Tag Archive for: patient advocacy

Patient Advocacy: How To Optimize Your LinkedIn Profile

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: 

  • A current version of your bio 
  • Your CV with your employment history 
  • A high-quality headshot 

1. Make A Positive First Impression

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.

2. Add A Banner Image

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.   

3. Customize Your Profile URL

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. 

4. Create Your Professional Headline

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.  

5. Add Your Location and Industry

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.  

6. Enter Your Education Details

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. 

7. Complete Current and Previous Job Experience Section

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.  

8. Add A Compelling Profile Summary

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. 

9. Showcase Your Skills

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.  

10. Obtain Recommendations

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. 

11. Add Projects, Honors and Awards

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.  

Conclusion

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. 

Setting CLL Treatment Goals WITH Your Team

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.

See More from Thrive CLL

Related Resources:

Anxious From CLL Watch & Wait? How to Cope.

What Helps Determine a CLL Patient’s Treatment Options?

Expert Advice for CLL Self-Advocacy

Transcript:

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?

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

Related Programs:

Expert Advice for Newly Diagnosed Waldenström Macroglobulinemia (WM) Patients

Expert Advice for Newly Diagnosed Waldenström Macroglobulinemia (WM) Patients

Waldenström Macroglobulinemia (WM) Treatment: Why Timing Is Essential

Waldenström Macroglobulinemia (WM) Treatment: Why Timing Is Essential

What Is the Patient’s Role in WM Treatment Decisions?

What Is the Patient’s Role in WM Treatment Decisions? 


Transcript:

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. 

Self-Education Is the Basis of Better Health Outcomes, Physically, Mentally, and Financially

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.

PEN Featured On Advarra’s In Conversations With Podcast

Patient Empowerment Network (PEN) recently had the opportunity to participate in a podcast with its partner Advarra through their In Conversations With podcast. In this episode, Becoming Your Own Best Advocate Through Patient Empowerment, Advarra’s Chief Commercial Officer Robann Cunningham and PEN’s Director of Development Robin Barnes discuss how patients can become their own best advocate through resources like those provided by PEN. 

Advarra’s Mission

Advarra helps advance how clinical research is conducted: gathering life sciences companies, CROs, research sites, investigators, and academia together at the intersection of safety, technology, and collaboration. With its trusted review solutions, innovative technologies, and consultants and worldwide connections, Advarra provides solutions that help safeguard trial participants, empower clinical sites, ensure compliance, and optimize research performance. Advarra is working on clinical trials to help make them safer, smarter, and faster for all patients. You can learn more about them at advarra.com.

Breast Cancer Survivor’s Lessons About Patient Engagement

Robann Cunningham of Advarra has a personal connection to Patient Empowerment Network’s mission through to her own experience as a breast cancer survivor. After her diagnosis with triple-negative breast cancer with a BRCA mutation, Robann was scared but also felt fortunate to have knowledge of how to take control of her cancer journey as an engaged patient. She knew about the importance of exploring treatment options and multiple opinions to decide on the best path forward for her. Robann feels that one of her goals in her mission as a breast cancer survivor is to increase patient engagement in clinical trials, and the podcast with Robin is one way she has worked toward fulfilling her goal. 

Robann collected some key takeaways from her cancer journey including:

  • Finding the right path for you is key—and knowing how to find it is even more important.
  • Education and awareness are everything.
  • We can increase the number of success stories.

You can learn more about her breast cancer experience in her article “What Being a Breast Cancer Survivor Taught Me About Patient Engagement.

Empowering Patients 

The Advarra In Conversations With podcast provides a rich conversation about patient empowerment. Robann shares some things about her cancer journey, while Robin shares about her experience as a care partner for her husband. Robann shared her views about empowerment, “The humbling experience that that was being in this industry, but I think what I really took away and what’s important here is that I would define empowerment as both awareness and advocacy and I think that if we can raise awareness, advocate, and then I would also say education is critical.”

Robin also shared PEN’s views, “Empowerment will mean something different to each and every one of us, but at the Patient Empowerment Network the core of what we believe empowerment means is having the knowledge and also the confidence to become a co-decision maker with your healthcare team, and what that often looks like is insisting on personalized treatment options it means asking questions, it means having the knowledge and education though resources…to be able to come with confidence to that conversation and make sure that what you are receiving is the right treatment for you…”

Clinical Trials Process

Clinical trials, of course, are discussed in the podcast. Robin shared, “Encouraging patients and care partners to not think of the clinical trial, as a last resort option if other treatments have failed but to consider it at the very first step of a diagnosis, and that, of course, ties into when appropriate biomarker testing and all of these wonderful tools that we  have today.”

Regarding clinical trial informed consent documents, Robann shared, “I recommend if anyone out there is considering getting involved is to really take your time through that process, make sure that you are afforded that opportunity to have a conversation with the investigator and staff you ultimately you need to have a level of confidence and a good relationship with your investigator and their team…” Patients must be given time to take the document home to review the terms and to discuss them with their care partner and family members to ensure the patient is comfortable with the proposed research. I know Robann also shared, “…there is a popular saying, which is ‘Nothing about me without me,’ and so much of what you’ve shared today, I think, really speaks to that.”

