PEN Blog Archives

The Power of Shared-Decision Making: A New Revolution of Care

/in , /by

I remember my treating surgeon discussing my treatment options with me when I was first diagnosed with cancer back in 2017 at the age of 27. I didn’t know much about thyroid cancer, what a thyroid was, or about cancer itself. Of course, no one plans to get cancer in the first place, especially at a young age, so I felt like I was being guided by my care team appropriately. I believed in the “power” of the white coat, a doctor who knew I had my best interest at heart. What I didn’t know was about different options when it came to treating my type of cancer, which my doctor explained to me in terms that I understood. I didn’t know it at the time, but my doctor was engaging in what’s called “shared-decision making,” when the patient and their care team, including their doctor, take the time to talk about different options and how it will affect the life of the patient moving forward. 

To give an example, I was given the option of removing the half of the thyroid that contained the tumor and leaving the other half in, as opposed to removing the entire gland. My doctor explained the pros and cons of both types of surgeries so that I could make a well-informed decision with my caregivers, and as a result, I felt like a more prepared patient. 

From this experience, I learned how important it is to have a good relationship with your entire care team, especially with your treating physician, such as an oncologist, or in my case, a surgeon and endocrinologist. Having an ongoing back and forth conversation that fuels this type of relationship is especially important, too, as I believe it can directly impact patient compliance. For example, as part of ongoing surveillance for my diagnosis, and typically for any cancer diagnosis, ultrasounds and bloodwork are performed on a routine basis, such as every 3-6 months, or even yearly. If a patient doesn’t know why this is being done, they may forgo either of these types of appointments, especially if they’re expensive.

Another example of patient compliance is compliance to medication instructions. Doctors and patients alike should have a conversation about how these medications are to be taken, especially if the medications are newly prescribed. Often patients are labeled as “non-compliant,” but more likely than not, they don’t understand. This is where communication, a strong relationship, and shared decision making come in to enhance patient outcomes. 

As patients, we have to be advocates for ourselves when it comes to our health, which also involves our care team involving us in our own healthcare. We should feel emboldened to do this, not afraid. If you don’t feel comfortable discussing your treatment and your opinions with your physician and care team, then it’s time to find another group, and that’s 100% okay. Be your own empowered patient! 

#patientchat Highlights – Self-Advocacy and Self-Education

/in , , /by

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

Top Tweets

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

Tweet from Alan Brewington

How can you become an effective self-advocate?

 

Full Transcript

Hospital Charity Programs: What You Need to Know

/in , /by

Understanding Hospital Charity Programs

Many of you may be aware that some laws have changed regarding reporting of medical debt to credit agencies. Those new laws are most favorable to individuals. Particularly for those patients who have frequent doctor visits and accrue numerous bills. However, it is most surprising to me that many patients are not aware of the many programs that can help them pay for medical care that they have amassed. Here is the low-down on what you need to know in order to access these charitable funds if you are going to a non-profit or a for-profit hospital for your care. 

What is a Hospital Charitable Program and How can you access it?

According to the IRS, Non-Profit hospitals or NFP’s are those hospitals that are not required to pay property-tax, state or federal income tax, or sales tax. Non-profit hospitals account for nearly 58% or three fifths of community hospitals and provide charity programs. Parameters are set by federal regulation in addition to charity-care policies that are set up by individual hospitals. The policies set up by individual hospitals can vary in terms of eligibility criteria, application procedures, and the level of charity provided. Hospitals bear the direct costs of providing charity care, support from donors and federal, state, and local governments may cover some or even all of these expenses.  

In exchange for tax-free status, nonprofit hospitals are expected and required to distribute any additional capital back into their surrounding communities. Because of this, non-profit hospitals face additional scrutiny by healthcare policymakers concerned as to whether and how the facilities are following through and contributing to their communities in a meaningful way to justify the tax exemptions that they are receiving. They question how the funds in the communities are being spent. 

You should know the type of  facility you are visiting. Don’t be afraid to ask. Find out about their charity and community programs. Many states have required that this information be readily available to patients. Unfortunately this isn’t always the case. Ask for a copy of their charity plans and how to access it. Get names and the phone number of people who manage it.  

For-profit hospitals are investor-owned. These facilities aim to make profits for their shareholders. Some of the largest for-profit hospital chains in the U.S. include Hospital Corporation of America,And HealthSouth. Not surprisingly, for-profit hospitals are generally among the highest-billing hospitals in the country.  

How do they compare?

