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.
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.
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Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial |
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:
These actions (for me) are key to staying on my path to empowerment.
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.
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!
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.
This month, take some time to review each of your existing social media profiles and ask yourself the following questions:
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
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:
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.
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:
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:
For more tips read:
Patient Advocacy: 6 Tips for Making A Visual Impact on Social Media
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:
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
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:
More tips can be found here:
Patient Advocacy: How To Increase Twitter Engagement
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
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:
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!
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
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.
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.
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.
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 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.
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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.
How Can Patients Navigate Care and Thrive With an MPN? from Patient Empowerment Network on Vimeo.
What does it mean to thrive with an MPN? Dr. Jeanne Palmer, an MPN specialist from the Mayo Clinic, shares advice on navigating MPN care and stresses the importance of communicating openly with your healthcare team.
Dr. Jeanne Palmer is a hematologist specializing in myeloproliferative neoplasms (MPNs) and bone marrow transplant at the Mayo Clinic in Arizona. Dr. Palmer also serves as Director of the Blood and Marrow Transplant Program and is Vice Chair and Section Chief for Hematology. Learn more about Dr. Palmer, here.
Understanding Treatment Options for ET, PV, and Myelofibrosis |
How Should You Participate in MPN Care and Treatment Decisions? |
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Katherine Banwell:
What does it mean to you to thrive with an MPN?
Dr. Jeanne Palmer:
I think living with an MPN can be very difficult. I think there is a number of things. First of all, there’s always the worry of what’s going to happen in the future. Many of these MPNs can start as fairly, for lack of a better term, as benign issues and can convert to something much more serious. So, I think living with that sort of timebomb in the back it can be extremely stressful. So, figuring out how to live with the fact that there is some degree of uncertainty.
I think the other thing is making sure to understand your disease. These are very rare disorders and even if you go to a hematologist-oncologist specialist, a lot of times they don’t have all the information because they don’t see a lot of them every year. So, it’s really important to make sure that above and beyond that you understand what’s going on in your body so that when new things happen, new symptoms happen, you’re able to really address them as opposed to sort of living with something that may make you feel poorly that’s not being addressed.
So, again, I think the biggest piece of this is seeing how do you live with uncertainty and how do you make sure you understand your disease well enough that you know what’s going on in your own body.
Katherine Banwell:
Patients can sometimes feel like they’re bothering their healthcare team with their comments and questions. Why do you think it’s important for patients to speak up when it comes to symptoms and side effects?
Dr. Jeanne Palmer:
Well, there is a lot of things. This is a disease, again, that we can direct our therapy many times towards symptoms, and so when we think about how do I direct my therapy, so how do I treat somebody, symptoms are an incredibly important part of it. And there is nothing worse than having a patient come and see me who I see every six months, because they’ve been pretty stable and they’re like, “Oh, for three months I’ve been feeling awful.” And you’re like, well, “Why didn’t you let me know, we could do something about this?”
So, if there is something that doesn’t feel right, it’s very, very important to talk to your healthcare provider. I would much rather be bothered and handle something earlier on than miss something and really have a lot more catch-up to do afterwards.
The other thing is symptoms may indicate a blood clotting event. We know that patients will have a higher risk of blood clotting. These are extremely important to identify early on because if they go unchecked, they can cause more damage.
Katherine Banwell:
Dr. Palmer, was we close out this conversation I wanted to get your thoughts on where we stand with progress in helping people live longer and truly thrive with MPN. What would you like to leave the audience with?
Dr. Jeanne Palmer:
So, I think that the first thing is make sure you understand your disease. Don’t hesitate to ask for a second opinion. It’s always good to make sure you talk to someone who can really explain so you feel like when you go home you understand what’s going on in your body. Make sure you understand what symptoms to look for, what things to be aware of, because a lot of times people come in and they have no idea that, oh, these symptoms are actually related to their disease.
The other thing to make sure is that you’re very honest with your provider on how you’re feeling. A lot of times people come in and they say, “Oh, how are you feeling?” “I feel fine,” but then they start to ask very specific questions and they’re like, “Oh yeah, I’m really tired, my fatigue is an 8 out of 10,” or something.
