically summarizes articles, extracting key points and generating concise summaries. 
  • Data to Visuals: Transform raw data into informative infographics or charts, making complex information more understandable and shareable. Vizly (www.vizly.fyi) is an AI tool that creates interactive data visualizations, and you can try it out for free. 

Example: Take a webinar on advancements in cancer research and repurpose it into a series of short social media videos explaining key findings, blog posts highlighting patient stories, and an infographic summarizing breakthrough treatments.

4. Design Eye-Catching Visuals

Beyond text, generative AI can also help you create visual impact. 

  • Generate Custom Images: While advanced tools like DALL-E and Midjourney offer powerful text-to-image capabilities, free alternatives like the insMind AI Image Generator  (www.insmind.com)  provide a great starting point for those without access to paid tools. 
  • Enhance Existing Images: Improve the quality and style of your photos with AI-powered editing tools such as Canva (www.canva.com) and Craiyon (www.craiyon.com). 
  • Create Graphics and Infographics: Easily design informative infographics or engaging social media graphics using AI-assisted templates and tools like Canva or Visme (www.visme.co). 
  • Accessibility Features: Generate descriptive captions or alt text, making your posts more accessible and SEO-friendly on social media. SEOWriting.ai (wwwseowriting.ai) is an AI writing tool for SEO-optimized articles and blog posts. 

Example: Create an infographic illustrating the signs and symptoms of breast cancer.

5. Social Media Optimization

Maximize and optimize your social media impact in the following ways: 

  • Instagram Story Ideas: Brainstorm creative concepts for your Instagram stories and visually appealing ways to present your story for maximum impact. 
  • Hashtag Suggestions: Identify trending or niche hashtags that will help your posts reach a wider and more relevant audience. 
  • Optimal Posting Times: Use AI to analyze your audience’s activity patterns and determine the best times to post for maximum visibility and engagement. 
  • Video Storyboarding and Scripting: Develop storyboards for social media videos and generate a video script using a tool like Invideo (www.invideo.io). a free video editor that transforms text into videos.  
  • Podcast Scripting: Streamline podcast creation by using AI to generate scripts. Tools like HearTheWeb (www.heartheweb.com) can even transform text into dialogue-style podcasts (HearTheWeb offers one free episode, then starts at $15/month for 5 episodes). 
  • YouTube Optimization: Use Google’s AI tool, Gemini, to create YouTube descriptions and concise summaries to boost video discoverability and viewer engagement. 

Example: Generate a series of Instagram stories that highlight patient stories and use AI-suggested hashtags to amplify visibility and engagement.

6. Audience Engagement Tools

Foster engagement with your audience in the following ways: 

  • Polls and Surveys: Gather insights, opinions, and experiences from your followers with interactive polls and surveys. 
  • Challenges and Campaigns: Spark interest and action by developing AI-generated ideas for social media challenges or health-related campaigns that resonate with your audience. 
  • Interactive Content: Create quizzes, interactive maps, or other engaging formats that encourage active participation. 
  • Live Q&A Sessions: Host virtual Q&A sessions with AI-powered chatbots or moderators to answer questions in real time and foster a sense of community. 

Example: Launch a TikTok challenge encouraging healthy lifestyle choices among patients, using AI-generated campaign ideas and interactive content to drive participation and awareness. 

How to Get The Most from Generative AI

Generative AI is a powerful tool, but like any tool, its effectiveness depends on how you use it.  The more precise and detailed your instructions, the better the results. Instead of vague requests, give the AI a clear direction. For example, rather than simply asking for a “blog post about patient advocacy,” specify a working title, the intended goal (e.g., to educate, inspire, or mobilize), the target audience, and a structured outline of key points. 

Ethical Considerations

Generative AI offers immense potential to enhance your advocacy efforts, amplifying your reach and streamlining tasks. However, to harness its power responsibly, it’s imperative to prioritize accuracy, transparency, and authenticity in its use. 

To re-iterate, always thoroughly fact-check AI-generated content to avoid spreading misinformation.  Be upfront about your use of AI tools. In full disclosure, while I used ChatGPT to outline this piece, the content is shaped by my own expertise and passion for the topic.  

Finally, remember, that generative AI is a tool to enhance your work, not replace your unique voice and perspective. AI-generated content should serve as a springboard for ideas,  allowing you to focus your time and energy on developing a message that is authentically yours. By infusing your content with personal stories, and lived experiences you can create authentic connections with your audience ultimately strengthening the impact and resonance of your advocacy messages. 