In the podcast, Robann and Robin also discuss timely topics including health literacy, health equity, actionable resources, community-based organizations, and goals for the future. PEN is excited to be partnering with Advarra to help advance patient empowerment and clinical trial efforts. We hope you can take some time to listen to the podcast or to read the podcast transcript – and to read Robann’s article about her breast cancer experience and what she learned about patient engagement. Stay tuned as we report more about our ongoing partnership efforts with Advarra in our dedicated efforts on the behalf of cancer patients and care partners.

Listen Now

Why Should Prostate Cancer Patients Partner in Care Decisions?

Why Should Prostate Cancer Patients Partner in Care Decisions? from Patient Empowerment Network on Vimeo.

Why should prostate cancer patients play an active role in their care decisions? Dr. Atish Choudhury explains the concept of shared decision-making and shares credible resources for patients.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center. Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

Related Resources

What Is Prostate Cancer Palliative Care?

What Is Prostate Cancer Palliative Care?

How Is Advanced Prostate Cancer Treated?

How Is Advanced Prostate Cancer Treated?

When Should Prostate Cancer Patients Consider a Clinical Trial?

When Should Prostate Cancer Patients Consider a Clinical Trial?


Transcript:

Katherine:

I’d like to talk about the term “shared decision-making.” What does that mean to you, exactly? 

Dr. Choudhury:

So, shared decision-making really means that when the physician conveys information to a patient, that the patient really understands what’s being said, and what, really, the alternatives are – and the real risks and the benefits of the different alternatives. And so, if a patient goes to see a surgeon and they say, “Well, we should take this out,” and there’s never really discussion of what the risks and benefits of the alternatives are –and the alternatives could be just watching, or radiation, or even more intensive treatment, then that’s not really shared decision making. 

But what I think is not exactly shared decision making is when the patient is getting information from really non-knowledgeable or non-reputable sources and then starts to come up with conclusions based on hearsay or people trying to sell them a product that really hasn’t been FDA approved or really tested. And so, those are situations where when the information is really not good, then we can run into troubles with communications. But there are a lot of really excellent sources for patient information that’s available, and the Prostate Cancer Foundation is a really good source, and a lot of the academic prostate cancer centers are really great sources of information. 

And so, being educated and asking good questions is really the best way for a patient to feel comfortable that they’re not missing anything and that they’re, again, having all the information that they need to make a good choice for themselves. 

Katherine:

Do you have any advice to help patients speak up if they’re feeling like they’re not being heard?   

Dr. Choudhury:

Sure. So, I mean, there’s never any barrier to bringing up concerns with whoever that you’re seeing, and if you feel like whoever you’re talking to isn’t being receptive to those concerns, then certainly, second opinions are very useful. But if you see multiple doctors and they’re kind of telling you the same thing based on good evidence, then you probably have to take in what they’re saying, and process it, and see if it really does apply to your particular situation. 

But any cancer doctor who really has your self-interest in mind will be very open to discussing the concerns that you have, so you should absolutely bring them up. 

What Is Prostate Cancer Palliative Care?

What Is Prostate Cancer Palliative Care? from Patient Empowerment Network on Vimeo.

What is palliative care? Dr. Atish Choudhury discusses what palliative care involves for advanced prostate cancer patients.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center. Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

Related Resources

Who Are the Members of a Prostate Cancer Care Team?

Who Are the Members of a Prostate Cancer Care Team?

An Expert Debunks Advanced Prostate Cancer Myths

An Expert Debunks Advanced Prostate Cancer Myths

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?


Transcript:

Katherine:                  

Dr. Choudhury, we received this question from an audience member prior to the program: What is palliative care?

Dr. Choudhury:           

So, palliative care is really a branch of medicine that helps with symptom management. And so, that symptom management doesn’t necessarily have to be end-of-life sort of symptoms relating to death and dying. It can be just along the way to help with managing the symptoms related to cancer and its treatment, but also to be kind of another medical provider to help with communication of goals of care – what’s really bothersome, what’s really important – so that we kind of incorporate those wishes and desires into the management decisions that we make.

So, a patient does not have to be at end-of-life to engage with palliative care. Certainly, even earlier engagement with palliative care can be helpful to maximize quality of life along the treatment journey. But as symptoms become more bothersome, certainly, our palliative care colleagues can be incredibly helpful – not just in helping manage pain, but also nausea, also depression and psychological side effects. So, they’re a really critical part of our treatment team.

Who Are the Members of a Prostate Cancer Care Team?

Who Are the Members of a Prostate Cancer Care Team? from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Atish Choudhury explains which experts comprise a prostate cancer care team. Dr. Choudhury encourages patients to take an active role as a member of their care team.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center. Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

Related Resources

What Is Prostate Cancer Palliative Care?

What Is Prostate Cancer Palliative Care?

How Is Advanced Prostate Cancer Treated?

How Is Advanced Prostate Cancer Treated?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?


Transcript:

Katherine:                  

So, who is typically on a patient’s prostate cancer healthcare team?

Dr. Choudhury:            

Yeah. So, generally, the consultations here at Dana-Farber are multidisciplinary, with a medical oncologist, a radiation oncologist, and a urologic oncologist – so, a surgeon.