So, make sure you’re really honest with your provider. When they ask you how they’re doing, this is not a social visit, this is a visit where they need to know your symptoms, so you don’t need to say I’m fine like you normally would if you were walking down the street.
The next thing is to always make sure to know where there’s clinical trials because we are making enormous great leaps and bounds in this field. It’s a really exciting time for myeloproliferative diseases, and there’s a number of new drugs that are being tested and coming out. So, it’s always important, if the opportunity is available and you can do it, clinical trials are a great way to get treatment.
Plus, you are giving back, because these are things that help us learn whether something works or not. So, you’re not as much a guinea pig, you never get a sugar pill. It’s one of those things will you will always get the treatment you need and then they may add something to it or you may be in the situation where there is no treatment, so they try something.
But clinical trials, I have to emphasize, are a great way to get therapy and really are how we know everything that we know about treatment for these diseases.
Katherine Banwell:
Yeah. It sounds like there’s a lot of progress and hope in the field.
Dr. Jeanne Palmer:
Oh, absolutely.
Why Should Follicular Lymphoma Patients Seek a Second Opinion? from Patient Empowerment Network on Vimeo.
Lymphoma expert Dr. Matthew Matasar encourages patients to take an active role in their care and explains why they should feel comfortable seeking a second opinion.
Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.
See More from The Pro-Active Follicular Lymphoma Patient Toolkit
Why Is It Important for Follicular Lymphoma Patients to Be Empowered? |
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What Is the Patient Role in Follicular Lymphoma Treatment Decisions? |
Katherine Banwell:
What is your advice to patients who may feel like they’re hurting feelings by seeking a specialist or a second opinion? Any advice for self-advocacy?
Dr. Matasar:
I would say there is this. Any doctor who is taking care of you and doesn’t want you to have the best information and the best options is not a very good doctor. This is never about the doctor. It’s not about me. It’s about you. And if a doctor’s ego is getting in the way of a patient getting the best care, the best options, the most modern and up-to-date available information around their illness and around how best to take care of it, that doctor better check themselves.
Similarly, the patient should understand that it’s about you. It’s not about me or your other doctors, or anything. It’s about you getting what you deserve, which is the clearest insight and the most appropriate treatment options available. And you should have no reservations in seeking that out, and honestly most oncologists are happy to have you get a second opinion, because they’ll feel more supported in your care. It’s stressful to be an oncologist sometimes too. And for you to get a second opinion from an expert and the expert says, “You know what? Yeah, your oncologist is spot-on.”
That can be very validating and reassuring. And then, that expert oncologist is a resource to your local oncologist, and they can work together in your care. Everybody works better as a team. It’s just as true for oncologists as for anybody.
Three Key Steps for Newly Diagnosed Follicular Lymphoma Patients from Patient Empowerment Network on Vimeo.
Once a patient has been diagnosed with follicular lymphoma, what’s next? Lymphoma expert Dr. Matthew Matasar shares his expert advice on key next steps for newly diagnosed patients.
Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.
See More from The Pro-Active Follicular Lymphoma Patient Toolkit
Why Should Follicular Lymphoma Patients Seek a Second Opinion? |
What Factors Are Considered When Choosing a Follicular Lymphoma Treatment? |
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Katherine Banwell:
What three key pieces of advice would you have for a patient who has just been diagnosed with follicular lymphoma?
Dr. Matasar:
The first thing I would say is that everybody should have access to a second opinion pathology review.
This is independent of what the doctors are giving you advice in taking care of the illness, but just making sure that the diagnosis itself is correct. We know that the diagnosis of lymphoma is a tricky one for pathologists, particularly if they’re not pathologists that are seeing lymphoma under the microscope every day of the week. And when you go for a second opinion pathology review by having the slides sent to a major academic center, there’s a possibility that the diagnosis will be changed or revised in a way that’s meaningful meaning that it would lead to different recommendations for how to take care of your illness.
The second is that you’re entitled to a second opinion medical review as well and going to see an expert in lymphoma if your first opinion was with a community oncologist or somebody referred by your primary care doctor who may not have singular expertise in these illnesses, can be helpful. It can be reassuring if that doctor says, “You know what? I agree with your local oncologist, and I’m happy to collaborate with their care.”
