Tag Archive for: patient advocacy

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.

Is Technology Accelerating Progress in Myeloproliferative Neoplasm Care?

Is Technology Accelerating Progress in Myeloproliferative Neoplasm Care? from Patient Empowerment Network on Vimeo.

Is myeloproliferative neoplasm (MPN) care being advanced by technology progress? Expert Dr. Krisstina Gowin from University of Arizona Cancer Center discusses how MPN care has benefited from technology advances and explains two MPN technology tools and how they assist in MPN patient care.

Download Resource Guide

See More from MPN TelemEDucation

Related Resources:

How Can Myeloproliferative Neoplasm Patients Use Integrative Health

How Can Myeloproliferative Neoplasm Patients Use Integrative Health?

How Can MPN Patients and Care Partners Stay Aware of Telemedicine Options

What Are Potential Telemedicine Risks for Myeloproliferative Neoplasm Patients

Transcript:

Lisa Hatfield: 

So, Dr. Gowin, a couple of questions for you. Is technology playing a role in accelerating progress in MPN care?

Dr. Krisstina Gowin: 

Oh, absolutely. And I think some of the ways that it really accelerates progress is pulling us together. So what we need to recognize is that myeloproliferative neoplasms truly is a rare disease, and we just celebrated Rare Disease Day. But there’s a lot of challenge in treating patients and progressing the field forward in rare diseases because you can’t do the big clinical trials. It’s hard to come together because everything’s siloed, and there’s just a couple patients here, a couple patients there in each practice. But with digital health and clinical trials that are offered on a digital platform, it pulls the nation together and even the world together. And we’ve seen that. I’ve done an international survey-based analysis and I had 858 MPN patients from 52 countries participate in that survey. And so that just shows how it pulls the world together. And for the web app that we just discussed, we had 93 patients say they were interested within three weeks, and within actually a week, we identified them all and then took three weeks to actually accrue them to the trial. So it really speaks to A, how MPN patients are digitally engaged and excited about these kinds of platforms. And then B, how effective it really can be to pull the groups together.

So yes, I think it’s…and that’s really how we’re going to get progress is through these kind of interventions with a rare disease. And I hope it’s okay if we jump back to something you said, Dr. Lopez, which is, I think telemedicine is so so important to bring everyone together. And in particular, I see that on the transplant ward. And so in myelofibrosis, that’s the only curative therapy. And so many myelofibrosis patients actually go through allogeneic stem cell transplantation. And my goodness, that is a socially isolating experience. Patients are in the hospital, not uncommonly for at least 30 days and then have to be near their transplant center for three months, which often is away from home. So to pull in their support system, both through the acuity of the transplant themselves and then the couple of months after is so crucial to a successful transplantation. And I think through FaceTime and also the MPN support groups, which is very robust, the patient advocacy and the way the MPN network sticks together on a digital platform, I think is really unique and offers unique support.

Lisa Hatfield: 

Thank you. And then what role does technology play in the disease symptom management, and in particular, in clinical trials too. What role does technology play with clinical trials?

Dr. Krisstina Gowin: 

Well, I think it helps us through different, clinical trial accrual patterns, we can see who’s eligible where, so it helps us identify patients. It helps us to, understand the different kind of precision-based medicine approaches so we can start to pool the data, say for, particular mutations… ASXL1 mutations. And so it helps us in the precision medicine aspect of clinical trials and now we’re looking at symptom management and how do we really integrate that. So large survivorship platforms like Carevive, if you’ve ever heard of Carevive, is now integrating our validated symptom assessment form into the Carevive platform. So now we can really collect that data and use that to mine it for potential kind of retrospective analysis. So it’s helpful for clinical trials as well as for our clinicians and clinics to really identify changes in symptom burden.

And just as Dr. Lopez was mentioning, that we can track these over time and it can flag and say, “Oh, your symptoms are changing, they’re increasing over time,” and maybe we need to be thinking about that. And so Carevive is really kind of an electronic medical record driven it’s really a healthcare driven platform, but now there’s patient ones too. And I just learned about this two weeks ago, I was at an MPN conference in Phoenix and learned about MPN Genie. And so MPN Genie apparently, is tracking…patients are putting their symptoms in and that’s shooting that information to the electronic medical record to their doctors. And so I think that’s fantastic, ’cause, we now get that information real time and we can change our clinical management, maybe bring that patient in sooner, maybe do a bone marrow earlier. We never would’ve identified that if it weren’t for those kind of digital engagements, so I think it’s a really exciting time. And I think we’re going to see more and more of these new platforms and ways for, different EMRs and smartphones to be communicating back and forth between patients and providers. 