And so, if a patient is a good candidate for treatment to the prostate itself, then certainly, the surgeon and the radiation oncologist will talk about those treatments. And if the treatment is primarily with medications, then the medical oncologist will generally sort of take the lead. But there is often a role for local treatment to the prostate itself, even in cancer that’s spread beyond the prostate. So, that’s why the multidisciplinary consultation is so important.

Katherine:                  

Right. What do you feel is the patient’s role as a team member?

Dr. Choudhury:           

Absolutely. So, I think it is very important for the patient to make sure that they come into these multidisciplinary meetings with questions around “What is my stage?” “What are the choices?” “What do I expect with treatment? Without treatment? With the various treatment options?” And basically, to take in the advice that they’re getting from the different members of the multidisciplinary team, and really think about how that’s impactful for them and their goals for themselves and what they really hope for the short term and for the long term.

I think what gets tricky is that there’s really very not-great sources of information that’s out there online and in YouTube videos and things like that, and I think it does play an important role for the patient to really understand what are the real high-quality sources of information – they tend to come from academic medical centers like ours. And certainly, we do encourage second opinions at other high-quality, high-volume centers so that the patients understand that the recommendations that are being made are generally made based on the based data and with people with a lot of experience at treating their kind of cancer.

Katherine:                  

What about caregivers? How do they fit into the team?

Dr. Choudhury:             

Caregivers are critical because patients are not always the most expressive at, really, what their wants, and needs, and desires are. And especially when they’re on treatment, sometimes they’re not so expressive around the things that are bothering them on a day-to-day basis.

So, the caregivers are really important for communication with us to be kind of another set of eyes and ears in terms of kind of reporting what the patient’s symptoms are or what their goals or desires are that maybe they themselves don’t feel comfortable expressing. But they also play an important role in helping us with, kind of, lifestyle recommendations to the patient. Because certainly, much of the process of doing well with prostate cancer treatments is kind of lifestyle modifications – makes sure you’re eating healthy, exercising regularly – and the caregivers can play a very important role in making sure that patients stick to that kind of regimen as well.    

Katherine:                  

I would think one of the issues for a patient too is that just having a cancer can be overwhelming and can make it difficult for them to even remember all the questions and concerns that they have.

Dr. Choudhury:            

Yeah, that’s absolutely critical, and the caregivers play a very important role. So, often, people who are not partnered, for example, will just bring a friend to these appointments just to be that second set of eyes and ears.

Why Patients Should Speak Up About WM Symptoms and Side Effects

Why Patients Should Speak Up About WM Symptoms and Side Effects from Patient Empowerment Network on Vimeo.

Is Waldenström macroglobulinemia (WM) causing fatigue? Dr. Jorge Castillo shares why WM patients should share any symptoms and side effects they experience with their healthcare team.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Emerging Waldenström Macroglobulinemia Treatment Approaches

Emerging Waldenström Macroglobulinemia Treatment Approaches

What Is the Patient’s Role in WM Treatment Decisions?

What Is the Patient’s Role in WM Treatment Decisions?

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions


Transcript:

Katherine:                  

Fatigue seems to be very common among Waldenstrom’s patients. Here’s a question that we received before the program. Kasey asks, “Why do I feel so tired all the time? Is there anything that can be done about it?

Dr. Castillo:               

That’s a great question, and as I said before and basically kind of summarizing what I put together, I mean, there are many patients why a symptom with Waldenstrom’s could be fatigued. One of them is they could be anemic. The other one, they could have some hyperviscosity symptoms causing some fatigue, maybe some inflammation in the body because of the Waldenstrom’s, but maybe there are other reasons why patients can be fatigued.

And if you go out there in the streets and you start asking people, “Are you tired?” 80 percent of Americans are going to be tired. I’m not trying to minimize the symptoms of the patients. What I’m trying to say is we need to be very careful at understanding what the relation of the fatigue is with the disease. We need to be convinced that there is a relation there.

If that happened in my clinic – for example, a patient comes to see me, and they are fatigued; their hemoglobin is 14, which is normal; their IgM is about 1,000, which is not supposed to cause hyperviscosity. So, I do not know really in that context if the Waldenstrom’s is driving the fatigue or not.

Katherine:                  

Or if it’s something else.

Dr. Castillo:               

Exactly. So, we need to make sure that the patient doesn’t have any iron deficiency, that the patient doesn’t have any thyroid problems, that the testosterone problems are okay, that there’s no sleep disturbances, that there’s no depression. So, there’s so many different other things that we need to make sure are not there before we mount into that. Because if someone is fatigued with a hemoglobin of 8, which is very low, with my treatments, if I make that 8 14, I know the fatigue is going to get better. But if the patient is fatigued with a hemoglobin of 14, which I am not going to improve with my treatments, then how confident do I feel that I’m going to improve the patient’s quality of life with a potentially dangerous treatment?

So, we talked about already secondary leukemias, neuropathy, other problems that the patient can have with the treatments or because of the treatments.

So, we need to balance that out and understand that the potential benefit has to be higher than the potential risk, and that’s why the personalization comes into play. So, fatigue is a big issue, and we try to take a very systematic approach about that, you know, ruling out other conditions, making sure that we understand its relation with the disease before recommending treatment just for fatigue.