Or they may say, “You know, we have a different perspective. There’s newer data. There’s newer options. There’s clinical trials. There’s other resources to bring to bear,” and maybe your choices are broader than you may have originally believed.
And the third is just to be that advocate for yourself, to take charge, and to participate in your care. Let your doctors know who you are, how you view things, how you like to receive your healthcare information. Are you a big picture or a detail person, and what are your priorities so that they can best match their recommendations to who you are as an individual, as a person, as a member of a family in the community so that they can give you the most personalized and appropriate recommendations possible.
Katherine Banwell:
Why should patients consider seeing a follicular lymphoma specialist?
Dr. Matasar:
I think that it’s increasingly important when you’re looking at a diagnosis of follicular lymphoma to consider seeking an expert second opinion from a lymphoma specialist. And this is because our understanding of this disease is changing very rapidly. The therapeutic armamentarium is changing very rapidly with new treatments becoming available every year. And sometimes a community oncologist who is required to be expert in many different diseases may not have access to the same body of information or the same insights that somebody who specializes in this disease may have at their fingertips.
Why Should You Consider Seeing a DLBCL Specialist? from Patient Empowerment Network on Vimeo.
Lymphoma expert Dr. Matthew Matasar explains the benefits of seeing a diffuse large B-cell lymphoma (DLBCL) specialist and encourages patients to be partners in their own care.
Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.
See More From The Pro-Active DLBCL Patient Toolkit
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Katherine Banwell:
Why should DLBCL patients consider seeing a specialist? What are the benefits?
Dr. Matasar:
The benefits of a specialist in the treatment of diffuse large B-cell lymphoma is that this field is changing rapidly. Treatments like this R-CHP-pola regimen, we understand that these data are very new reported only months ago but perhaps academic centers may have a greater sophistication or comfort with using these newer data to support the care of our patients.
The second is that there are many important and highly relevant clinical trials that are ongoing as we continue to try to improve outcomes for patients with diffuse large B-cell lymphoma either receiving their first treatment or for those patients who, unfortunately, suffer relapse. Some of these treatments may only be available at academic centers of excellence and understanding that your options for treatment may be different under the care of an expert in this disease is an important thing to consider when trying weigh how best to approach receiving care.
In my previous post, I shared with you tips to optimize your LinkedIn profile. Recall that I recommended LinkedIn as the best social network for enhancing your professional online presence and showcasing your advocacy activities.
If you have put into practice the tips from last month, you should now have a professional-looking profile. So let’s discuss ways you can make your profile more visible on the site.
In essence, you must appear more frequently on LinkedIn, share engaging content, and engage consistently to increase your visibility.
The following are my top recommendations for increasing your activity and visibility on the platform through a daily engagement routine.
Keep active and visible by posting a status update daily and engaging with your connections’ posts and articles in your newsfeed. LinkedIn encourages users to use specific hashtags in their posts and searches. It’s important to find hashtags relevant to your followers’ interests before you start adding them to your LinkedIn posts. It’s a good idea to observe what hashtags others in your advocacy area use on LinkedIn, as well as on other social media platforms such as Twitter and Instagram.
With LinkedIn native video, you can record a video inside the app or upload a pre-made video from your camera roll. This feature is available only on mobile, so download or update the app to make sure you have the latest version.
Tip: Go Live. In the short-term, native video on LinkedIn is still a novelty and presents an opportunity for you to stand out. With live video, you can broadcast content directly to your profile, so you can interact with your audience in real-time, drive deeper engagement, and establish your thought leadership. You will need to switch on Creator mode to be able to record live video. Here’s how to do this
Mentioning a connection encourages engagement with your posts and comments. To mention someone in a post: Type “@” and then begin typing a name in the box.
Pay attention to everyone who takes the time to leave a comment on something that you post. Each time someone likes or comments on your post, their network can see it, thereby increasing the visibility of your post. When people are liking, sharing, and commenting on your posts, this acts as “social proof” to your network and beyond.
