Tag Archive for: cancer patients

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?

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Why is it important to empower patients? Expert Dr. Cynthia Thomson from the University of Arizona discusses her approach to patient empowerment, how patient goals can vary, and her perspective on supporting patient lifestyle changes. 

 

 

Related Resources:

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?Dr. Akriti Jain: Why Is It Important for You to Empower Patients? Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

 Kimberly Smith: Why Is It Important for You to Empower Patients?

Kimberly Smith: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Cynthia Thomson:

Cancer patients are amazing individuals. They really are committed to their health and well-being, and they’re also committed to the health and well-being of so many around them. So I empower patients by really helping them to think internally about what it is they want to accomplish in terms of lifestyle, what it is that really is important to them. Is it getting down on the floor and playing with their grandchild? Is it being able to have regular bowel movements every day? Is it to handle all these symptoms, maybe long-term fatigue or whatever, and really try to meet them where they are so that they really can achieve the goals that are important to them, not what’s important to me.

And I think that as I’ve worked with patients over decades, what I realize is that when you start where they are and support the patient along the way, they will make positive change. A lot of people will say, oh, no one will change their diet.

People aren’t ever going to eat healthy. Why do you worry about that? And I say, well you know, if that were the case, I think I would have quit doing this a long time ago. I would have realized that. But the opposite is true. People are looking for support, for information, for that opportunity to empower themselves to be healthier. They want to be healthier. It’s just that sometimes they need some help along the way to figure out what it is they need to achieve that goal.

RESTORE | Supportive Care, Exercise, and Nutrition In Cancer Care Resource Guide

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How Important Is Calorie Intake During Cancer Treatment?

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Registered dietitian and oncology nutritionist Julie Lanford discusses the impact of calorie intake during cancer treatment, a simple calculation to use for caloric intake, and nutrition advice for common dietary needs for boosting during treatment.

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Related Resources:

How Much Protein Should I Consume While Undergoing Treatment?

How Much Protein Should I Consume While Undergoing Treatment?

How Is Hydration Managed During Cancer Treatment?

How Is Hydration Managed During Cancer Treatment?

 How Can I Stimulate My Appetite During Cancer Treatment?

How Can I Stimulate My Appetite During Cancer Treatment?

Transcript:

Lisa Hatfield:

Nutrition plays a crucial role in supporting the body during cancer treatment. Proper nutrition can help manage side effects and maintain strength and energy. What should my caloric intake look like? I’m diving deep into this topic as part of the Patient Empowerment Network RESTORE program to uncover how best patients can best support our bodies through nutrition during treatment.

Julie, how can patients accurately determine their specific caloric needs during cancer treatment considering the increased energy demands and perhaps the patient’s existing treatment plan?  

Julie Lanford:

Well, calculating caloric needs is not an exact science. So as a dietitian, we were trained in this, but even being trained, each person is very different. Treatment regimens are different, and the foods they like are different. So, we often don’t actually calculate someone’s needs, unless there is some kind of problem going on.

So typically the sign to that would be unintentional weight loss either before a diagnosis or after diagnosis and because of treatment. So if people start with losing weight and feeling like they can’t quite keep it stable, that’s when we will go through these calculations.

And someone’s medical team can do this for them, but it’s also a pretty simple sort of range that you can come up with for yourself just to see how you’re doing. So we always calculate things for whatever reason in kilograms, per calorie per kilogram. So if anybody in the audience is wanting to try to figure out some kind of range for what would help them maintain their current weight, they can take their pounds, their body weight in pounds divided by 2.2, and that will give them kilograms. And then what we use for calculations, it can be pretty broad.

So, but let’s just say in general, I might calculate for somebody a range between 25 and 35 calories per kilogram. And that is, it might seem like a lot for some people. Some people might not be familiar with how many calories are in different things. It’s really mostly meaningful if you’re somebody who’s not eating well, and you’re taking a lot of supplement drinks or things like that, that have the calories listed on them. Of course, it’s easier to figure it out that way.

