Tag Archive for: patient advocate

The Patient Advocate’s Guide to Social Media Content Planning

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

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

Why You Should Plan Your Social Media Content In Advance

Creates Consistency:

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

Algorithm Visibility:

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

Proactive Advocacy:

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

Enhances Collaboration:

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

Alleviates Burnout:

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

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

1. Create a Content Calendar

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

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

Choose a Calendar Format

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

Set a Time Frame

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

Identify Key Dates and Events

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

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

Plan Content Distribution

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

Maintain Flexibility

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

2. Allocate A Mix of Content Types

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

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

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

3. Plan Posting Frequency

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

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

4. Schedule Posts

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

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

5. Monitor and Adapt

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

Here are some key metrics to track:

Engagement Metrics:

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

Reach and Impressions:

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

Click-Through Rates (CTR):

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

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

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

Mastering Instagram for Patient Advocacy: 10 Tips for Success

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

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

1. Craft A Compelling Profile

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

2. Share Stories

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

3. Optimize Visual Content

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

4. Create a consistent visual identity

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

5. Use Hashtags Strategically

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

6. Leverage Story Highlights

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

7. Engage and Interact

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

8. Collaborate and Amplify

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

9. Include Calls to Action

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

10. Measure and Adapt

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

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

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

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

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

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

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

Recognizing the Power of Social Media 

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

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

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

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

Building Communities Through Social Media 

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

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

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

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

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

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

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

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

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

Taking Things Offline 

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

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

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

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

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

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

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

Dr. Ebony Hoskins: Why Is It Important for You to Empower Patients?

Dr. Ebony Hoskins: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

 Patient empowerment is a vital part of the patient experience. Ovarian cancer expert Dr. Ebony Hoskins from MedStar Health shares her methods for moving her patients to empowerment and her reasoning for her different empowerment methods.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

Dr. Heather Wakelee: Why Is It Important for You to Empower Lung Cancer Patients?


Dr. Hoskins:

I empower my patients by, number one, educating them on their diagnosis and providing information regarding any treatment options side effects. So one, education. The second thing, how I empower my patients is allowing them to ask questions, whether they think it’s an easy question or a hard question. So having an open discussion about what…

I empower my patients by educating them on their diagnosis, the treatment options, side effects. So number one, education. Number two, I think we need to have an open communication. So allowing them to ask questions, whether they think it’s an easy or a hard question. And another part of empowerment is making sure they have another set of ears. Sometimes the shock and awe of a diagnosis, they can’t hear everything that you say.

So having either a close family member or a friend that’s there for a visit that can kind of help advocate for them and also be a second pair of ears. I think it’s all important in terms of having a good trusting relationship to empower our patients, to let them know that they are involved in the process and also know that they have a trusting doctor that they can rely on for their care going forward.

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

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

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

Step 1: Identify relevant cause awareness days

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

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

Step 2: Plan your strategy

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

Step 3: Create your content

Make your content engaging by following these tips:

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

Step 4: Spread the word

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

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

Step 5: Participate on the day

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

Step 6: Follow up

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

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

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

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

Tools for Accessing Quality Prostate Cancer Care

Tools for Accessing Quality Prostate Cancer Care from Patient Empowerment Network on Vimeo.

What factors could impact a prostate cancer patients access to quality, affordable care? This animated video reviews common obstacles and provides tools and resources to help address barriers to care.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Living With Prostate Cancer

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need



Hi! I’m Anthony, and I’m living with advanced prostate cancer. This is Niki, my nurse.  

Just like prostate cancer doesn’t behave the same way in every patient, each prostate cancer patient has different factors that could impact their access to quality, affordable care. 


Exactly, Anthony. There are obstacles that may affect their potential to manage their cancer.    