AI Allies: How Artificial Intelligence Can Support Patients To Cope with Cancer

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A cancer diagnosis can be both physically and emotionally challenging. As cancer patients learn how to cope with the disease[1] and manage side effects[2], artificial intelligence (AI) tools like ChatGPT are emerging as valuable allies. This article explores ten ways ChatGPT can help you manage your cancer journey more effectively.

What is ChatGPT

ChatGPT is an AI language model developed by OpenAI[3], designed to simulate human-like conversation. Think of it as a smart chatbot that can craft responses that sound like they came from a person all based on what you ask or tell it.

ChatGPT 4 is the latest version, offering advanced features and improvements over previous versions. [4] However, you have to pay to get the full benefits of ChatGPT 4. ChatGPT 3.5, though older, is still available for free and is a reliable option for those who don’t need the full capabilities of ChatGPT 4.

Are there Alternatives to ChatGPT?

Yes, several other chatbots and AI language models can understand and generate human-like text. Examples include Microsoft Copilot and Perplexity.ai.

10 Ways To Use ChatGPT to Cope with Cancer

1. Explaining Medical Terms

Medical jargon can be confusing. ChatGPT can break down complex terms into understandable language. For instance, you could ask, “What does ‘carcinoma’ mean in simple terms?” This can help you understand essential terms without feeling overwhelmed by medical language.

2. Detailing Treatment Options

ChatGPT can provide an overview of various treatments. For example, you might ask, “Can you explain the different types of chemotherapy?” Understanding your options can empower you to make informed decisions about your care.

3. Treatment Side Effect Management

Knowing what to expect from treatment can ease anxiety. ChatGPT can inform you about common side effects and how to manage them. For instance, you can ask, “How can I manage nausea during chemotherapy?” ChatGPT can provide detailed, user-friendly responses, helping you prepare for and cope with treatment side effects.

4. Medication Questions

Managing cancer medications can be complex, especially with multiple drugs involved. ChatGPT can help you understand your medication schedules, potential interactions, and what to do if you miss a dose. Sample questions might include, “Are there any foods or drinks I should avoid while taking this drug?” or “What should I do if I miss a dose of my cancer medication?”

5. Managing Stress and Anxiety

A cancer diagnosis can take a heavy emotional toll. It’s common to feel anxious, fearful, and uncertain, and having a supportive resource can greatly reduce these feelings. ChatGPT can serve as a virtual companion, available 24/7. While it cannot replace human interaction, it can offer a comforting presence during lonely or anxious moments. For instance, you might express, “I’m feeling overwhelmed,” and in return receive a supportive response such as, “I’m here for you. Let’s discuss what’s troubling you.”

6. Finding Resources and Support Groups

ChatGPT can suggest resources, including support groups and educational materials, to help patients connect with others and stay informed. It can be helpful to ask, “Can you recommend any online support groups for cancer patients?”

7. Exercise Recommendations

Engaging in exercise while undergoing treatment can enhance both your emotional and physical health by boosting your mood and energy levels. If you ask ChatGPT, “What are some safe exercises for someone undergoing cancer treatment?” it will  give you some suitable options.

8. Nutritional Advice

Proper nutrition can support your body’s healing process and improve your overall health. Ask ChatGPT, “Can you recommend a diet that supports cancer treatment?”

9. Preparing for Doctor Visits

ChatGPT can help you prepare questions for doctor visits so you can get the most out of your appointments. For instance, you might ask, “What questions should I ask my oncologist about my treatment plan?”

10. Symptom Tracking and Management

ChatGPT can provide tips on how to monitor and manage your symptoms more effectively. For example, you could ask, “How can I track my symptoms and know when to call my doctor?” This can help you stay proactive about your health.

How to Ask Clear Questions to ChatGPT

If you want the best responses from ChatGPT, it’s important to ask questions that are clear and specific. Below are some tips to help you do this.

  • Be specific: Clearly state what you want to know. Instead of asking, “Tell me about cancer,” ask, “What are some common side effects of breast cancer treatment?”
  • Provide context: Give background information if relevant. For example, “I am undergoing radiation therapy for lung cancer. What side effects should I expect?”
  • Ask follow-up questions: If the initial response isn’t comprehensive, ask additional questions to get more detailed information.