I often use a calorie range to help people like that figure out, well, how many, supplement drinks like Ensure or BOOST or Carnation Instant Breakfast might you need to drink in a day if you’re not able to eat in order to help maintain your weight. So it can be helpful to have that range, but it’s not always easy for patients to figure out how many calories they’re taking in. And that’s just a general guide.

Some people’s treatment regimens or types of cancer will actually put them in more of a hypermetabolic state. And we may even estimate up to 40 calories per kilogram. And then if somebody is a small individual, not very active, and they’re not in a hypermetabolic state, even down to 20 might be something we work with. So it is quite a range, but I do think for some people it’s helpful to really compare those numbers.

Lisa Hatfield:

Julie, what are some practical tips for incorporating high-calorie, nutrient-dense foods into my diet, especially when I’m experiencing a lack of appetite or nausea? 

Julie Lanford:

I’m always encouraging people to just make sure if they are nauseated to the point where it’s affecting their intake of food, then they need to be sure they’re taking nausea medicine. Whatever it is, if it’s a once a day, or the sort of quick-acting nausea medicine, or both, and making sure to take those 30 minutes before they plan to eat. And that way, once they approach the table, the nausea’s sort of settled down, and it’s easier to take those foods in.

The last thing we want is for somebody to not take their nausea medicine, then get to the table, then the smells or the looks of the foods make, they feel nauseated, they can’t eat it, then they take their nausea medicine, but then it’s like another 30 to 45 minutes before it’s kicked in, and now you’ve missed a window of opportunity to put those calories in.

So that’s your first, and I think most important when it comes to nausea. And then the second thing actually ties in very well with the poor appetite challenges, is that you just want to maximize the volume of the food you’re eating. So you may not be able to eat as much as you normally do, but if you can make those meals or snacks as calorie-dense as possible, then that way even if you eat less foods, you’re getting as many calories. And the most dense version of calories is actually fat. So as long as you’ve got  your nausea under control, and your digestive system is basically kind of working okay, you can get more calories per volume by having higher fat foods. So that’s why we’re always telling people choose whole milk, choose the highest fat cheeses, peanut butter, which is a good source of healthy types of fats, heart-healthy fats, avocados.

Anytime you can include those types of things into the foods that you know you like, you’re going to be able to boost their calorie content. Other people find that actually drinking foods or calories is easier than eating them. If you don’t have much appetite, it somehow just feels like you’re eating less if you’re drinking it through a straw.  So making things like smoothies, or cream soups or anything that you can think that you’ll be able to swallow.So even if it’s that you’re drinking chocolate milkshakes all day long, that is going to be better for you than not having enough to eat. Because if your body does not have the calories and the protein to sort of recover from the treatments and the challenges that you’re facing, there’s really not much no tools your body has to help with that. So I always say eating something is better than eating nothing. So don’t take any foods off the table. If you have a wide variety of choices, given your appetite challenges, of course, we want people to consume lots of nutritious, healthy, or traditionally healthy foods.

But if you can’t do that, any food is better than no food. And that’s kind of the bottom line. And remembering that the higher fat versions of things are likely to have higher calories. If you’re choosing a supplement drink, I would look at the calories and the protein to make sure and, it’s going to be higher calorie if it’s using things like real sugar rather than artificial sweeteners. So some of those drinks are kind of tailoring to the people who want to do more keto-type diet for people who are in cancer treatment and just need more calories. You need the drinks with the highest calorie content. So I would not be using those. We want the sugar that will help to add more calories into it. 

Lisa Hatfield:

Okay, thank you. Julie, how often should patients reassess their caloric and protein intake with their healthcare team? And what signs should prompt them to seek adjustments to their nutritional plan? And are there any tools that patients might be able to use for screening and monitoring nutritional intake during cancer treatment? 

Julie Lanford:

So there are some screening tools that treatment centers will often be using. There’s like a three question malnutrition screening tool that a lot of cancer centers have integrated, and they would be using that pretty regularly, maybe not every week, but a few times throughout treatment. But generally, the things that they’re asking on that are things that any patient should, I think, be monitoring for self-monitoring or caregivers monitoring for them, which is just what is your weight status compared to what your usual weight is. And I like to compare to someone’s usual weight, as an adult and before any inkling of cancer came around. So if somebody lost weight, significant amounts of weight before diagnosis, I’m not looking at their usual weight as at diagnosis, I’m looking at their usual weight going back. And so that’s one thing is just change in weight.