These barriers, which are also called health disparities1, are complex and may include things like:  

  • Not having health insurance – or having limited insurance. 
  • Experiencing racism and discrimination. 
  • Language barriers if English is not the language you are most comfortable with2. 
  • Cultural barriers. 
  • Experiencing financial constraints. 
  • A lack of sick time or paid time off in the workplace. 
  • Living in a remote or rural area with limited access to care. 
  • Or, a lack of education or health literacy. 


And overcoming or addressing these barriers is the goal of health equity.  


Right! EVERYONE should have the access to quality care. And while it isn’t possible to solve these problems overnight, there are resources and support services to help people with prostate cancer. It is important to identify and to discuss your barriers with your healthcare team as they are unique to each individual patient. 


First and foremost, as we’ve mentioned in prior videos – don’t hesitate to speak up if you feel you are receiving unequal care. You can consider changing doctors if you don’t feel you’re receiving fair treatment, or if you’re not comfortable with your team. 

But the burden to access better care shouldn’t fall on you. Your team is there to help, right, Niki? 


That’s what they are there for! And the best place to start is by reaching out to a nurse navigator or social worker on your team. They may work with you and identify any challenges in your way and offer support resources to guide you in the right direction.  


Exactly – my social worker helped me find an organization that provided transportation to and from my treatment appointments.  

Niki, are there other services that a nurse navigator or social worker help you connect with? 


Absolutely – let’s walk through some examples: 

  • There are resources that can help with the financial strain of cancer care. Patient assistance programs are in place for people who don’t have health insurance or who are underinsured. They are managed by government agencies, pharmaceutical companies, and advocacy groups; and, in some cases, these programs can help cover the cost of medications or provide them at a discounted rate.
  • Team members who provide emotional support are available to help you such as a social worker, counselor, therapist, or psychologist. 
  • If language is a barrier, translators can be made available to join appointments with you, so you can actively participate in your care discussions and decisions.  And you can ask for materials in the language you are most comfortable with. 
  • And if your job is affecting your ability to get care, many advocacy groups have resources that can support you in advocating for your rights in the workplace. 


Those are all wonderful support services, Niki. 

I also want to add that if you are having trouble understanding your disease, advocacy groups have excellent materials in patient-friendly language. Download the guide that accompanies this video for a list of recommended organizations. 


That’s right. And, many medical centers have patient advocates available to help you communicate with your team, so you can get the care you need and feel confident in your decisions. Remember, you are not alone! 

We hope this video helped you feel more empowered to ask for resources. Thanks for joining us! 


And visit powerfulpatients.org/pc to access more videos with Niki and me. 

Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need from Patient Empowerment Network on Vimeo.

 What do care partners need to know to help care for their loved one AND themselves? This animated video reviews the role of a care partner, discusses steps for supporting a loved one and provides tips for maintaining self-care.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Living With Prostate Cancer

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Tools for Accessing Quality Prostate Cancer Care



Hi! I’m Anthony, and I am living with advanced prostate cancer. This is my nurse, Niki.  

And this is my wife, Jane. She’s not just my wife, she’s also my care partner. From helping with my appointment schedule to communicating with my healthcare team, she works with me to manage my prostate cancer. 


And many of you may be care partners like me. The goal of this video is to help you understand your role and to gain tools to help you support your loved one in their cancer journey. And that includes prioritizing your own self-care.  

Niki, we’ve talked about some of the things I do to help Anthony, but how would you describe the role of a care partner?  


A care partner is someone who works with their loved one on their care every step of the way – from diagnosis to survivorship.  

It’s important to mention that anyone can play this role – friend, family member, or loved one – whomever you trust with supporting your health.  


And there isn’t a single way be a care partner. You can provide support in a way that feels comfortable and natural to you. 

Niki, what are some of the ways a care partner can help?   


Yes – let’s review a few steps. Care partners can assist by: 

  • Learning about your loved one’s prostate cancer, so you can feel confident in participating in conversations and decisions. You can ask their healthcare team for educational resources. 
  • And participating in doctors’ appointments by taking notes and requesting post-visit summaries so that you can review the information presented. 
  • Next, helping your loved one access and use their patient portal and maintaining schedules and organizing medical records. 
  • Listening to your loved one and assist in weighing the pros and cons of care decisions. 
  • And monitoring your loved one’s emotional health. 