Using AI with Discernment: A Word of Caution

While ChatGPT can provide valuable support, it’s important to use it with discernment. AI is not a doctor; it’s a sophisticated algorithm designed to process and generate human-like text. As much as ChatGPT aims for accuracy, it may occasionally produce incorrect or outdated information. Always cross-check with reputable medical sources before making decisions based on AI advice. As AI continues to evolve, its role in healthcare will likely expand[5], but human oversight remains indispensable.

[1] Optimizing ChatGPT: How Patients With Cancer Can Use AI as a Thought Partner | Cancer Nursing Today

[2] Artificial intelligence chatbots will revolutionize how cancer patients access information: ChatGPT represents a paradigm-shift | JNCI Cancer Spectrum | Oxford Academic (oup.com)

[3] Introducing ChatGPT | OpenAI

[4] GPT-4 vs. ChatGPT-3.5: What’s the Difference? | PCMag

[5] Walker H, Ghani S, Kuemmerli C, Nebiker C, Müller B, Raptis D, Staubli S Reliability of Medical Information Provided by ChatGPT: Assessment Against Clinical Guidelines and Patient Information Quality Instrument J Med Internet Res 2023;25:e47479

URL: https://www.jmir.org/2023/1/e47479

DOI: 10.2196/47479

Empowering Patient Advocacy: A Guide to Launching Your Voice on Substack

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If you spend any time online, you’ve probably heard of Substack, either through a newsletter subscription or from a favorite writer or blogger. But what exactly is Substack, and why is it gaining traction in patient advocacy?

Founded in 2017, Substack is a publishing platform that empowers creators to start and grow their own publications, blogs, newsletters, and podcasts.  The platform is known for its user-friendly interface and simplified setup process. While other blogging platforms may require some technical knowledge to navigate, Substack allows users to start blogging almost immediately after signing up. In addition, Substack’s subscription model provides creators with a straightforward way to monetize their content.

Beth Gainer, who initially started blogging after a breast diagnosis on WordPress, chose Substack for her current blog on art and self-care (bethlgainer.substack.com).  “I initially paid for WordPress,” she said, but “after trying to navigate this complicated platform, I realized I would need a designer to help me. I spent many hours trying to design the website myself, but I am no web designer, and obtaining one would make me dependent on that individual, not to mention costly. Using Substack is such a relief! It is so user-friendly and I like that Substack acts as a newsletter that is delivered to subscribers’ emails.”

Beth has also found a supportive community on the platform. “Substack has a support system, where experts answer questions and provide information. It supports writers, who, as we know, are often not supported in their endeavors.”

The Substack monetization feature is not something Beth is interested in, ”because most readers can’t afford to pay to read several blogs. I know I can’t.”   She believes monetization adversely affects community building.  “After I read a blog, let’s say, I want to leave a comment to participate in conversation, but sometimes I cannot because I don’t have a paid subscription to that blog. Thus, the conversation related to a blog becomes muted because fewer voices and perspectives are heard,” she explained. “Frankly, I feel deflated when I see an interesting blog heading but am unable to read or interact with that blog unless I become a paid subscriber.”

Beth added that while she is using Substack to discuss and showcase her art, which she sells, “whether or not a reader purchases my art, I want my blog’s content to always be free and accessible to anyone. This helps build a true community. I hope that Substack continues to allow free subscriptions indefinitely.”

After more than 13 years of blogging, writer and breast cancer advocate, Nancy Stordahl decided it was time for a change. She started a new blog on Substack (nancyspoint.substack.com) to expand her reach to a new audience.  “My readership on WordPress, as far as numbers go, hadn’t changed much in a while,” she said, “so I’m hoping to gain some new readers, as well as keep the ones I have, of course.”

Like Beth, Substack’s newsletter format is something that appeals to Nancy. “Mailchimp was getting too expensive for me. Once you reach a certain threshold it’s no longer free. That was fine. But I had reached the next threshold, and the monthly rate was going up again. It wasn’t feasible for me to pay for yet another tier jump.”

Substack’s multi-media format, such as hosting a podcast, audio readings and adding notes, is also a selling point for Nancy.  “Substack is popular right now, some might say trendy, “ she said, “but as an advocate and an author, it felt like something I wanted to try. My books are a significant component of my advocacy, and Substack is a great place for authors.”