Share Your Feedback:

Create your own user feedback survey

Pancreatic Cancer Patient Profile: Marissa Smith

Marissa Smith’s pancreatic cancer journey is anything but typical. For starters, she was 38 years old and working as a neonatal intensive care unit (NICU) nurse when she was diagnosed. She then found out that her cancer involved a neuroendocrine tumor on her pancreas, which is unusual when adenocarcinoma is more common with the pancreas. But even if her story is unusual, Marissa is happy to share her cancer story in case others can benefit from what she learned during her journey.

When Marissa reflects about the beginning of her cancer story, the first symptom she experienced was a sour stomach. “Nothing was helping. I decided to eat, and that made me feel worse. I had pain in my upper abdomen, chills, and sweating. My friends who were nurse practitioners thought that my symptoms sounded like gallstones.” Married with two young children, she and her husband didn’t have any family who lived in their area, so all four of them had to go to the Emergency Room. They were fortunate to have friends who could take their kids to stay with them for the night.  

Marissa’s journey progressed pretty rapidly from there. She received an ultrasound, a CT scan, and then was informed there was a tumor with well-defined edges on her pancreas. The community hospital then sent her to a hospital in the city to get a biopsy of the tumor. A week later, she met with the surgical oncologist to find out the type of tumor and her treatment plan. “It was a golf ball-sized pancreatic neuroendocrine tumor. He said it was very slow-growing and that I’d probably had it for a long period of time. So I might have passed a gallstone, and it’s quite likely that my tumor was found out of sheer luck.” Her doctor suggested the Whipple procedure to remove the head of her pancreas, part of her stomach, part of her small bowel, gallbladder, and bile duct. She also received a PET scan prior to surgery to confirm there weren’t any additional tumors. 

Following Marissa’s surgery, her recovery also wasn’t typical. “I had what we call ‘nurse curse,’ which is every complication that’s imaginable. My stomach was getting very bloated, and I was in pain. Pancreatic fluid was leaking into my abdomen.” She had multiple scans and tests and two procedures where they removed the fluid from her abdomen and then analyzed the fluid. Her hemoglobin level dropped, her care team had to reinstall a tube, and she experienced a gastrointestinal (GI) bleed. After the GI bleed, Marissa received a blood transfusion, and her team later informed her that they almost had to put her in the intensive care unit. “Then when I was eating after I got home, and my nurse practitioner friend could see that my food was coming back out of my drain that they put in. The connection between the stomach and my small bowel was leaking.” Her care team wanted to pull her drain out and send her home, but Marissa insisted on staying for observation for 24 hours with all the complications that she’d already experienced.

Reflecting back on her recovery, Marissa says, “I feel I was fortunate to be in good physical condition just prior to my diagnosis. I lost a lot of muscle mass while I was in the hospital, but I would have had a more difficult time if I had been in worse physical condition before my diagnosis.” 

Marissa got involved with patient advocacy groups after she completed treatment and returned to work. She didn’t do online research after her diagnosis, since her doctor was pretty straightforward with her treatment plan. The COVID-19 pandemic began right after she returned to work, so unfortunately there were no in-person support groups.  

Throughout the process, there were many lessons learned that she wants to share. “Educating yourself is so important. Trust your doctors. Understand what they’re saying or ask questions if you don’t understand. I think your outlook is very important. Understand what your goals are for your life and how you want to live your life.” Patients and their loved ones need to weigh the different factors and goals for during and after treatment. Some patients might choose quality over quantity in their cancer journey, and it’s a personal decision for each person.

Marissa was in awe of her husband and kids. “My kids have been amazing. My team thought I’d be in the hospital for a week for treatment, but it ended up being a month. I went in before Thanksgiving and didn’t come home until just before Christmas.” She returned to work in February, and then the COVID-19 pandemic started. “Our kids were in preschool and 1st grade at that time. That was a horrible year for everyone, but our kids were just incredible. My family is awesome.” At the time, Marissa was in a doctoral program, working a weekend night shift, and hybrid homeschooling our kids. In early 2021, she took a leave of absence from school, went down to two 12-hour night shifts, and was with their kids for their remote school time in the hybrid model. “I ended up working as a substitute nurse in our school district when we switched back to full in-person learning, and I’m now working as a nurse in our home district with our oldest child in my building. I love it, but I took a 50 percent pay cut moving from the hospital to a public school, but my work-life balance is worth it.” She and her family especially enjoy hiking and the outdoors at Adirondack State Park and Lake Placid. They’ve simplified their work lives to enjoy more time with their kids.