That’s a great point, Niki. Sometimes a care partner will notice that their loved one is feeling low or acting differently before they notice anything themselves. Care partners can help communicate these issues to the healthcare team, and can even reach out to a mental health professional or social worker to help.  


And that leads me to the next important step that many care partners often overlook: Taking care of yourself.  


Right – and as we experienced firsthand, this is essential. Jane struggled with making time for herself after I was diagnosed, and it negatively impacted her health.  


I was totally drained. But adding time for myself on the calendar and keeping up with my self-care appointments made me feel better. What else can you do? 

  • First, prioritize your health by scheduling and keeping your OWN health care appointment. 
  • Continue doing the activities that you enjoy – there are ways to make time in the schedule, even if it doesn’t seem like it.   
  • Find and use strategies that work for you to manage stress, like exercise, reading a book, or anything you find relaxing. Even a short walk with a friend can have a big impact. 
  • And make a list of tasks you can pass off to friends and family members who offer to help.  


That’s great advice, Jane. I’ll also add that caring for a loved one can be challenging – it’s normal to feel a range of emotions. If you’re feeling overwhelmed, talking with someone about how you’re feeling can make a difference. And speaking candidly and openly with other care partners in a support group setting can also provide comfort and peace of mind. 

Just like Anthony sought the advice of a counselor and social worker, it’s important that Jane find that support SHE needs as a care partner. 


We hope this video helped you gain tools and strategies for helping support a loved one – and yourself. 


Download the guide that goes with this video to review what you learned.  

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

Living With Prostate Cancer

Living With Prostate Cancer from Patient Empowerment Network on Vimeo.

What follow-up care is important for people with prostate cancer? This animated video discusses support and tools for managing life with prostate cancer.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Tools for Accessing Quality Prostate Cancer Care



Hi! I’m Niki and I’m a nurse practitioner. And here with me is Anthony, who is living with advanced prostate cancer. 


Thanks for joining us!  

In this video, we’re going to discuss tools for managing life with prostate cancer.  


Living with prostate cancer means that patients will be monitored for signs that the cancer may be progressing, and assess if it is time to treat the cancer or consider a different treatment plan.   


But for all patients, an important part of living with prostate cancer is follow-up care. This may include:  

  • Disease monitoring and managing symptoms and side effects, 
  • As well as emotional support. 
  • And, in some cases, creating a survivorship plan with your team.  


Let’s start with disease monitoring: This may include regular exams and testing to keep an eye on your disease progression or recovery. And your individual situation and risk will determine the frequency of your appointments. 


And for patients like me who have had treatment, managing short and long-term side effects is an essential part of living with prostate cancer.  

One issue that can be challenging for some prostate cancer patients is the impact of treatment on a patient’s sexual function and self-image.  


That’s right, Anthony. It’s important to note that there ARE options that may help manage certain side effects, but you have to talk about them with your healthcare team. While bringing up sexual side effects or bladder control issues to your provider may be difficult, it’s the only way your team can assist you.  


In my case, I found it easier to communicate my sexual issues in writing, using the patient portal. Plus – don’t forget that care partners can be a resource to help bring up difficult topics. 


Exactly – utilize your resources and communicate in a way that you feel most comfortable! 

And, as we mentioned, there can also be emotional side effects for men living with prostate cancer. Patients may feel stressed about their diagnosis or anxious about their cancer returning or progressing. Working with a health professional like a social worker, counselor, therapist, or psychologist may help reduce anxiety and worry.  


Right – the other approach that really helped me emotionally was participating in a support group. 

Support groups allow men to meet and interact with others who are living with prostate cancer and provide a platform to share experiences and information. In a support group setting, it may be easier for men to share details that they don’t necessarily want to share with loved ones.  