Day to day functions look very much the same between the two types of organizations One very distinct difference however, is that for-profit hospitals typically use considerable portions of their available budget for marketing and advertising initiatives, as compared to non-profit facilities. For-profit hospitals tend to serve lower income populations while nonprofit hospitals are generally found in communities with higher average incomes and fewer under and uninsured patients.  

Consequently, nonprofit hospitals maintain higher bad-debt to net patient revenue ratios than for profits, although for profits with the highest bad debt to net patient revenue ratios tend to maintain higher ratios than nonprofit facilities. 

A study done in 2020 found that nonprofit and for-profit hospitals provide similar levels of charity care-another type of uncompensated care-when examined as a percentage of total debt. 

The Internal Revenue Service defines charity care or financial assistance, as “free or discounted health services provided to persons who meet the organization’s eligibility criteria for financial assistance and are unable to pay for all or a portion of the services provided”. In some cases depending on their criteria hospitals may provide charity care to both uninsured and insured patients.  

Who is eligible for hospital charity care?

Hospitals have a lot of flexibility to establish their own criteria for charity care. For instance, one analysis of a large sample of nonprofit hospitals that used the Federal Poverty Level to determine eligibility for free care in 2018, found that about one in three (32%) of the hospitals required patients to have incomes at or below 200%  the FPL or imposed more restrictive eligibility criteria, while the remaining sample (68%) relied on higher income caps. For discounted care, (62%) of nonprofit hospitals in the study limited eligibility to patients with incomes at or below 400% FPL or used lower income levels. The remaining (38%) rely on higher income caps. 

The conditions that hospitals put on the free or discounted care can vary. Patients may need to have few assets or must live in hospital service areas. Other criteria may also become  determining factors for free or reduced care.   

Unfortunately, from my experience, all patients are not getting access to this free reduced care because the information is not readily available or they don’t know that they may be eligible. For example, non-profit hospitals have estimated that  of the bad debt they reported in 019 reflecting 2017 expenses or earlier, about $2.7 billion came from patients who were likely eligible for charity care but did not receive it. Now it would be interesting to see how this picture has changed post COVID. These numbers are rough estimates coming from unaudited hospital reports and do not account for all facilities or for patients who qualified for charity care but still paid their bills.  

Patients have a right to know the cost of care and where they can get help if they qualify. Don’t hesitate to ask what’s available at your care facility. Ask prior to services and after services are provided. Fill out your required documentation and do so in a timely manner. Be empowered to better your physical and financial health. 

True Patient Empowerment: Bridging the Myeloma Patient and Expert Voice

/in , , , , , , , , /by

Multiple myeloma can sometimes feel overwhelming and complicated, but what can patients and care partners do to help improve their care? With this question in mind, the Patient Empowerment Network initiated the START HERE Myeloma program, which aims to bridge the myeloma patient and expert voice to build empowerment. 

Myeloma patient and expert

START HERE Myeloma Program Resources

The program series includes the following resources:

Patient-Expert Q&A Webinar Topics and Key Takeaways

In the PatientExpert Q&A webinar, renowned multiple myeloma expert Dr. Sikander Ailawadhi from the Mayo Clinic shares his expert knowledge to help patients and care partners fortify their knowledge and confidence, while myeloma patient and Empowerment Lead Lisa Hatfield moderates the discussion and shares some of her views as a patient. Dr. Ailawadhi and Lisa provided some in-depth discussion along with key takeaways. Some of the discussion covered:

Among some key points, Lisa shared her perspective about seeing a myeloma specialist, “There is great importance in seeking out the expertise of a myeloma specialist, even if it’s just when you’re newly diagnosed, going for a consult once and then maybe upon relapse going again, if you don’t live near it, a specialist, seeking out the expertise of a specialist is really critical.”

Dr. Ailawadhi provided his expert perspective about recent developments in multiple myeloma research and treatments. “Myeloma treatment is going through a change where immunotherapy and harnessing the body’s own immune system is becoming extremely important. And when we do that, the immunotherapy is typically very targeted, so what these drugs these agents, these terms, this alphabet soup is doing is it is targeting specific markers on the myeloma cell on the plasma cell.” 

Dr. Ailawadhi also shared his excitement about the future of  myeloma care. “So why is this important for everybody, whether they are newly diagnosed or relapsed or long-term survivor with myeloma, because this tells you that not only are we getting newer drugs in the same classes, we are also getting brand new classes of drugs. And you can imagine that means that those brand new strategies are ways to target the plasma cell, we know cancer cells are smart, and they develop invasive mechanisms to become resistant to drugs. But every time something gets resistant if we have a brand new mechanism to go against the disease, but that’s exciting because that’s why we are seeing deeper responses, even in very heavily pre-treated patients, because we are using newer specific, relatively safe, convenient strategies to going after the plasma cell.”