Marissa has some other advice for patients and loved ones, “I know it’s hard for some people to ask for help, but ask for help when you need it.” Her family had a meal train that was delivered to a cooler on their front porch so that friends could leave food without intruding at all. Friends took their kids to their activities. Marissa saw a therapist and is still going to process all her feelings about her cancer experience.

Even though going through cancer was difficult, Marissa is so grateful for her family and friends who supported her through everything. She also stresses the importance of self-advocacy. “It’s your body, and you want to make sure you understand what the specialists are telling you. Make sure that you’re making an educated decision for yourself and that you have all the information you need to make the right decision for you and your family.”

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

Transcript: 

Anthony: 

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. 

Niki: 

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. 

Anthony: 

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

Niki: 

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. 

Anthony: 

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? 

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.  

Anthony: 

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? 

Niki: 

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. 

Anthony: 

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. 

Niki: 

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! 

Anthony: 

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

Transcript: 

Anthony: 

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. 

Jane: 

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?  

Niki: 

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.  

Jane: 

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?   

Niki: 

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. 

Jane: 

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.  

Niki: 

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

Anthony: 

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.  

Jane: 

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.  

Niki: 

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. 

Jane: 

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

Anthony: 

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

Transcript: 

Niki: 

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

Anthony: 

Thanks for joining us!  

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

Niki:  

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.   

Anthony:  

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.  

Niki:  

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. 

Anthony: 

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.  

Niki: 

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.  

Anthony: 

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. 

Niki: 

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.  

Anthony: 

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.  

Niki: 

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

Anthony: 

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.   

Niki: 

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.  

Anthony: 

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?  

Niki: 

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. 

Anthony: 

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?  

Niki: 

  • 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. 

Anthony: 

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

Transcript: 

Anthony: 

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

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.  

Anthony: 

Niki, what is a clinical trial exactly? 

Niki: 

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. 

Anthony: 

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? 

Niki: 

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.  

Anthony: 

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? 

Niki: 

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. 

Anthony: 

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? 

Niki:  

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. 

Anthony: 

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?  

Niki:  

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.  

Anthony: 

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

Niki: 

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.  

Anthony: 

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

Niki:  

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. 

Anthony:  

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. 

Niki: 

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

Transcript: 

Niki: 

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.   

Anthony: 

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.  

Niki: 

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. 

Anthony: 

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.​ 

Niki: 

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. 

Anthony: 

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. 

#patientchat Highlights – Self-Advocacy and Self-Education

Last week we hosted a “Self-Advocacy and Self-Education” Empowered #patientchat on Twitter. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Can you recall a time where advocating for yourself improved your care?

Tweet from Alan Brewington


How can you become an effective self-advocate?

 


Full Transcript

30-Year Acute Myeloid Leukemia Survivor Shares His Journey

30-Year Acute Myeloid Leukemia Survivor Shares His Journey from Patient Empowerment Network on Vimeo.

What might acute myeloid leukemia (AML) patients experience for symptoms, treatment, and coping with AML? AML patient and Empowerment Lead Art Flatau shares the experience of his AML journey from diagnosis, through treatment and AML survival, and advancements in AML treatments.

Art also shares his empowerment advice for patients and care partners to ensure optimal care and how he has found a sense of purpose in patient advocacy efforts.

See More from [ACT]IVATED AML

Related Resources:

Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

How an AML Survivor’s Resilience Saved Her Life

How an AML Survivor’s Resilience Saved Her Life 

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 


Transcript:

My name is Art, and I live in Austin, Texas. In 1992, I was 31 and married with two young children. I was in graduate school and working full-time. For a couple weeks, I had been feeling tired and had been running a low-grade fever. I also had a lot of bruises, probably because I was playing rugby at the time. I thought the fatigue was because I was overworked and getting  too little sleep.

On Saturday, I had a rugby game but was too tired to play more than a few minutes. The next day, I was too tired to do much. My wife and I decided that I would go to the doctor on Monday. 

Monday morning, I woke, and there was blood on my pillow as my gums were bleeding. My wife wanted to take me to the ER, but I convinced her to just call our doctor. I went to the doctor later that morning. She noted my symptoms, did a quick exam, and sent me for blood work. After lunch, she called and said I needed to go to the hospital and see a hematologist. I knew I was in trouble.

We talked to the doctor and he said, “We have to see what kind of leukemia you have.” What a shock.  I knew that I was sick with something I had not had before. The fact that it was cancer was a shock. I didn’t know that there were different types of leukemia but soon found out that I had acute myeloid leukemia (AML).

That evening, I received platelets and red blood transfusions. The next morning, I had a bone marrow biopsy, more platelets, and surgery to put in a central line. That afternoon, less than 24 hours after hearing the word leukemia in reference to me, I started chemotherapy. This was all overwhelming. We had no way to understand what our options were or to get a second opinion.