That’s a great point, Anthony. Studies show that participating in a support group can help cancer patients cope with anxiety and depression 


It certainly encourages me to know that other men are facing similar challenges. While my support group meets in person, there are online options for people who prefer to connect in a virtual setting.   


But as much as it can be reassuring, the support group format isn’t for everyone. Talk to your social worker or counselor about additional support options to find an approach that feels most comfortable to you.  


Now that we’ve walked through disease monitoring and resources for emotional support, let’s talk about survivorship. Niki, what is a survivorship care plan?  


Sure. A survivorship care plan organizes your follow-up care. It may include: 

  • Information about the treatment you received. 
  • A follow-up schedule for exams and tests. 
  • A list of potential symptoms and side effects. 
  • And lifestyle recommendations to establish and to maintain healthy habits.  

Your healthcare team, along with a care partner, can help you develop and stick to a plan. 


That’s great advice, Niki. Now that we have learned some tips for living with prostate cancer, what can you do to participate in your follow-up care?  


  • Make sure to schedule and keep regular visits with your team – including your general practitioner – so that all aspects of your health can be monitored.  
  • Report any new symptoms that you experience – no matter how small. 
  • Next, don’t hesitate to speak up about lingering side effects – including bladder and sexual side effects – so your team can identify solutions. 
  • And ask for emotional support and resources. 
  • Finally, if it’s right for you, talk with your doctor about a survivorship care plan. 


Thanks for joining us! Be sure to download the guide that goes with this video to access the information we discussed.  

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials from Patient Empowerment Network on Vimeo.

What do you need to know about prostate cancer clinical trials? This animated video reviews the clinical trial process and provides questions to ask your healthcare team about trial participation.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Tools for Accessing Quality Prostate Cancer Care

Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need



Hi, I’m Anthony, and I’m living with advanced prostate cancer. And this is my nurse practitioner, Niki.  


Thanks for joining us! 

Without medical research, advances in prostate cancer treatment can’t move forward. Throughout this video, Anthony and I are going to discuss a key part of research: clinical trials. We’ll review what they are and how they work.  


Niki, what is a clinical trial exactly? 


Excellent question, Anthony. Clinical trials are research studies in people who have a specific condition, or are healthy volunteers, to help find new ways to treat diseases – like prostate cancer.  

Most clinical trials examine the safety and efficacy of medicines, vaccines, and other medical treatments. 

And clinical trials are the main path for cancer treatments to be approved. The U.S. Food and Drug Administration – also known as the FDA – requires that all new medicines and treatments go through the clinical trial process before they are approved. 

So, why would someone consider participating in a trial? Some people choose to participate to access a potential new medicine or treatment that’s not yet approved to see if it helps their condition. And some people want to help move research forward to help others with the same condition – while other people participate for both reasons. 


That’s right – advancing research through participation is an important path to new options for treating prostate cancer.   

So, Niki – can you explain how clinical trials are designed to answer key questions? 


Yes, of course. Most importantly, each clinical trial has a protocol, which is a document that sets guidelines that define and outline the activities of the clinical trial as well as who may be eligible to participate. 

The early phase trials determine the safety of the treatment, and the latter phases typically examine if the potential therapy is effective. 

All along the way, the study clinic staff  – including nurses, researchers, and study doctors  –check clinical trial participants regularly to monitor for any safety concerns.  


But to be successful, clinical trials require people to volunteer. And people interested in participating will have to meet the trial criteria to participate, correct? 


Yes, that’s correct, and this can include things like a person’s age, disease stage, prior treatments, and overall health. Remember that everyone’s situation is unique. 


And people often have misconceptions about clinical trials that prevent them from considering participation. Let’s run through a few common concerns. 

For instance, some people worry that they will receive placebowhich is a non-active medicine  –  if they participate in a clinical trial. Niki, is this true? 


A cancer patient would never receive only the placebo without the current standard-of-care and will always be told that the trial will contain a placebo in advance of their participation. 