Katherine:                  

Yeah. This is one side effect that is so important for patients to share with their healthcare team, right?

Dr. Castillo:               

Oh, absolutely.

Katherine:                  

So that their healthcare team can know how to treat them.

Dr. Castillo:               

That’s right. And again, there are so many interventions that are not medications that could be done in these type of situations, right? Meditation, mindfulness. There are so many other approaches to try to help in these type of situations, changing a little bit sometimes the perspective, trying to be a little bit more on the positive thinking, right?

So, there are so many different ways outside of pharmacological approaches that we can use to try to improve our patients’ quality of life.

Katherine:                  

Yeah. Knowing that one has an incurable disease can be very stressful, right? Knowing that you have to live with this.

Dr. Castillo:               

That’s absolutely correct, and again, what I’ve seen happening in some of my patients is every little thing that happens to them, they do not know if it’s because of the disease or not.

Katherine:                  

Oh, yeah.

Dr. Castillo:               

“So, I have a twitch there. Oh, it’s due to Waldenstrom’s. Do I need to be treated because of that twitch?” And that, I understand it. Well, I try to understand it. I’m not in that same situation, so I cannot understand it completely. But I try to understand how if you don’t trust your body anymore, right? I mean, you have a disease, and you don’t trust your body anymore, then how you trust all these little symptoms here and there?

So, in my conversations with my patients, I discuss these things openly and that you’re going to have a lot of different symptoms here and there. Most of them probably are not going to be related to the disease, but if some of them are concerning enough to you in terms of your activities, in terms of eating, drinking, sleeping, social life, sexual life, you know, working life, then let me know, and then we will be happy to investigate those because anything can happen to anybody.

So, you can have other problems. Waldenstrom’s doesn’t protect you from anything, so, and it’s always important to discuss this with patients and pay attention to the patients, not dismiss their symptoms, think about them with them, talk about them with the patients to try to understand how these are affecting them.

What Is the Patient’s Role in WM Treatment Decisions?

What Is the Patient’s Role in WM Treatment Decisions? from Patient Empowerment Network on Vimeo.

Dr. Jorge Castillo discusses the patient’s role in their Waldenström macroglobulinemia (WM) treatment decisions and shares advice encouraging patients to be active participants in their care.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Emerging Waldenström Macroglobulinemia Treatment Approaches

Emerging Waldenström Macroglobulinemia Treatment Approaches

When Is It Time to Treat Waldenström Macroglobulinemia?

When Is It Time to Treat Waldenström Macroglobulinemia?

Why Patients Should Speak Up About WM Symptoms and Side Effects

Why Patients Should Speak Up About WM Symptoms and Side Effects


Transcript:

Katherine:                  

What do you feel is the patient’s role in treatment decisions?

Dr. Castillo:               

From my perspective, the patient’s role is very important. I need, as a physician, that the patient feels that it’s part of the team here. So, when patients come to see me, I strongly encourage patients to bring as many people as they want with them. If they want somebody on FaceTime at the same time, I’m happy with that too. And that helps because the amount of data that we provide, the amount of information that we provide, is a lot in terms of quantity. But sometimes, it’s not easy to understand when you just hear it one time, right?

So, having somebody taking notes, having somebody else taking notes, having somebody else listening, somebody else asking questions, and then somebody else explaining back to the patient – the patient is looking for the best for them, but if he’s also affected by the whole process. It would be naïve to feel – or to think – that somebody was told they have an incurable blood cancer, and they are completely paying attention to everything you’re saying, after you said something like that.

So, I think it’s important for patients to be there with family, friends, or whoever wants to be there to help out. I think that’s a really important aspect. Then, number two is you need to know about your own disease. And I am fortunate to work with a group of patients who are highly educated, to the point that they get to know more about their disease than their own doctor. And I think that’s key. I think that’s important. For me, that is not threatening or challenging. I think that is actually a good thing.

And that way, I can have a more direct conversation, meaningful, because I understand that the patient is understanding what I am saying, and we are trying to speak the same language, so I think that is key also. So, bottom line, I think education from the patient perspective, involvement of their care, I think that’s key so they can be their own best advocates.

There is going to be a lot of – since it’s a rare disease, there’s going to be a lot of backs and forths with different physicians. Some physicians are going to be more intensive and trying to treat when the patient doesn’t need to be treated. The opposite is also true in which a patient, they do need treatment, and the physicians are saying, “No, we can wait a little bit longer.” And again, that has nothing to do with the quality of the doctor. It’s just the fact that the disease is rare, and to keep up with it is very difficult. So, the patient being their best advocate is actually a very important role that they should have.

Katherine:                  

Knowledge is power.

Dr. Castillo:               

That’s right.

The Importance of Patient Self-Advocacy in Bladder Cancer Treatment

The Importance of Patient Self-Advocacy in Bladder Cancer Treatment from Patient Empowerment Network on Vimeo.

Bladder cancer expert Dr. Shilpa Gupta encourages patients to advocate for themselves and to become active members in their treatment and care decisions.