Three-and-a-half weeks later, I got out of the hospital with no hair, 25 pounds lighter, a lot weaker but alive. I had more chemotherapy in the next few weeks and more hospitalizations. A few months later, I was finished with chemo. I regained some strength, regrew my hair, and tried to get my life back to normal.

In early 1993, about 9 months after being diagnosed, we got another shock, I had relapsed. I needed to have a bone marrow transplant. Although we had a little time, a few days to figure out where to go for a transplant, we were again struggling to understand the process. We were also struggling to figure out how to move to Dallas for three more months for the transplant. The transplant was a long grind, a month or so in the hospital, a couple of months of going to the outpatient clinic two to three times a week, but we made it through. 

Now, 30 years later, I’m still around. My children graduated from high school, college, and graduate school and have successful careers. My wife and I are empty-nesters.  I am still working but hoping to retire in a few years. Although I consider myself very lucky to have survived and have had relatively few side effects, I do have some side effects to deal with, including low testosterone.

Some things that I’ve learned during my AML journey include: 

  • AML is a rare disease: The good news is that over the last several years a lot of new treatments have been discovered for AML. These new treatments are leading to more people surviving AML. However, these new treatments are evolving rapidly. It is important to find a cancer center and doctors who treat a lot of patients with leukemia. 
  • Consider volunteering: Advocacy work is an excellent way to help yourself and to support other patients and continued research efforts.
  • If something doesn’t feel right with your health, advocate for yourself and ask for further testing.

These actions (for me) are key to staying on my path to empowerment.

Share Your Feedback About [ACT]IVATED AML

#patientchat Highlights – Patient Advocacy: Boosting Online Presence

Last week we hosted a “Patient Advocacy: Boosting Online Presence” Empowered #patientchat on Twitter with special guest Marie Ennis-O’Connor (@JBBC). Take a look at the top tweets and full transcript from the chat.

Top Tweets

What are the benefits and/or disadvantages of taking your patient advocacy to online communities/platforms?

 


What are your go-to tips for starting on social media whether it’s starting a blog or just trying to find community?


Full Transcript

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!

January

Set SMART Social Media Goals

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

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

Here’s how to make a goal SMART:

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

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

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

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

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

February

Perfect Your Social Profiles

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

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

March

Conduct a Social Media Audit

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

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

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

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

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

April

Conduct a Content Audit

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

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

 Here are the steps to conduct a content audit:

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

May

Create a Content Calendar

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

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

June

Repurpose Your Content

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

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

Here are a few ways to repurpose content:

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

July

Create Visual Impact

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

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

These are a few ideas to get you started:

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

For more tips read: 

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

August

Host a Live Virtual Event

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

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

Tips for hosting a successful virtual event:

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

September

Build Your Authority on LinkedIn

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

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

You can learn more here:

Patient Advocacy: How To Optimize Your LinkedIn Profile

Patient Advocacy: How To Boost Your Visibility on LinkedIn

October

Increase Twitter Engagement

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

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

Follow these steps to get the most out of Twitter:

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

More tips can be found here:

Patient Advocacy: How To Increase Twitter Engagement

November

Try Some New Tools

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

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

Check out the list at:

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

December

Evaluate Your Progress

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

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

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

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

Here’s to your social media success!

Three Ways Patients Can Access Clinical Trials

What are some ways that cancer patients can access clinical trials? In the “How Can Clinical Trials Be Accessed?” program, expert Dr. Seth Pollack from Robert H. Lurie Comprehensive Cancer Center and cancer survivor and patient advocate Sujata Dutta share three ways cancer patients can access clinical trials and advice to patients about clinical trials.

1.Talk to Your Doctor or Healthcare Provider

If you or your loved one would like to learn about available clinical trials, ask your doctor or other healthcare provider. They can find clinical trial information for you, or they can check with a specialist who might have clinical trial information readily available about your specific type of cancer.

2. Get a Second Opinion

If you or your loved one’s doctor does not find any clinical trials or if you want to find some additional options, getting a second opinion could help with locating clinical trial options. If you can schedule a second opinion consult at an academic medical center, you are more likely to find some clinical trial options. Academic medical centers are often connected to research universities that carry out clinical trials and research studies.

 3. Check Reliable Patient Advocacy Websites

Cancer patients and their loved ones can also reliable patient advocacy sites for information about clinical trials. In addition to the Patient Empowerment Network (PEN) website, try resources like the American Cancer Society and The Leukemia & Lymphoma Society (LLS) websites. The National Institutes of Health also maintains a large database of clinical trial options on the ClinicalTrials.gov website.