OK, that makes sense. Some people also wonder about the risks and safety of a clinical trial.  Niki, can you share some information about this?  


Great question. Most importantly, research must meet ethical standards to ensure that participants are protected. There is a strict screening and testing process that occurs before a person can participate.  

And, clinical trials are voluntary  – participants have the right to leave the trial at any time.  

Additionally, there is an informed consent process, which ensures that people are fully informed about all potential risks and benefits and helps people understand their rights before taking part.  


Ok. Thank you for clearing that up. Niki, what about the misconception that clinical trials are just a last-resort treatment option?  


They are not just a last-resort option at all, Anthony. No matter when a patient was diagnosed with prostate cancer, or where they are in their care, clinical trial participation may be an option.  


So, if someone is interested in participating in a clinical trial or learning more about clinical research – where do they start?  


Your doctor is the best source of information. You can ask your doctor: 

  • What trials are available to me? 
  • Is there a clinical trial that you would recommend for me? Why? 
  • What are the possible risks and advantages of participating in this clinical trial? 
  • Are there costs associated with the trial, and will my health insurance help cover costs? And if not, is there financial assistance available?  
  • Where is the trial being conducted? Is there a clinical trial available to me in my local community? If the trial isn’t nearby or convenient, is there transportation and/or housing assistance? 
  • Finally, if you want to learn more about ongoing prostate cancer research and clinical trials, ask your doctor for a list of credible resources. 


Be sure to download the guide that accompanies this video to access a list of these questions and to help you review what you learned. 


Thanks for joining us! And visit powerfulpatients.org/pc to access more videos with Anthony and me. 

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan from Patient Empowerment Network on Vimeo.

How can you engage in your prostate cancer care? In this animated video, you will learn about factors that may impact a prostate cancer care plan and tools for partnering with your healthcare team on treatment decisions.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

Living With Prostate Cancer

Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need



Hi, thanks for joining us! I’m Niki, and I’m a prostate cancer nurse practitioner. And here with me is Anthony, who is living with advanced prostate cancer.   


Throughout this video, Niki and I are going to discuss factors that may impact a patient’s prostate cancer care plan.  

And as we’ve mentioned in previous videos, it’s important to set goals with your team and understand all of your options before deciding on an approach.  


Right, Anthony. So, what could impact a treatment plan decision? Factors may include: 

  • Your age and overall health, including any existing conditions that you may have.
  • Disease-related symptoms may also affect your options.
  • The stage and grade of your prostate cancer and whether you need to be treated right away.
  • Test results, including genomic testing, which identifies the presence of genetic mutations in the cancer and may inform how your cancer will behave. 
  • Possible side effects, both short term and long term, may also affect your choices. 


And, of course, your personal preference should guide the decision as well as how the option may impact your lifestyle. Be open with your care team about what’s important to you and be clear with your goals, including life plans and personal commitments.   

Here are some tips to take a more proactive role in your care: 

  • Talk with close family members and friends about your options. 
  • Consider a second opinion to help confirm your approach. 
  • Talk to your healthcare team about your condition and care options. And ask them for resources available to you, including financial help and emotional support, when making decisions.​ 
  • You can also visit advocacy group websites that have information about prostate cancer, treatment options, and support groups, to help you understand what’s available.​ 


Those are great tips! It’s also a good idea to ask your doctor what they feel is the best approach for you and why. Remember, there is no one-size-fits all approach, and what works for one person may not work for you. 


Thanks for joining us! Be sure to download the guide that accompanies this video to help you review what you learned.  

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

Advocacy Tips From an AML Patient

Advocacy Tips from an AML Patient from Patient Empowerment Network on Vimeo

AML patient and Empowerment Lead, Sasha Tanori, shares her advocacy tips, and the importance of being honest and open with your oncologist.