Dr. Shilpa Gupta is the Director of the Genitourinary Medical Oncology at Taussig Cancer Institute and Co-Leader of the Genitourinary Oncology Program at Cleveland Clinic. Dr. Gupta’s research interests are novel drug development and understanding biomarkers of response and resistance to therapies in bladder cancer. Learn more about Dr. Gupta, here.

See More From The Pro-Active Bladder Cancer Patient Toolkit

Related Programs:

 

Emerging Approaches in Bladder Cancer Treatment

Understanding Common Bladder Cancer Treatment Side Effects

Understanding Common Bladder Cancer Treatment Side Effects

Who Should Be on Your Bladder Cancer Care Team?


Transcript:

Katherine:                  

Right. Let’s talk about patient self-advocacy for a moment. Patients can sometimes feel like they’re bothering their healthcare team with their comments and their questions. Why is it important for patients to speak up when it comes to symptoms and side effects?

Dr. Gupta:                  

Yeah, I think the patients have to be their own advocates, right? Unless they do tell their team about what they are going through, many times action will not be taken unless they’re actually seeing their team in real-time.

And sometimes that visit may not be happening for months so it’s very important to never feel that you’re bothering the teams. And nowadays, with all these electronic ways where patients can communicate with their teams, I think patients are very aware that they can send a MyChart message, for example, and someone will get back to them within a day. So, I think that is really important and the way they can communicate with their teams has also evolved.

Katherine:                  

How do you think patients can feel confident in speaking up and becoming a partner in their own care?

Dr. Gupta:                  

I think they have to tell their doctors during their visit that they would like to – whatever their expectations are and what they would like their teams to do to fulfill those expectations.

I think that’s the best way I can say this. That they should always speak up no matter what and if they feel that their concerns about treatment are not being heard, then they should let their treatment teams know and ask what alternative treatments there may be. Or, if their life goals have changed, sometimes patients want to get aggressive treatment and sometimes they just don’t want to go through it anymore. They should let their teams know so, adequately; the goals of care can be modified.

Katherine:

Right. If a patient isn’t feeling confident with their treatment plan or their care, should they consider a second opinion or consulting a specialist?  

Dr. Gupta:

Absolutely. I think every patient has a right to consult a second opinion or get second opinions, or even more opinions if they want to make the right decision. Many times, patients are told about one treatment option, and then they want to know, “Well, what alternative options do I have?” “What if I really don’t want my bladder out?” “Is there anything else that can be done?” So, they should be seeing a radiation oncologist in that case.  

I think the way we can really make a difference and offer multidisciplinary care is to have the patient see a surgeon, a radiation oncologist, and a medical oncologist. That’s true multidisciplinary care for anybody with localized disease. For metastatic disease, we have a lot of options and usually medical oncologists are the ones who manage it.   

Patients can always get second opinions if they feel they want to do something less or more aggressive.   

Katherine:

What advice to have for patients who may be nervous about offending their current doctor by getting a second opinion?  

Dr. Gupta:

That’s a great question, Katherine, and I know a lot of patients feel that their doctors may feel offended, but in my experience when – if my patients are not local or they – I actually encourage them to go get second opinions and even make referrals to places which may have trials if we don’t have that. It’s always good to have the patients be able to decide and I don’t think nowadays doctors take offense if patients want to get another opinion. In fact, we try to collaborate with our community oncologists.  

Where, let’s say patients are currently being treated and they come to us to discuss trials or just to discuss if they’re on the right track. We reassure them and reach out to the community doctors that – yes, we totally agree with what the patient is doing, and these are some other options down the line. And, with the advent of virtual health it’s really become a lot more collaborative because patients are still getting treated locally. When the have their scans and have questions they can schedule a virtual appointment with their doctors in institutions where we have more treatment options like trials.  

Katherine:

Dr. Gupta, if patients want to learn more about bladder cancer, or if their families want to learn more what are some credible resources that you would send people to?  

Dr. Gupta:

Yeah, I think it’s always good to get credible information than just Googling things which may or may not be true. Bcan.org is a very powerful resource that is a Bladder Cancer Advocacy Network, and as the name implies it’s for the patients, made by bladder cancer advocates.   

That’s one of the resources that we highly recommend. Then there’s the resource that you all are working on. So, I think these collectively are the best sources of information which patients should try to stick to.   

Katherine:

Right. That’s good advice. To close, what would you like to leave our audience with? What are you hopeful about?  

Dr. Gupta:

I think I would like to say that there’s a lot of good information, there’s a lot of advocacy resources. Patients should try to get their information from these verified sources and bring it to their care teams. And never hesitate to reach out for whatever they need during their diagnosis and treatment phase. Always ask questions. Ask about clinical trials. Ask about alternative options. That’s what I would leave the message to be.   

Katherine:

Thank you so much for joining us today, Dr. Gupta. We really appreciate it.   

Dr. Gupta:

Thank you, Katherine.   

Why Non-Small Cell Lung Cancer Patients Should Speak Up About Symptoms and Side Effects

Why Non-Small Cell Lung Cancer Patients Should Speak Up About Symptoms and Side Effects from Patient Empowerment Network on Vimeo.