Although Nancy doesn’t currently monetize her writing, she is a “big believer in compensating bloggers, writers, and advocates for their work. Advocacy isn’t easy (nor is writing) and too often advocates (and writers) are expected to offer their time, input, writing, or whatever it might be for free. That is not right. I may or may not utilize this option at some point. Regardless, my new articles will likely remain free, and there will always be a free or no pledge option.”

When it comes to community building, Nancy has noticed that “thus far, her ‘old subscribers’ have been pretty quiet on Substack, but many have stuck with me. There’s probably a learning curve for me and for them as well as far as them becoming engaged. A bit of patience is needed.”

How To Start A Substack Publication

Having read about Beth and Nancy’s experience, you may be tempted to create your own Substack publication. Below are the steps you should take.

  1. Create an Account: Visit Substack.com and click on “Start Writing” to create an account. Set up your profile with a photo, your first name, and a short bio.
  2. Choose a Subdomain: A subdomain on Substack is a unique web address that identifies a publication on the Substack platform. When you sign up for Substack, you’re given a default subdomain that you can customize  – for example, nancyspoint.substack.com or bethlgainer.substack.com. You can also connect a custom domain to your publication. Using a custom domain for your Substack publication allows you to use your own web address instead of the default yourname.substack.com for your newsletter.  For use of a custom domain, Substack charges a one-time fee of $50 USD.
  3. Turn on Paid Subscriptions: You can choose to turn on paid subscriptions, or publish for free. If you turn on paid subscriptions, Substack will keep a 10% cut of revenues.
  4. Choose a Theme: Choose one of the basic themes provided by Substack. This will be the visual layout of your publication.
  5. Upload Your Email List: If you already have an email list of potential subscribers, you can upload it to Substack. This will allow you to reach out to these individuals with your first post.
  6. Publish Your First Post: Your first post could be a text post, discussion thread, podcast, video, or note. Make sure to include a “subscribe” button so that readers can easily subscribe to your publication.
  7. Customize Your Publication: Your name, logo, layout and publication descriptions are all easy to customize using the settings.
  8. Create an Editorial Calendar: Consistency is key to growing your publication. It’s recommended to publish a post at least once a week as a benchmark to get started. Publishing on a regular schedule helps readers build a habit and demonstrates your own commitment to your work.
  9. Announce Your Publication: The launch is an important moment for your publication. It’s an opportunity to summon your supporters and drive a wave of excitement, attention, and subscriptions2. Publish an announcement post and let the world know you are starting something new.

For more blogging tips, check out 9 Tips to Help You Build a Better Advocacy Blog

Empowering Patients: Bridging the Health Literacy Divide for Informed Decision-Making

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Health literacy, as broadly defined by the World Health Organization,  involves the capacity of individuals to “gain access to, understand, and use information in ways which promote and maintain good health for themselves, their families, and their communities.”

The goal of health literacy is not ‘dumbing down’ information; it’s about leveling up and empowering individuals to make informed decisions about their health and medical care.

The State of Health Literacy in the U.S.

According to the National Assessment of Adult Literacy, 36% of adults in the United States possess basic or below-basic health literacy. This statistic has profound and multifaceted implications. Firstly, low health literacy contributes to health inequality. Health literacy is a major barrier to accessing health resources and services. This imbalance contributes to disparities in health outcomes, creating a divide that widens existing inequalities.

Secondly, low health literacy affects individuals’ ability to engage in self-care effectively. Almost four out of ten adults struggle to manage their medications or misunderstand essential medical instructions.

Moreover, trust in healthcare providers is closely tied to health literacy. Effective healthcare relies on trust. Low health literacy, however, can undermine trust in healthcare professionals.

In our role as patient advocates, we strive to make health information more accessible, reliable, and easily understandable. Below is a checklist of seven steps you can take to improve your advocacy’s health literacy level.

7-Point Checklist to Improve Health Literacy

1. Accessibility

Healthcare is often filled with jargon and technical language, making it intimidating and confusing. The goal of our advocacy is to minimize health communication barriers so that individuals can make informed decisions no matter what their educational background or medical language experience may be. Embracing accessible language bridges the communication divide, empowering individuals to navigate the complexity of healthcare with confidence.

Actionable Tip: Break complex information down into smaller, digestible chunks to make it easier to understand. Organize information using clear headings and bullet points. If medical terms are unavoidable, provide clear definitions.