Nurture your LinkedIn relationships through regular engagement. LinkedIn will notify you of trigger events (such as when one of your connections starts a new job). Take a moment to reach out to them with a personalized message of support.
Join groups on LinkedIn and start a conversation or comment on what is posted there. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.
What you post on LinkedIn will establish you as a credible authority in your field. The key is to share relevant news, articles, and insights with your connections. Consider the type of content that will be most useful to your followers. As a thought leader, your goal is to consistently share your unique perspective on the most important industry topics.
Finally, be strategic about when you post. As a general rule, LinkedIn users are most active right before and after work (7-8 am and 5-6 pm), as well as during lunchtime. Experiment for yourself. Post at different times and take note of which times your particular audience is most engaged with you.
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
When was the last time you updated your LinkedIn profile? People tend to think of LinkedIn as simply a place to post their resume, but there is so much more to it. The platform is flourishing right now and has released some new features to make it an even more engaging place for users.
With 810 million global users (185 million in the United States), LinkedIn is an excellent way to network with healthcare professionals and disease experts. It can also provide the perfect platform to showcase your advocacy activities. In this post, I’m going to share with you some tips on how to take full advantage of LinkedIn’s potential. I’ll show you how to improve your LinkedIn profile and turn it into the cornerstone of your professional online presence. Whether you’ve been using LinkedIn for a while or are just starting out, optimizing your profile for maximum visibility and engagement is worth the effort.
Before you begin, gather together the following:
Let’s start with the basics. LinkedIn reports that profiles with photos receive 14 times more views than profiles without. Your profile photo is the first thing that people see when they navigate to your account, so make sure that it portrays you in a professional manner. You can upload a jpeg or png image sized between 400 (wide) x 400 (height) pixels (maximum file size is 8MB).
LinkedIn photos are usually cropped just below the shoulders, so choose a photo that won’t require much cropping. On mobile devices, only the center portion of the photo appears, so avoid putting anything important on the outside edges. You can adjust the photo after it has been uploaded by cropping, changing its position and size, and even adding photo filters.
If you have noticed, there is space behind your profile image where you can upload a banner or header image. Consider this your professional billboard. This is an opportunity to increase your LinkedIn visibility and make your profile stand out.
On the desktop version, your profile photo is located about 50 pixels from the left, so move any important information (such as a logo or contact information) out of this area so it won’t be obscured. 1584 pixels wide by 396 pixels high is the recommended image size. Your background image will look blurry or pixelated if it is not high-resolution. Whenever possible, choose an image with a file size as close to the maximum (8 MB) as possible, as larger files tend to look better. Choose photos over images with logos. You can crop, filter, and adjust your photo after you upload it to LinkedIn.
It It is very likely that someone will find your LinkedIn profile first when they google your name. Claim your LinkedIn url (i.e., your LinkedIn address) for the best Google ranking. Your address is unique to you, and if you haven’t customized it, it will likely consist of your first and last name followed by numbers, letters, and dashes; this doesn’t look very professional.
This feature can be found under your profile picture. If it’s not customized, you can do so by clicking on Edit your public profile. If your first and last names are already taken by someone else on LinkedIn, you can add an affiliation or middle initial. After creating your custom URL, you can use it on your business cards, add it to your email signature, and anywhere online you wish to build your personal brand.
The first thing people see on your LinkedIn account is your profile picture, but the first thing they read is your professional headline. Because your headline follows you everywhere on LinkedIn, it is important to make it as compelling as possible. An individual’s profile, for example, will show both their picture and headline.
In addition to being highly visible, your professional headline is also searchable by Google. LinkedIn is like a secret search engine. Google crawls pages and URLs for keywords, and LinkedIn profiles allow users to embed keywords. If you want people to find you on LinkedIn, you’ll want to emphasize the keywords that people search for on the site and that will show up on search results.
Location is one of the top five fields that LinkedIn prioritizes when doing a keyword search. To add your location and industry, open up the Edit Intro window and fill in your location details as prompted.
To add details about your education to your LinkedIn profile, click the + sign in the upper right of the Education section. In the box that appears, enter details about your school, degree, studies, etc.