Dr. David Carbone, a lung cancer expert, emphasizes the importance of speaking up, advocating for yourself, and being an active member of your non-small cell lung cancer health care team. 

Dr. David Carbone is a medical oncologist and professor of internal medicine at The Ohio State University. Dr. Carbone is also co-leader of the Translational Therapeutics Program at the OSUCCC – James, where serves as director of the Thoracic Oncology Center. Learn more about Dr. Carbone, here.

See More From INSIST! Lung Cancer

Related Resources:

What Treatments Are Available for Non-Small Cell Lung Cancer?

How Is Non-Small Cell Lung Cancer Staged?

Immunotherapy for Lung Cancer Treatment: What to Expect

Immunotherapy for Lung Cancer Treatment: What to Expect


Transcript:

Katherine:                  

Patients can sometimes feel like they’re bothering their healthcare team with their comments and questions. Why is it important for patients to speak up, and become a partner in their own care? 

Dr. Carbone:              

So, it’s a fact that when patients get the diagnosis of lung cancer, everything changes in their lives. They suddenly have a whole new vocabulary thrown at them. It’s like their doctor is speaking French to them. They have to trust their life to a person they’ve never met before, and a whole cadre of people coming in and talking to them and poking them and running through scanners. 

It’s very difficult for someone whose biggest concern was what to make for dinner that night, and now has a diagnosis of lung cancer, to really comprehend what’s going on. And lung cancer is complicated, so I recommend that patients really try their best to have at least a basic understanding of what’s going on, where their cancer is. I always show the patient their scans.  

“Your cancer is here; this is what it looks like; that’s why you’re having that pain over there, because you have this spot here. Your genetic testing shows this and this, and that’s why it’s important, and that’s why we’re using this drug to match this mutation.” And these are things patients will understand if doctors will explain it to them.  

And similarly, the side effects. Lung cancer patients tend to be tough people. They’ll say, “It’s not so bad, I feel better; but the side effect is not so bad. I’m just not going to tell them.” And it even happens in clinic that they’ll tell me they feel fine, and then they’ll tell the nurse that they hurt in their left elbow. And I have to go back in and ask them some more questions on that.  

So, it’s extremely important to feel comfortable in communicating with your doctor, asking questions; “Why am I getting this scan? Why are we using this treatment? Is this the best treatment? Are there clinical trials available? I have this new symptom, x, y, z,” because symptoms are often much easier to treat when you catch them early than when you catch them late.  

And you don’t get a medal for being a tough guy in this situation. Tell your doctor if you have pain, and they can manage it. Tell them if you’re short of breath, and they can help you feel better. They can’t help you if you don’t tell them, and you are your own best advocate in this situation. Ask questions about the treatment, and why that’s the best one for you; and, as I said, about clinical trials. 

Katherine:                  

Excellent. Thank you so much. It’s important for people to remember that.  

Patient Advocacy: 10 Tips For Creating A Powerful PowerPoint Presentation

Patient advocacy involves sharing your unique knowledge and experience with a disease or condition with the ultimate aim of raising awareness and influencing people to effect a desired change.

For us to be able to effectively advocate for our cause, we need to have a variety of advocacy tools in our toolbox. I shared tips and techniques with you last month for improving your writing skills. For this month’s advocacy skill, I want to focus on designing impactful slide decks.

Many times when asked to speak at a conference or event, we turn to PowerPoint to help us tell our story and make our key points more memorable. If you’ve ever sat through a boring slide presentation, you’ll know there’s an art to creating a great slide deck. The following tips will teach you how to avoid creating a boring presentation – the so-called “death by PowerPoint” syndrome.

Let’s start by preparing the ground.

1. Decide What You Want To Say

A good slide deck begins with thorough preparation. Before opening PowerPoint, ensure that your message is clear. A common mistake is to launch PowerPoint, add a slide, think of points, and then add more slides.

If you find that you have several messages you would like to deliver, challenge yourself to write down your core message in one or two clear sentences.  Once you have a clear focus for your talk, you can then group your other ideas around it.

Start by jotting down answers to the following questions:

  • What is the purpose of this talk?
  • What level of knowledge will your audience have?
  • What do you want them to know, feel, or do after they have heard you speak?

Your presentation should always have a clear purpose, something that the audience walks away eager to do. It may help to start by identifying the main takeaway you want people to remember – and then work backward to figure out how to get there.

2. Gather Supporting Facts and Figures

Which key facts and figures are you going to present? Could you incorporate any research studies to make your message stronger?  You can use diagrams and charts (PowerPoint has a selection of shapes and SmartArt) to help you present information in a visually appealing way.

3. Structure Your Points

Now it’s time to organize your key messages and research points. Following a structure helps you stay on track and helps your audience follow along with your points logically.

Prepare the opening to your presentation. What would you like to share? Statistics, or a research study from Step 2? Or perhaps you’d like to share your personal story to introduce your work. As I wrote last month, one of the most effective ways to capture attention is by sharing a story. Your brain reacts differently to a story than it does to any other type of information, including straight facts and data. While facts and figures engage only a small portion of the brain, stories engage multiple brain regions that combine to create rich emotional responses.

Next, order your main points in a way that will make sense to your audience. Reflect on your key points and how you might emphasize them.