If your weight is changing, that is a sign that your nutrition strategy might need a little tweaking. If your intake is not very good, that’s another sign. So those are kind of the key things is just are you able to eat? And are you maintaining your weight? Usually people are getting weighed once a week if they’re coming in for treatments regularly. Now, if somebody is not coming in very often, you probably will need to monitor your weight at home. And yes, you need to advocate for yourself in the doctor’s office, because sometimes they just don’t pick up on those changes or they don’t see them as particularly important.

So I would say that you are somebody as a patient or a caregiver that needs to kind of bring up that conversation. If you have noted a drop, and then it some drops some more, if you’re going down and up and down and up and generally staying the same, that’s okay. But if we’re seeing drops and drops and drops, even if it’s just two pounds here, two pounds there, but you’re not rebounding, then that to me is a sign you need to make a change with your nutrition strategy.

Lisa Hatfield:

Okay, thank you. And are there any tools that patients can use to monitor that? Or do you recommend just basically using the scale and identifying if there’s weight loss and notifying their health care team? Is that the best way to monitor?  

Julie Lanford:

Mainly yes, the scale is the easiest. You can do fancy things like body composition analysis, which honestly, some of those that they’ll sell to you at home probably aren’t very accurate. Perhaps they might be accurate, if you’re always comparing to yourself or if you do any workouts in the gym, and you notice that you’re just not able to do as much, but there’s so many things that impact your strength, given that you’re under cancer treatment, it’s really hard to tell. So weight is kind of the key thing. If your clothes fit differently, sometimes that can also be a sign of body composition changes, or you may notice that your body composition is changing. I would say if your body composition is changing, that also may tip you to think that your sort of exercise approach may need to be adjusted as well.

That’s the pairing of nutrition and exercise is that if your weight staying stable, but your body composition is changing, or you’ve noticed muscle loss, either through strength, or just by looking at how your body looks, you can eat enough protein, but that’s not going to build muscle, what builds muscle is using your muscles. So it needs that combination of both being physically active and perhaps using a trainer or somebody who can help you focus on different areas where you’ve noticed muscle loss, and also making sure to provide your body with those nutrients that need to build the muscles.

Lisa Hatfield:

Okay, thank you. You heard it here directly from the experts. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield.

RESTORE | Nutrition During Cancer Treatment Resource Guide

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RESTORE | Psychosocial Challenges During Cancer Treatment and Nutritional Considerations Resource Guide

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PRESS RELEASE: Patient Empowerment Network Joins the National Health Council

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A New Chapter in Patient Advocacy

We are thrilled to announce that Patient Empowerment Network (PEN) has become a member of the National Health Council (NHC), a leading organization dedicated to providing a united voice for people with chronic diseases and disabilities.

This partnership marks a significant milestone in our mission to empower patients and amplify their voices in healthcare. By joining the NHC, we are aligning ourselves with a diverse community of over 160 national health-related organizations and businesses, all working towards improving health outcomes for millions of Americans.

Randy Rutta, Chief Executive Officer of the National Health Council, welcomed our organization, stating: “The National Health Council welcomes the Patient Empowerment Network (PEN) into our diverse community of members. PEN personifies the NHC motto of Putting Patients First™ and will bring a valuable perspective from the cancer community.”

Tracy Rode, Chief Executive Officer of Patient Empowerment Network, expressed enthusiasm about the new partnership: “Joining the National Health Council is a significant step forward in our mission to empower patients, their care partners, and healthcare providers. We are excited to work alongside other leading organizations to drive meaningful change in healthcare and improve patient outcomes across the country.”