You can learn more about accessible content by reading Transforming Your Social Media Presence: 5 Steps to Foster Inclusivity and Advocate for All

2. Clear Navigation

Clear navigation of health content requires logical organization of information. For instance, when presenting information about a medical condition, organize it chronologically from symptoms to treatment options.  Additionally, a navigation system that is clear and easy to use should also work across a wide variety of devices, ensuring a consistent experience across computers, tablets, and smartphones.

Actionable Tip: Make your website or blog easy to navigate. There should be a prominent search bar and a menu with clearly labeled categories or a clickable icon to help people find the information they need when they visit your site.

3. Cultural Sensitivity

When health information reflects an individual’s cultural context, they are more likely to understand and resonate with it.  Health and culture are deeply intertwined, and cultural sensitivity involves recognizing and respecting that health is perceived and pursued differently in different cultures. Trust can be built by respecting these differences, dispelling misconceptions, and bridging gaps.

Actionable Tip: Avoid making assumptions about individuals based on stereotypes or generalizations. If possible, seek feedback from community leaders or representatives to ensure that your communications align with cultural values and sensitivities.

4. Visual Aids

Visual aids, such as charts, graphs, illustrations, and diagrams, enhance health communication by making information more engaging and accessible. Visual learners can grasp health-related concepts more easily through these aids than through text-based information. Visual aids also act as a universal language transcending linguistic barriers and making health information accessible to a wider range of individuals.

Actionable Tip: Ensure visual aids are accessible to everyone.  Provide alternative formats for those with visual impairments, such as text descriptions or audio explanations.

Further Reading: Patient Advocacy: 6 Tips for Making A Visual Impact on Social Media – Patient Empowerment Network (powerfulpatients.org)

5. Inclusive Design

Different learning styles are recognized through inclusive design. Visual aids may be preferred by some, whereas auditory information may be preferred by others. By considering different learning styles and abilities, inclusive design empowers individuals to actively participate in health education, leading to improved health literacy.

Actionable Tip:  Use alt text (short for alternative text) for images. Individuals with visual impairments can understand website images this way. In addition, consider closed captions for videos and readable fonts with sufficient color contrast.

6. Interactive Platforms

Interactive content, such as live video streaming creates an experience that reaches beyond static information dissemination. It empowers individuals to engage with expert insights and creates a sense of community around health-related topics. This approach can contribute significantly to enhancing health literacy.

Actionable Tip: Bring in healthcare professionals to share their expertise on your livestream.   Ask attendees to submit questions in advance or during the live session to encourage active participation. Closed captioning should be available to ensure inclusivity and accessibility.

7. Trustworthy Sources

Users feel more confident in the reliability of health information when credible sources and publication dates are transparently disclosed. Maintain trustworthiness by reviewing and updating health content regularly. This ensures that information remains accurate, aligns with the latest research, and meets evolving standards.

Actionable Tip: To keep users up to date on the currency of content, clearly indicate when it was last reviewed or updated. By regularly updating your content, you demonstrate your commitment to providing accurate and relevant information to your audience and establish long-term trust.

Further Reading: 12 Tips to Create an Educational and Inspiring Roundup of Healthcare News

Conclusion

The patient advocacy community can play a key role in closing the health literacy gap. By championing accessible, trustworthy health information, we contribute to a more equitable society. Our mission is clear: empower patients through knowledge, and transform health outcomes for all.

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

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

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

January: Define Your Vision

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

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

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

February: Build Partnerships

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

March: Capitalize on Awareness Days

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

April: Compile a Glossary of Medical Terms

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

May: Optimize Your Social Profiles

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

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

June: Conduct A Content Audit

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

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

July:  Mid-Year Review and Adjustments

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

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

August:  Hone Your Writing Skills

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

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

September: Perfect Your Presentation Skills

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

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

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

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

October: Try Some New Tools

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

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

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

November: Express Gratitude

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

Here are some suggested ways to show your appreciation:

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

December: Reflect and Plan for the Future

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

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

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

Elevating Cancer Advocacy: 10 Strategies for Effective Information Dissemination

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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

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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

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

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

1. Choose accessible fonts

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

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

2. Use alt text for images

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

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

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

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

3. Add captions and subtitles to videos

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

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

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

4. Write simply and clearly

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

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

5. Use inclusive language

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

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

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

Patient-Centric Care

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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

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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

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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

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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.