See More from [ACT]IVATED AML

Related Resources:

How Does One’s Culture Impact AML Care

How Does One’s Culture Impact AML Care

What I Wish I Knew Before My AML Diagnosis

What I Wish I Knew Before My AML Diagnosis

How I Overcame Biases During AML Treatment


Sasha Tanori:

Okay, so my number one thing, I guess I could…a tip sort of that I can give to women specifically or non-gendered people, if you want kids, I would definitely say to talk to your doctor as soon as you find out, even before you start doing the chemo, if you can just really, really talk to them and see, I think there’s anything that they can do for preserving your eggs for the future, because even though it may seem like you know it’s just no, not big deal. Not everyone gets the opportunity again. I know there are some people out there who might be able to, but it’s not a guarantee. And it sucks to have that opportunity kind of taken from you in a way, and I know it’s not something that you’re thinking like, “Oh well, it’s life for death.” And…yeah, I understand, and I get that, but in the moment, it may feel that way, but you never know how are you going to feel five, six years down the line when you’re pushing 30 and you’re like, “Oh my gosh, My opportunity is gone. You know, there’s nothing I can do about it.”

So that would be my number one tip. Definitely to be honest. Be honest and open with your oncologist, find some type of tips or tricks, or even if you just need someone to talk to about the infertility…it’s definitely worth it. Another thing I would say is to be really, really open with your oncologist about everything you’re going through. Nothing is too embarrassing and I know that’s a lot easier said than done, but I think being honest about what you’re going through, whether it’s mentally, if you’re going through depression, anxiety, if you’re having suicidal thoughts or tendencies, that’s definitely something you should talk to your oncologist about, so they can help you reach out to find some type of counseling. Mental health is very, very important when it comes to this. Your mental health will make or break you during this journey, and you have to find some type of close community, whether it’s your friends, your friends, your family, or just your oncology team, like someone that you could reach out to and talk to about everything, lay it all on the table and now I’m feeling guilty because I survived that my friend didn’t, or I’m feeling anxious because I have the scan coming up, and this is the third one in like two months, you know? There’s so much things that are going on in your head and to keep it to yourself, it’s a lot and it’s not fair to you, you need to be able to speak up and tell people what you’re going through, it doesn’t matter who it is if it’s your friend, your mom, even your oncologist, but they’re going to understand and they’re going to help you.

There are lots of resources out there that will definitely make this a lot easier. Another tip I would say is, talk to your oncologist about the good, the bad, and the ugly when it comes to your side effects because if you stay quiet about it, you’re going to really regret it. There have been many times where I was just too embarrassed to be like, :Oh you know what, I have this really bad rash on my butt, and I don’t know what to do about it.” So finally, they’re like, “Why didn’t you say something? Oh yeah, we can give you a cream, or we can do this or that for you.” And you’re just like, “Oh, okay, that feels so much better. Thank you.” But at the time, you’re probably just like, “Oh my God, I’m so embarrassed, I don’t want anybody to know about this. I don’t even want to tell my parents, I don’t want to tell my friends.” But I mean, this is all related to your cancer journey, one bad side effect can lead to something else, which could lead to something else. So it’s very, very good to try and be open and honest when it comes to your side effects, your emotions, your body, if you’re gaining weight or losing weight, if you’re losing your hair again, if you’re losing your eyebrows, you know talk to them, find out if there’s any solutions that can help because…

It’ll definitely make a big difference. I would say definitely another big thing would be to try and build a community through social media. Having friends or even just strangers on your feed that you see go through the same things you go through makes you feel so much less alone. I have been able to… I’m very happy that I’ve been able to make friends on social media through Instagram, Facebook, Twitter, just start adding everybody goes on Facebook groups that are specifically for AML, so you can just type in AML recovery, AMLl survivors, AML, family groups, caregivers. There’s a lot of things out there that are definitely beneficial and it helps to talk to others about it, so you feel less alone. Definitely. So I think those would be my biggest tips for expressing your advocacy.