By taking advantage of clinical trial opportunities, cancer patients can access tomorrow’s medicine today, receive closer monitoring of their cancer, and help improve and refine treatments for future treatments. If you’d like to learn more about clinical trials, check out our Are Clinical Trials Safe? program.

Thriving With an MPN | Tips for Managing Worry and Anxiety

Thriving With an MPN | Tips for Managing Worry and Anxiety  from Patient Empowerment Network on Vimeo.

Dr. Joseph Scandura explains the role of shared decision-making when deciding on an MPN treatment, and why it’s so important for patients to take an active role in their care.

Dr. Joseph Scandura is an Associate Professor of Medicine and Scientific Director of the Silver MPN Center at Weill Cornell Medicine. Learn more about Dr. Scandura.

 

Related Programs:

 
Finding an MPN Treatment Approach That Is Right for You

Finding an MPN Treatment Approach That Is Right for You

How to Access Financial Support for MPN Patients

How to Access Financial Support for MPN Patients

Advice for Choosing MPN Therapy: What’s Right for You?

Advice for Choosing MPN Therapy: What’s Right for You?


Transcript:

Katherine Banwell:

Can you talk about shared decision-making? Why is it so important for patients to work closely with their healthcare team on choosing a therapy? 

Dr. Scandura:

Because these are therapies that last for a long time. And, hopefully, the patients and the relationship last for a long time. And so, I think that everybody has to be comfortable with the decision about a therapy. And my personal goal is to try to make sure that everybody understands the rationale for a therapy, the potential ups and downs with the therapy, which every drug has, every approach has, and what I’m kind of watching and monitoring. I’m a very – I think that communication relieves a lot of anxiety. I think that the unknown is far scarier than the known, even if it’s not perfect. And so, I think shared decision-making has a role in relieving some of the scariness of unknown.  

If we’re discussing to come to a decision, that means that my job is to give you the knowledge that I have so that you can tell me the knowledge about you and what you’re feeling and what you want back. And that back and forth is what helps me do a better job of taking care of the patient and helps the patient understand what’s going on and relieve some of the stress of the unknown. So, I think it’s a very synergistic approach. I don’t think I could practice medicine in another way.  

Katherine:

Managing the worry associated with a diagnosis or concerns even about progression can lead to a lot of anxiety and fear amongst patients. Why is it important for them to share what they’re feeling with their healthcare team? 

Dr. Scandura:

I would say this. If our goals are to have people – I mean, this is what I say to patients – I want you to think about this disease when you’re here. And, then, when you’re not here, my goal is to have you not thinking about this disease because you’re feeling okay and you’re comfortable and confident in what’s going on.  

So, I want to make it a clinic visit disease. That’s not always possible. But, for many patients, it is. I don’t want somebody to become – to start thinking like a sick person when they’re not. I don’t want the diagnosis to be the disease, right? I want the person if they’re feeling well, to recognize that. Live your life; move on with things. But, at the same time, these kinds of diagnoses are scary.  

Katherine:

Yeah. 

Dr. Scandura:

And so, it is normal with a new diagnosis or a change in the diagnosis to go through a period of time where you have to adjust. And so, that’s normal, and you have to work your way through it. Some people want to work that all out internally, and that’s good to a certain extent as long as they have good supports at home. But I often want to know how they’re doing, how they’re working through that so I can get a gauge of how it’s affecting their life and the duration where this adjustment is going on.  

So, somebody who’s still adjusting to a new diagnosis two years after the diagnosis, and they’re otherwise clinically well, that’s getting into the range where it’s not normal. You might need additional help. You might need counseling. And, in some patients, that might include some medications for a short period of time. The goal is to have the disease affecting you only in so far as it’s affecting you, not the idea of the disease. 

So, that’s a – again, it’s a conversation. There are lots of resources. People, being individuals, deal with things in their own way, and I just try to help understand with them how it’s affecting their life. And, if it seems to be more than I would expect, I’ll tell them that.  

And then we can discuss that. It doesn’t mean we have to do something today, but I will tell them, “I think this is maybe a little bit more. Why are you so worried? I think you’re doing great.” 

Katherine:

Yeah. Yeah. Can a social worker or somebody else on the healthcare team help with these emotional needs that patients have? 

Dr. Scandura:

Absolutely. We have great social workers. I tap into them all the time. We also have a group of psychiatrists who are really interested in kind of psychiatry that’s related to oncology and the diagnoses and how it impacts care. I mean, this is New York City, so everybody has a therapist. But a lot of patients have preexisting connections to healthcare providers or support systems. I think, for some patients, groups are helpful.