Finally, decide on the take-home message or call-to-action you want to deliver to your audience and how you will do so. Your call to action should convey a sense of urgency. Why is it critical that they hear your message and take action right away? What will happen if they don’t do anything?

4. Get Creative With Your Slide Design

Now comes the fun part – designing your slide deck. Remember you don’t have to stick to the standard over-used slide templates provided by PowerPoint. Get creative and design your own customized template with your own choice of colors and logo.  The design tool Canva is a super tool to help you with this.

5. Less Is More When It Comes To Text

One of the main causes of boring slides is overloading the slide with too much information. When too many details appear on the slide, your risk losing the audience’s attention. Think of PowerPoint as a visual background to your presentation. It is not your talk. You want your audience to listen to you, rather than read the screen.

Present one key point per slide so that the audience can fully process each point before moving on to the next idea. The information is easier to understand when presented one point at a time, and the audience is less likely to experience information overload.

6. Choose Fonts With Care

When selecting fonts for your presentation, keep in mind that how you present your text is an important factor in making your slides clear and compelling. As a general rule, sans-serif fonts like Arial, Veranda, and Helvetica work well for headlines, while serif fonts like Palatino, Courier, and Times New Roman work well for body text.

If you’re presenting in a large room, use a font size that everyone can read. If possible, you should test your slides on the screen you’ll be using to present to determine the font size that works best.

7. Maintain Consistency

Stick to a consistent visual theme throughout your presentation. Use a grid system on your master slide pasteboard to keep your layouts well-structured and clean.

8. Add Visual Appeal

Find some compelling images to capture the audience’s attention. To ensure that your image looks good when blown up to full-screen proportions, choose an image with a high resolution. Be wary of using images from Google unless they’re licensed under “Creative Commons.”

Aim for one image per slide. More than that looks cluttered and is less impactful. When adding text to a background image, choose an image with plenty of “whitespace” so that it can be read clearly. If your background image lacks whitespace, use a blur effect or a gradient fill when adding text.

Slides with animated transitions should be used sparingly. The gradual slide-in or fade-in of the next slide can add a touch of style to a presentation, but on long presentations avoid excessive use of transitions from slide to slide or animated bullet points.

9. Make Your Slides Accessible For All Viewers

Did you know that PowerPoint has a built-in Accessibility Checker to help you prepare your slides for people with disabilities?

Go to File > Info > Check for Issues > Check Accessibility to find this feature.

10. Rehearse and Rehearse and Rehearse

Finally, practice your presentation with your slides until you feel confident delivering your speech in front of an audience. The best PowerPoint tips won’t help you if you trip over your slide transitions or if you can’t fit the number of slides within the time allotted to you. You can practice your presentation using PowerPoint’s Rehearse Timing feature.

I hope you found these tips useful. Giving a presentation can be stressful, but you can be more confident doing so knowing that you’ve designed an impactful slide deck.

Best of luck with your next presentation!

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

When it comes to sharing your advocacy message visual impact is a key factor in creating more visibility for your cause and increasing online engagement. In an increasingly crowded digital landscape, where our minds are drawn more readily to content that catches our eye, images can break through the online content clutter to quickly communicate your message.

It stands to reason that the visuals you create and share online should set the right professional tone for your advocacy activities. To help you do this, I’ve put together a list of six tips to increase the visual impact of your social media posts, alongside a list of tools to help you create more professional-looking graphics.

1. Upload A High-Resolution Image

Upload larger high-resolution images to social media. When an image file is too small, it will stretch, resulting in poor image quality and pixelation. Pixelated images appear unprofessional and reduce the likelihood they will be shared by others.

2. Choose Clear Typography

Typography is made up of elements such as font type and size, kerning (white space between individual characters or letters), and tracking and spacing. Typography is important when it comes to making your content more understandable to your reader. Visit Google Fonts directory, a free tool to help you choose the best font for your graphic design.

www.fontsgoogle.com

3. Pick The Right Colors

Color design is an essential design element. Ask yourself if your color choice is easy on the eye. If you use a combination of colors do they complement each other? Complementary colors are those that are placed opposite to each other on the color wheel.

Keep your color palette simple. Don’t be tempted to use too many colors in your designs. Pay attention to the hue and saturation values of the chosen colors – lightening or darkening tones to convey more warmth or strength as needed.

Consider how color can elicit emotion, which can result in either negative or positive feelings. A vibrant red, for example, makes a design element more stimulating and is good for drawing attention, such as for a call to action button. Red, on the other hand, can have more negative connotations – red for danger. It’s also a difficult color to see, especially for those who are visually impaired. If you choose to use red in your designs do so sparingly and intentionally.

4. Make Good Use of White Space

This tip is all about learning to embrace white space in your design template. Make use of grids when laying out your design. Layout grids help designers position text and images in a way that looks coherent and easy to follow.

5. Adapt Your Images To Suit Each Social Platform

No one post fits every platform. Each social network has its own dimensions and your design needs to be adapted to fit. An image creation tool like Canva makes it super easy to create your image according to the dimensions of your chosen social channel.