Share Your Feedback About [ACT]IVATED AML

Elevate Your Online Presence:

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

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

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

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


Set SMART Social Media Goals

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

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

Here’s how to make a goal SMART:

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

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

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

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

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


Perfect Your Social Profiles

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

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


Conduct a Social Media Audit

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

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

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

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

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


Conduct a Content Audit

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

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

 Here are the steps to conduct a content audit:

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


Create a Content Calendar

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

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


Repurpose Your Content

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

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

Here are a few ways to repurpose content:

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


Create Visual Impact

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

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

These are a few ideas to get you started:

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

For more tips read: 

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


Host a Live Virtual Event

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

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

Tips for hosting a successful virtual event:

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


Build Your Authority on LinkedIn

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

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

You can learn more here:

Patient Advocacy: How To Optimize Your LinkedIn Profile

Patient Advocacy: How To Boost Your Visibility on LinkedIn


Increase Twitter Engagement

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

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

Follow these steps to get the most out of Twitter:

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

More tips can be found here:

Patient Advocacy: How To Increase Twitter Engagement


Try Some New Tools

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

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

Check out the list at:

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


Evaluate Your Progress

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

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

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

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

Here’s to your social media success!

What Questions Should Patients Ask About Joining a Clinical Trial?

What Questions Should Patients Ask About Joining a Clinical Trial? from Patient Empowerment Network on Vimeo.

Before participating in a clinical trial, what questions should you ask? Dr. Pauline Funchain of Cleveland Clinic shares critical questions patients should ask their healthcare team when considering a clinical trial.

Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

Katherine Banwell:

If a trial is recommended, what questions should a patient ask about the trial itself? 

Dr. Pauline Funchain:

Yeah. I mean, I think when it comes to that, I think that the important things to ask, really, are what are the drugs involved, and what your doc thinks about those drugs. 

I think, what is the alternative? So, again, we were talking about option A, B, and C. Is this option A of A, B, and C, or option C of A, B, and C? Are there ones like Cindi mentioned, where if you don’t do it at this point, you’re going to lose the opportunity, because you started on something else. Because a lot of trials require either that a person has never gone through therapy, and so this is sort of first line trial. But some trials are you have to be at the second thing that you’ve been on.  

So, these are the things that matter to know. Are you going to lose an opportunity if you didn’t do it now, or can you do it later, and what is the preference? And I think, practically speaking, a patient really wants to know what is the schedule? Can I handle this? How far away do I live from the place that is giving this trial? 

What are the locations available? Because if there’s a trial and you have to come in every two weeks, or come in four times in two weeks, and then once every month after that, that makes a big difference depending on where you live, what season it is, weather, that kind of stuff.  

And I think the question that you don’t really have to ask, but a lot of people ask, is about cost. So, medical care nowadays is complex, it costs money when you don’t expect it to, it doesn’t cost money when it’s – you just don’t know what will and what won’t. Financial toxicity is something that we really care about. Every center is really trying its best, but it’s hard to do in this type of environment. So, people then get concerned that clinical trials might be even more complex.  

I think clinical trials are much less complex in that way, because a lot more of it is covered by the sponsor, whatever that sponsor is, whether that sponsor is the National Institutes of Health, as a grant, or a pharmaceutical company.  

But, in general, a clinical trial really should cost the same or less than whatever the standard medical care is; that’s the way they’re built. So, many, many people ask us that question, but I think that is the question that probably is less important than what are the drugs, what does your doc think about this, are you going to lose an opportunity if there’s a different sequence, and does this fit into your life and your schedule, and people who can give you rides.  

Katherine Banwell:

Yeah, right.  Are there resources available to assist with the financial impact of a clinical trial? 

Dr. Pauline Funchain:

There are not specific resources for clinical trials; there are specific resources for patients in general, though. There are things like helping with utility bills sometimes, sometimes with rides, I think a lot of clinical trials do pay for things like parking. In general, many trials themselves have extra financial support in them. There was a trial I remember that paid for airfare and lodging, because there were only five centers in the country, and so we had people fly in, and the whole thing was covered. 