Provide a list of all the jobs and positions you’ve held and their descriptions. Most of this information can be found in your CV. Emphasize the keywords you want to be known for. One of the most common LinkedIn mistakes is an outdated Experience section. Archive previous experience and make sure all of your current experience is correct.
One of the newest features added by LinkedIn is the ability to add a career break to this section. I really like how LinkedIn frames a career break as a way to add something unique to your skillset. As many of us have breaks in employment due to illness, this is a welcome feature on the platform.
Immediately below your picture, name, location, company and education sections, you have the opportunity to write a summary about yourself. In my experience, many people skip over this section or give it very little attention. This is a big mistake. This section tells the story of what you are passionate about. It makes your profile less about being a resume and more about you. It’s an opportunity to establish your credibility and show some personality. It’s also a great place to include keywords that will help make you more visible in search results. Think of this space as your elevator pitch. Use it to describe the story of what you do and the unique qualities you bring to your work.
Tip: When completing this section, break it up into short paragraphs and make it easy to scan for the reader. It’s important to note that only two lines of text from the Summary show up on your profile before the “see more” link to click. Those two lines need to be compelling enough to get people to click.
Adding skills and expertise to your profile also helps you show up in relevant searches. You can list up to 50 skills with LinkedIn showcasing your top 10 skills based on endorsements so people know where you excel. To add a skill, click the Me icon and select View Profile. Scroll to the Skills & Endorsements section of your profile and click Add a New Skill.
Remember, it’s the top three skills that are immediately visible when people scroll through your profile, so make sure you order your skills the way you want them to appear.
A LinkedIn recommendation is a brief paragraph that someone has written describing their experience of working with you. Get into the habit of asking people if they would be willing to recommend you on LinkedIn after they have thanked you in person or complimented you for work you have done.
Scroll all the way down your profile, and you’ll discover there are sections to add your current and past projects, as well as any honors and awards you’ve received. Be sure to populate these sections to showcase your advocacy activities.
Taking time and care with each of these steps will pay dividends and reward you with increased visibility and enhanced professionalism. Your LinkedIn profile should never be done once and then forgotten. Review it regularly. Remove outdated information, include fresh keywords, add new images, and keep your profile looking current and relevant.
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
Setting CLL Treatment Goals WITH Your Team from Patient Empowerment Network on Vimeo.
What are the goals of CLL treatment? CLL expert Dr. Catherine Coombs explains how goals can vary by patient and discusses the benefits of making decisions with your healthcare team.
Dr. Catherine Coombs is an Assistant Professor of Medicine in the Division of Hematology at The UNC Lineberger Comprehensive Cancer Center. Learn more about Dr. Coombs here.
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Katherine:
Appropriate treatment obviously is part of thriving. Before we get into the specifics of CLL treatment approaches, how would you define treatment goals?
Dr. Coombs:
The first thing to jump into prior to going into treatment goals is asking the question, “Is treatment even needed?” CLL, in contrast to pretty much most other cancers, is not one of the cancers that needs to be treated immediately.
At least in 2022, there’s no proven benefit to early treatment. That is being questioned now that we have drugs that are much better tolerated. There are some nice clinical trials asking that question again, “Is early treatment beneficial?” At least what we know now is that is not the case. As it turns out, probably up to a third of patients with CLL never need treatment in their lifetime. That means that the disease progresses along usually at a slow pace, and individuals die from something else: any number of other potential causes of death.
The other two-thirds plus do need treatment at some point in their lifetime. The goals of treatment kind of depend on the patient. There’s not a one-size-fits-all approach in my view. I think it depends on what is most important to the patient.
I’ll give two drastic examples just to show how goals can be different. CLL often is a disease of older individuals. The average age of diagnosis is usually around 70 or so. But many patients have the disease for a few years, if not longer, prior to needing therapy. So, one example patient could be an 85-year-old individual who has had the disease for a decade and finally needs treatment. The goals of that patient may be to control disease, but he or she may not be worried about going into a deep remission, and may be very, totally willing to be on a drug. And definitely in order to control the disease, alleviate disease-related symptoms, but perhaps not get into a deep remission.