This collaboration will enable us to:

  • Expand our reach and impact in patient advocacy
  • Contribute to shaping patient-centered health policies
  • Share best practices and innovative approaches in patient empowerment
  • Collaborate on initiatives that promote access to quality, affordable healthcare

As we embark on this new chapter, we remain committed to our core values of integrity, collaboration, and patient-centricity. We look forward to working alongside the NHC and its members to drive positive change in healthcare and improve the lives of those living with chronic diseases and disabilities.

Stay tuned for updates on our collaborative efforts and the exciting initiatives that will stem from this partnership. Together, we can create a healthcare system that truly puts patients first.

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RESTORE | Embracing Whole-Person Care Resource Guide

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

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

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

PROMS – Giving Cancer Patients a Voice

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

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

Challenges and Considerations in Implementing PROMs

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

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

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

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

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

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

How Can Patient Advocates Overcome These Challenges? 

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

Here are some specific actions you can take: 

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

The Future of PROMs in Cancer Care

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

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

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

Food Recommendations for AML Patients to Eat or Avoid Post Transplant with Know AML

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Editor’s Note: This was originally published by Know AML on April 20, 2022 here.

 

For the AML World Awareness Day, Know AML was pleased to speak with Katie Walker, King’s College Hospital NHS Foundation Trust, London, UK. They asked, “In your clinic, what foods do you recommend patients with acute myeloid leukemia should eat or avoid post transplant?”

She begins by prefacing the goals of her food recommendations, to help patients regain or stabilize their weight after a bone marrow transplant and gain strength. Walker outlines the different food groups, and highlights the importance of increased protein and its various sources. Finally, she discusses foods to omit such as unpasteurized dairy for those with a low neutrophil count.

Disclaimer: This video is for informational or educational purposes only, and does not substitute professional medical advice or consultations with healthcare professionals.

Maintaining a Health Diet During Cancer Treatment with Know AML

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Editor’s Note: This was originally published by Know AML on April 20, 2022 here.

 
 

 

For the AML World Awareness Day, Know AML was pleased to speak with Katie Walker, King’s College Hospital NHS Foundation Trust, London, UK. They asked, “Why is it important to maintain a healthy diet during treatment?”

Walker begins by explaining the content of a balanced diet in the context of different food groups. She discusses meat and dairy alternatives, as well as specific recommendations within food groups such as opting for wholemeal carbohydrates to increase fiber. Finally, she touches on supplements, weight maintenance, and reduction of appetite.

Disclaimer: This video is for informational or educational purposes only, and does not substitute professional medical advice or consultations with healthcare professionals.

Nutrition Essentials for Cancer Patients: Optimizing Health During and After Treatment with Savor Health® and Ina®

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Proper nutrition plays a pivotal role in supporting cancer patients both during and after treatment. Throughout treatment, understanding which foods to eat/avoid, managing symptoms, and preventing unintended weight loss are paramount. During treatment, patients may experience low blood counts. Food safety precautions can protect against infection from bacteria on food. While adhering to this regimen, wash all fruits and vegetables well and avoid deli meats and unpasteurized dairy foods. Also, cook all meat, fish, and eggs thoroughly. 

Treatment frequently accompanies adverse side effects like fatigue, loss of appetite, nausea, and taste alterations. Mitigating these symptoms can be achieved through consuming small, frequent meals, prioritizing eating during periods of feeling well, and incorporating ginger tea to alleviate nausea. For those experiencing symptoms like vomiting, nausea or diarrhea, maintaining hydration levels is particularly important, alongside consuming easy to digest foods like plain toast, yogurt, or bananas. For taste changes, altering the flavors of food by using different fats, acids, salts or sweets can help. Avoid metal utensils if you experience a metallic taste. 

After-treatment, maintaining a balanced diet remains crucial. Reducing consumption of red meat, alcohol, and added sugars is advisable, as well as avoiding processed meats. Substituting with plant-based proteins such as nuts, seeds, whole soy foods, beans and legumes can provide plant-based protein and fiber, which lower cancer risk. Hydration and regular physical activity, aiming for at least 30 minutes of moderate exercise daily, are vital components of the survivorship phase. Monitoring symptoms and maintaining open communication with healthcare providers ensures ongoing support and adjustments as needed. 