It depends on the trial. But in terms of outside of trials, there are always patient advocacy groups and things like that, where certain things can get covered. But often, the types of things that get covered by those groups are the same things that get covered with normal medical care. 

How to Find a Clinical Trial That’s Right for You

How to Find a Clinical Trial That’s Right for You from Patient Empowerment Network on Vimeo.

If you are interested in participating in a clinical trial, where do you start? Dr. Pauline Funchain of Cleveland Clinic shares resources for patients on where to find and access a clinical trial that’s right for them.

Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

Katherine Banwell:

So, if a patient is interested in joining a clinical trial, where should they start? 

Dr. Pauline Funchain:

They can start anywhere. There are many places to start. I think their oncologist is a really, really good place to start. I would say an oncologist, depending on their specialties, will have a general grasp of trials, or a really specific grasp of trials. 

I would say that the folks who have the most specific grasp on trials – what is available, what isn’t available, what’s at their center versus the next state over center – are the academic medical centers; the ones that are sort of university centers, places like the Cleveland Clinic where the docs are specialized by the type of cancer. That group of folks will have the best grasp on what’s current, what’s available. 

And so, Cindi, your friend referred you. many people do say that. Just go to whatever your nearest university center is, just because there’s a lot more specialization in that sense. But I think it’s the age of the Internet, so people can look online. Clinicaltrials.gov is a fantastic place to look. It is not as up to date, I think, as something you can get directly from a person at a medical center, but it is a great place to start.  

There are many advocacy groups and websites that will point people to trials. I mean, there are Facebook groups and things, where people will chat about trials. But I think the detail is better at a site like clinicaltrials.gov, and even better with a cancer-specific oncologist at a academic medical center. 

Understanding Common Clinical Trial Terminology

Medical terminology can be confusing and is especially important to understand when reviewing information to learn about a clinical trial. Dr. Pauline Funchain of Cleveland Clinic explains common terms and phrases to help patients better understand the clinical trial process.
Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

Katherine Banwell:

Dr. Funchain, are there common clinical trial terms that patients should know? 

Dr. Pauline Funchain:

Yeah, there are trial terms that people hear all the time, and probably should know a little bit about. But I think the most common thing people will hear with trials are the type of trial it is, so Phase I, Phase II, Phase III. The important things to know about that are essentially, Phase I is it’s a brand-new drug, and all we’re trying to do is look for toxicity. Although we’ll always on the side be looking for efficacy for whether that drug actually works, we’re really looking to see if the drug is safe. 

A Phase II trial is a trial where we’re starting to look at efficacy to some degree, and we are still looking at toxicity. And then in Phase III is, we totally understand the toxicity, and we are seeing promise, and what we really want to do is see if this should become a new standard. So, that would be the Phase I, II, and III. 

Another couple of terms that people hear a lot about are eligibility criteria, or inclusion criteria. So, those are usually some set of 10 to 30 things that people can and can’t be. So, usually trials only allow certain types of cancer, and so that would be an inclusion criteria, but it will exclude other types of cancers. Most trials, unfortunately, exclude pregnant women. That would be an exclusion criteria.  

So, these are things that, at the very beginning of a trial, will allow someone to enter, or say, “You’re not in the safe category, we should not put you on a trial.” Many trials are randomized, so people will hear this a lot. Randomization.  

So, a lot of times, there is already a standard of care. When there’s already a standard of care, and you want to see if this drug is at least the same or better, then on that trial, there will be two different arms; a standard of care arm and experimental arm.  

And then in order to be fair, a randomized trial is a flip of a coin. Based on a electronic flip of a coin – nobody gets to choose; not the doc, not the patient. On that type of trial, you’ll either get what you would normally get, standard of care, or something new. So, that’s a randomized trial. Not all trials are randomized, but some are. And those are the things that people will run into often.