The other patient, just to take it to another far extreme, I work in an academic medical center; I see some very young patients which is not the norm in CLL, but it does happen.
Say it’s a 40-year-old patient. His or her goals may be very different. They may not like the idea of being on an oral therapy indefinitely or until progression. So, the goals for that patient may be different. They may say, “Gosh, I’d like to do something a bit more intense to be able to be off of therapy.”
So, I think in the end there’s no one-size-fits-all approach. It generally, for my clinic, comes down to a discussion with the patient talking about what their goals are: is it more important to be off therapy for some period of time and they’re willing to sacrifice a bit more intensive of a schedule? Or are they more appealing to be on a regimen that they’re on indefinitely provided that it still provides disease control and alleviation of the disease-related symptoms.
Katherine:
What is the patient’s role in setting care goals?
Dr. Coombs:
I think they should have a huge role; it should be a shared decision between the patient and their cancer doctor. I think at least as of now, there’s not one proven best therapy. We have a number of therapies that work extremely well. But they differ quite a bit with respect to the schedule, the possible side effects profile, and sometimes in the cost, depending upon the patient’s insurance.
Knowing that there’s not a superior therapy, I think the best approach would be to discuss all of the therapies that are highly effective, and then compare and contrast what those therapies may look like for the patient and then make a shared decision.
Why Should You See a Waldenström Macroglobulinemia (WM) Specialist? from Patient Empowerment Network on Vimeo.
There are only 1,500 patients diagnosed with Waldenström macroglobulinemia (WM) each year in the United States. WM expert Dr. Shayna Sarosiek explains why patients should consider a consult with a WM specialist and advice for being proactive in their care.
Dr. Shayna Sarosiek is a hematologist and oncologist at the Dana-Farber Cancer Institute where she cares for Waldenström macroglobulinemia (WM) patients at the Bing Center for Waldenstrom’s. Dr. Sarsosiek is also Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Sarosiek, here.
See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit
Expert Advice for Newly Diagnosed Waldenström Macroglobulinemia (WM) Patients |
Waldenström Macroglobulinemia (WM) Treatment: Why Timing Is Essential |
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Katherine:
Why do you think patients should consider seeing a Waldenstrom’s specialist?
Dr. Sarosiek:
So, Waldenstrom’s is a rare disease. There are only about 1,500 patients per year in the United States diagnosed with Waldenstrom’s. And because of that, many providers – whether it’s an internal medicine provider, a surgeon, oncologist – most people don’t have a lot of experience, just because it’s such a low number of patients with the disease.
And so, it’s not possible I think to really ever know everything there is to know about Waldenstrom’s. But that’s especially true when you’re working in the community, and you don’t get an opportunity to see a lot. So, if you have the chance to see a specialist, I think it’s really important. Because as a specialist, we really have the opportunity to get to know all of the data about the disease.
We get to know the nuances of the data. We get to know a lot of different presentations of the disease and have a lot of experience with the unique things that can happen with Waldenstrom’s. So, we’re lucky in that way to really be able to see patients and continuously just be learning more and more so that we can be more helpful to patients.
Katherine:
Right. What is your advice to patients who may feel like they’re hurting feelings by seeking a specialist or seeking a second opinion? Any advice for self-advocacy?
Dr. Sarosiek:
So, I think in general I would hope that most physicians and all physicians would really be open to having their patients get a second opinion. Even as a specialist, we’re really open to that because we can never know everything and so it’s important to get more brains involved at all times, I think is always helpful. So, although it may feel that way sometimes, I think the vast majority of physicians I come in contact with are really more than willing to get help from other people who might have more experience with such a rare disease.
And I think that patients should never be discouraged if they have a physician who’s not quite open to it [00:06:05], because they really – I think the patients are always their best advocate. They know their body the best, they know their symptoms, they know if something’s not right. And so, really pushing to get the right answers for themselves. I think being an advocate for yourself there’s no one who can do that better. So, patients should never be – should never hold back from getting a second opinion.
We have all heard the phrase, “Hindsight is 20/20”. Yes, it can be, if we know to look and be retrospective and heed the lessons learned. However, too many of us don’t take the time to take advantage of hindsight and find ourselves caught over and over in the same tidal pool.