Savor Health® and Patient Empowerment Network partner to offer access to Ina®, a Dietitian-on-Demand. Ina® provides personalized clinically and contextually appropriate nutrition and symptom management interventions 24/7 “on demand” via SMS text. This helps patients with complex chronic conditions stay on treatment, prevent and manage side effects, and optimize treatment outcomes. Text Ina® from your cell phone and she’ll respond with personalized nutrition tips, recipes and answers to your questions—no phone calls or appointments necessary. It is safe (HIPPA compliant), free and accessible 24/7 “on demand” through our partnership. Register for Ina® here: https://adpen.savorhealth.com/portal/ 

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

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

What is ChatGPT

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

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

Are there Alternatives to ChatGPT?

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

10 Ways To Use ChatGPT to Cope with Cancer

1. Explaining Medical Terms

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

2. Detailing Treatment Options

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

3. Treatment Side Effect Management

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

4. Medication Questions

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

5. Managing Stress and Anxiety

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

6. Finding Resources and Support Groups

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

7. Exercise Recommendations

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

8. Nutritional Advice

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

9. Preparing for Doctor Visits

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

10. Symptom Tracking and Management

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

How to Ask Clear Questions to ChatGPT

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

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

Using AI with Discernment: A Word of Caution

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

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

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

[3] Introducing ChatGPT | OpenAI

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

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

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

DOI: 10.2196/47479

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

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

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

January: Define Your Vision

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

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

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

February: Build Partnerships

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

March: Capitalize on Awareness Days

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

April: Compile a Glossary of Medical Terms

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

May: Optimize Your Social Profiles

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

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

June: Conduct A Content Audit

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

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

July:  Mid-Year Review and Adjustments

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

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

August:  Hone Your Writing Skills

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

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

September: Perfect Your Presentation Skills

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

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

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

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

October: Try Some New Tools

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

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

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

November: Express Gratitude

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

Here are some suggested ways to show your appreciation:

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

December: Reflect and Plan for the Future

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

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

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

Patient Empowerment Network joins CancerX Initiative

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FOR IMMEDIATE RELEASE 

November 1, 2023

Patient Empowerment Network joins CancerX Initiative 

BOTHELL, WA. – Patient Empowerment Network (PEN) announced today that they have joined the CancerX Initiative, a public-private partnership announced by The White House as a national accelerator to boost innovation in the fight against cancer as part of the Cancer Moonshot campaign. CancerX’s goal is to reduce cancer deaths by 50 percent by 2047.   

“Key to achieving the goals of the Cancer Moonshot is having each and every cancer patient able to access the information they need to engage in shared decision-making,” said Tracy Rode, Executive Director, Patient Empowerment Network. “We believe Patient Empowerment Network (PEN) is an important addition to CancerX because of our focus on health equity and online literacy. We are proud to offer our expertise and energy to CancerX.” 

CancerX is convened and administered by Moffitt Cancer Center and the Digital Medicine Society (DiMe), alongside the Office for the National Coordinator for Health Information Technology and Office of the Assistant Secretary for Health.  

“Multi-stakeholder collaboration is critical to harness the potential of digital innovation in the fight against cancer, and we’re honored to partner with PEN to achieve the ambitious goals of CancerX,” said Smit Patel, Associate Program Director at Digital Medicine Society (DiMe). “Through this impressive collaboration, we will establish best practices, build capacity, and demonstrate the impact of innovation on the life of every person on a cancer journey.” 

PEN’s mission is to offer trusted information to empower anyone impacted by cancer, toward fulfilling our vision of every cancer patient having the knowledge they need to navigate the complexities of cancer.  

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About Patient Empowerment Network 

Patient Empowerment Network (PEN) is a virtually-based 501(c)(3) non-profit organization trusted by millions of cancer patients and care partners worldwide to achieve improved health literacy, equity, and treatment outcomes at every step of their journey. www.powerfulpatients.org. 

  

Media Contact:    

Emily Reed 

Early Light Public Relations 

Emily@earlylightpr.com