Dr. Ailawadhi has also been very involved in researching and working to improve healthcare disparities, and he shared some of this knowledge during the webinar. “Kidney dysfunction can be seen in as much as 20 percent of patients at the time of diagnosis, and there are a significant number of patients who would have kidney dysfunction even as they go on with their myeloma journey. I’m interested in these healthcare disparities. I just want to point out that patients who are African Americans do tend to have a much higher incidence of kidney dysfunction and need for kidney dialysis with myeloma at the time of diagnosis or even with treatment.” 

Man using a tablet

Some program participants provided valuable testimonials about the START HERE Myeloma Patient-Expert Q&A webinar. 

  •   “I have been a myeloma patient for 8 years. This was one of the best webinars I have listened to. The speaker was excellent and the questions presented were great! Thank you for a wonderful session!”
  •   “This program was well thought out and I felt like Lisa was reading my mind! Super job. It makes living with a serious condition a little less scary when you see so many people have the same questions as you.”
  •   “Thanks for a great discussion. It felt like it wasn’t a lecture, but a conversation. Lisa is an inspiration to our support group members in South Carolina. We will be sharing this when we meet next week.”

We hope you can use these valuable multiple myeloma resources to build your knowledge and confidence toward becoming a more empowered patient or care partner.

30-Year Acute Myeloid Leukemia Survivor Shares His Journey

/in , , , , , , /by

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

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

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

See More from [ACT]IVATED AML

Related Resources:

Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

 How an AML Survivor’s Resilience Saved Her Life

How an AML Survivor’s Resilience Saved Her Life 

 Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 

Transcript:

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

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

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

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

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

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

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

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

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

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

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

Share Your Feedback About [ACT]IVATED AML

Becoming an Empowered and [ACT]IVATED AML Patient

/in , , , , , , , , , /by

Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the acute myeloid leukemia (AML) community. AML is shown to impact younger patients compared to other types of blood cancer. In addition, there are some marginalized communities of Black and Latinx AML patients that experience disparities in health outcomes. Recent studies in AML have shown higher mortality rates and higher rates of AML recurrence in Black and Latinx patient groups. PEN aims to help empower patients in their care. With this goal in mind, we kicked off the [ACT]IVATED AML program, which aims to inform, empower, and engage patients to stay abreast of the latest in AML care.

Disparities in AML Treatment and Health Outcomes

AML research studies show that Black and Latinx patients experience disparities in AML treatment and health outcomes. Some of the study findings include:

A recent study in Blood Advances showed that Black adolescent and young adult (AYA) patients with AML have higher mortality rates and higher rates of AML recurrence in comparison to white patients. The study compared clinical outcomes between 1983 and 2016 for AYA patients between the ages of 18 and 29. The early mortality rate of Black AYA patients was 16 percent compared to 3 percent for white AYA patients. When examining complete AML remission rates, 66 percent of Black AYA patients experienced complete remission compared to 83 percent of white AYA patients. The authors of the study looked at the research data and determined that delayed diagnosis and treatment in the Black AYA patients as well as genetic differences of AML likely led to the higher mortality rate for this group. In comparison, Black and white patients between the ages of 30 and 39 showed no significant differences in their survival rates.

Lead study author Dr. Karilyn Larkin, a hematologist at the OSUCCC – James, shared, “To our knowledge, this is the first study to examine how molecular genetic alterations contribute to outcomes in young Black people with AML compared with their white counterparts.” Study of genetics is extremely vital in developing new and refined AML treatments, and this is why it’s more important than ever for more Black AYA patients to join clinical trials to create a larger pool of participants to learn from.

Another recent study in Blood showed that Hispanic/Latinx and Black AML patients have higher mortality rates in comparison to white AML patients. The study analyzed several factors in the disparities including health care access, tumor biology, treatment patterns, ICU admission during induction chemotherapy, comorbidities, and structural racism. Neighborhood measures of structural racism were found to be a major predictor of AML mortality rates. The neighborhood measures that were tracked in the study included census tract disadvantage, segregation, and affluence. The study authors concluded that more research must be done to learn the ways that structural racism relates with different AML treatment and predictive factors to impact health outcomes. Then more actions can be taken to help decrease the health disparities for these patient groups.