When my husband was diagnosed in 2002 with MGUS, the driving force for me to use as a guide to be proactive in his health as his advocate was the illness and subsequent death of my 5-year-old brother David, who was very rarely spoken of in my family. I always wondered why it was sort of secretive. I remember finding his death certificate in a chest and wondered about him for years until as a teen I asked my mother about him and his illness. You see, I was only 1-year-old when he died, I have no memory of him. What I know was told to me by my mother, many years after his death. He had leukemia, diagnosed when he was 4. At that time, it was a death sentence. He was in “treatment” but it was all experimental at the time. I asked my mother what kind of leukemia he had. She wasn’t sure. She knew she had to give him over 50 pills a day. I asked what they were, but she didn’t know. I couldn’t believe how little she knew about his illness or what was being done to him. I always felt that when hearing her tell me about David that she was guarding herself somehow. He was eventually sent home to die. Hearing the bits and pieces always struck a weird chord with me.
It was only as an adult accompanying my husband on his cancer journey with Myeloma that I began to understand the horrible cost to David and subsequently my parents and older siblings. I was always trying to investigate his illness from afar. So, now the seeds of questions that always remained with me and the illness and death of my husband has led me to where I am now. Those two experiences, especially the journey with my husband made me acutely aware on a daily basis of the urgent need for all patients to be educated in their illness, so they can openly and actively participate in their treatment not only of cancer but their overall health, mentally, physically and financially.
Overcoming barriers of bias both conscious and unconscious are still huge barriers that many patients face. Educating oneself seems to be a huge equalizer. Knowledge gives you the confidence to question, make better decisions, and to benefit from those decisions. It gives you relative peace of mind that the decisions you make are in your best interest and your family.
You may be asking how all of this comes together when in treatment for Myeloma, AML, or quite honestly, any illness. Simply, the more you know about your treatment the better equipped you are to ask the right questions about the cost of treatment, its side effects if you are going to have to take time off from work if there are other anticipated upcoming treatments that you need to prepare for. And, If your treatment is available in town or if you need to find treatment elsewhere. You can ask if there are other treatments available with perhaps less associated costs. You can prepare your personal finances and make sure your insurance coverage is the best it can be. Knowing your full treatment plan can help you gather the financial assistance you will need to help you get and stay on treatment.
There are many resources that you can easily access to educate you on your illness as well as give you information about financial resources for which you may qualify. They include help with travel for medical treatment, co-pay, deductible and premium help, utilities, lodging, and urgent financial help.
Many of the resources available today were not around to help my husband or I had no knowledge they existed and no one to inform us during his cancer journey and certainly not available to my parents with the cancer journey of my young brother in the early ’60s. Education can even be the playing field for many patients.
Becoming knowledgeable about available resources can help you control your stress levels which can benefit your overall health outcomes. And knowing that there are financial resources available to you can help alleviate some of the financial stress that comes with having a very expensive illness.
In one of the few conversations, I had with my mother, I asked how they found out about my brother’s cancer. She said they were told over the phone. The doctor said,” Your son has cancer and is dying”. I can’t imagine living that experience. My mother said she felt hurt and angry for it being so impersonal. She said this was a hurt for which she never forgave herself. This was a time in 1961 when the disparity in healthcare was even more glaring than it is today. My parents didn’t know how or were even encouraged to ask questions to participate in David’s care. David and our family suffered as a result.
I encourage everyone to take advantage of the learning opportunities available to them. Doing so will provide you with the peace of mind that you are getting the best care while managing the cost of your treatment and reducing overall stress to allow you to live your best life.
Diahanna Vallentine, BCPA, Financial Empowerment Lead
In 2002 Diahanna and her husband received the news that her husband had MGUS, a precursor to Multiple Myeloma. Upon her husband death in 2013, Diahanna immediately decided to make it her mission to help patients and caregivers empower themselves to speak up and to position themselves as partners in their treatment. Diahanna became a Board-Certified Patient Advocate. She is currently the Financial Myeloma Coach for The Myeloma Crowd Foundation.