6. Avoid Using Stock Photos

The best images to create connections online are authentic images. Try as much as possible to use your own photos and images in your design. That’s not to say you can’t ever use stock images, but be mindful of not turning to over-used, cheesy stock images.

Ten Tools To Create Professional Looking Graphics

1. A Color Story

This app lets you choose from a large selection of filters to make your photos stand out. Instead of filtering your photos to look all the same, A Color Story filters aim to enhance the color you’ve chosen in your composition. One very helpful feature of the app is that it lets you save your editing steps to reuse for future edits, which will save you time when batch-editing photos.

Acolorstory.com

2. BeFunky

There is so much you can do with this tool to enhance your visual assets, including creating collages, adding “one-click” photo effects (there are over 300 photo effects and filters to choose from), and an array of graphics (e.g. speech bubbles). The basic account is free to use and provides users with access to a library of 125 digital effects.

Befunky.com

3. Canva

Whether you want a Twitter post or Facebook profile picture, you can create them quickly using Canva’s drag and drop editor. Select from a number of pre-set designs, or create something from scratch.

Canva.com

4. Easil

Easil is an online graphic design tool with pre-made templates that you can adapt in seconds with simple drag-and-drop tools. It’s especially useful for Instagram and Facebook stories.

easil.com

5. Infogram

Infographics are a great way to present your data in a creative way and this free design tool makes it super simple to put together your own infographics.

Infogram.com

6. Life of Pix

Life of Pix offers free, high-quality images that are available for personal and commercial use. Each comes with a helpful color palette so you can plan your visuals accordingly.

Lifeofpix.com

7. Quotes Cover

Quotes Cover turns quotes or short text into images for social media and high-resolution images for posters or other print designs. It’s so simple to use. Simply enter your quote or text and then choose your preferred design elements, such as font, shadow effect, and color.

QuotesCover.com

8. Ripl

A mobile app that lets you create short animated videos with professionally designed templates. Ripl is integrated with the major social media platforms, so sharing your final video is easy. Once you’ve connected your social profiles to Ripl, you can post directly to Facebook, Facebook groups, YouTube, LinkedIn, and more. You can export your videos if you want to use them outside of your social media platforms.

Ripl.com

9. Typito

Typito allows you to make video content using its drag and drop tool, and add images, music and captions. Once you create your video you can export it into several formats, including landscape, square, etc. — giving you perfectly cropped videos for the platforms you use the most.

Typito.com

10. Unsplash

Unsplash gives you access to a bank of 50,000+ free-to-use photos. You can subscribe to receive ten new images every ten days directly into your inbox.

Here’s to your social media success!

Myeloma Research: What’s the Latest Treatment News?

Myeloma Research: What’s the Latest Treatment News? from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Rafael Fonseca shares updates from recent conferences and provides tips to help you stay up-to-date on myeloma research developments.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

See More From Engage Myeloma


Related Programs:

How Can Myeloma Patients Take an Active Role in Their Treatment and Care?

Myeloma Treatment: When Should a Clinical Trial Be Considered?

An Expert’s Take on Promising Myeloma Treatment and Research


Transcript:

Katherine:

Dr. Fonseca, have there been any recent developments in myeloma treatment in research that make you hopeful?

Dr. Fonseca:

Absolutely. I would say that the one area of work that makes me most hopeful is what we’re seeing with immunotherapy. We have seen that both as the ASH meeting, as well as the ASCO meeting in this year, where people are presenting updates with the various clinical trials with either bi-specific antibodies or CAR T-cell therapy as a new avenue for the treatment of myeloma.

In fact, at the last ASH meeting, we had 14 presentations of different compounds or different constructs that are active.

I think the future is bright in that regard. We’re seeing their application right now. A lot of these updates have also been made at ASCO.

We’re seeing the update of the treatment of treatments with fairly advanced and aggressive disease where we can still show very significant responses. I participate in some of these trials. I can tell you in my institution, using some of the bi-specifics, I see patients who have previously exhausted all of their options and now are MRD-negative at 10 to the -6.

If we’re seeing that in the very advanced disease, I cannot wait to see what happens when we start using these treatments in either early relapse and why not in the near future as frontline part of our therapy? I think to me, that whole field of T-cell engagers, where there’s bi-specifics or the CAR T cells remains one of the most exciting areas for future research.

Katherine:

How can patients stay up to date on information like this?

Dr. Fonseca:

I think what we alluded to before is very important to work with groups like yours and other patient support organizations that can keep them up to date. I think they’re doing a very good job at also providing updates post some of the large meetings. I know there’s a lot of patients out there that are very sophisticated that will even join the medical meetings. That happens with some frequency; that they want to learn, and patients that go and ask me details about the statistics of the trial. That’s a whole spectrum, right?

But at the minimum, I would say a strong connection with a support group, or a patient support organization becomes an imperative as you deal with

this. Also, that would help you because with this whole concept of the information not always being complete and truthful, that can be scary as well, too.

If someone goes and just looks for, I would say even some of the resources that are out there in a textbook today, just keep in mind that textbook was probably written five years ago, and it represents the studies of about 10 or 15 years ago. How that relates to you, it’s very distant. So, it is because of this continuous process of research that we know better what’s going on at the present time.