[ACT]IVATED AML Patient and Expert Tips

Black and Latinx patients who more frequently experience AML disparities are key groups for patient advocacy and empowerment. AML specialists, patients, and patient advocates have pooled some valuable advice through their experiences in treating and living with AML with the goal of improving care for all AML patients. PEN has been fortunate to receive some tips from patient and AML Empowerment Lead Sasha Tanori and AML specialists Dr. Catherine Lai and Dr. Naval Daver toward patient activation and empowerment.

Sasha talked about her AML experience as a Mexican American and the delay in her diagnosis. “You didn’t go out and seek care if you are hurt, you just sucked it up, you went to work, you went to school, you did your job, you took care of your family, and that was it. If you had any type of ailments or illness, you would just rub some Vaseline and do the sana sana and just move on about your day.”

Sasha’s care in a rural healthcare setting also contributed to the delay in her diagnosis. “In my local town they had no clue what was wrong, they didn’t know it was cancer, they didn’t know what was going on. They just kept doing tests after tests after tests, and they’re on blood work, and finally, they were just like, ‘We have no clue, we’ve got to send you somewhere else. You’ve got to get in an ambulance and leave.’”

Dr. Lai and Dr. Daver Tips

Dr. Lai advises patients to take proactive actions in their care. “Ask your physician and your oncologist when you’re talking with them about what all the newest therapies are and what would be specifically the best treatment for their specific leukemia with respect to the different mutations.”

Testing has become a key factor in optimizing treatment for each patient’s specific AML. Dr. Daver also stresses the importance of testing. “Patients, when they transformed what we call secondary AML or MDS, seemed to have a higher predilection for certain high-risk communications such as TP53, and these are best treated with ongoing frontline clinical trials at large academic centers.”

Dr. Daver also explained the importance of genetic mutations currently under study in combination clinical trials. “Patients should be checked for arrangements like MLL rearrangement NPM1 mutation, new fusions as these may be amenable to therapy with the menin inhibitors, there are multiple trials with five different menin inhibitors, single agent trials and also combination trials now ongoing across multiple centers both in the U.S. and ex-U.S.”

The future of AML care is full of hope, and Dr. Lai shared her perspective. “There are a lot of new, exciting therapies that are coming out, and that it’s really novel sequencing strategies and combinations that I think will be the future of AML.”

Clinical trial participation continues its vital role in improving AML care, and Dr. Daver took the opportunity to stress the importance of trials. “Clinical trials are critical, both for the patients themselves to get access to what we call tomorrow’s medicine today as well as potentially to help move the entire field forward.”

[ACT]IVATED AML Program Resources

The [ACT]IVATED AML program series takes a three-part approach to inform, empower, and engage both the overall AML community and AML patient groups who experience health disparities. The series includes the following resources:

  • [ACT]IVATED Expert Interviews with experts Dr. Catherine Lai and Dr. Naval Daver moderated by an AML patient
  • [ACT]IVATED Resource Guide  (en Espanol here)  a downloadable, printable support resource packed with a newly diagnosed patient checklist, expert tips, AML facts, AML mutations, cytogenetic abnormalities, and support resources
  • [ACT]IVATED Patient Vignettes to learn valuable experiences and lessons learned from other AML patients
  • [ACT]IVATED Activity Guide – a downloadable, printable support resource packed with information and activities to educate, empower, and support AML patients and care partners in their journeys through care

Though the underrepresented AML groups of Black and Latinx patients have experienced health and care disparities, experts and patient advocates are taking action to improve care for all. By shining the light on gaps in care, PEN aims to aid in reducing these gaps along with continued research advances and clinical trial participation. AML patients can educate and empower themselves to become more confident and active partners in their care. By doing so, they can make more informed decisions for improved health outcomes. We hope you can continue to use the [ACT]IVATED AML program resources to advance your path to becoming an informed, empowered, and engaged patient. 

Share Your Feedback About [ACT]IVATED AML

12 Tips to Create an Educational and Inspiring Roundup of Healthcare News

/in /by

Staying current with healthcare news is essential for patient advocates. However, the sheer volume of information available can be overwhelming.  It can be challenging to sift through all the noise to find the most relevant and important news.

A healthcare newsletter or roundup can be really helpful here. Resources like these curate the most relevant and impactful healthcare news, usually by topic. They can help your readers stay informed about the latest scientific breakthroughs, research, and policy developments without having to spend hours scouring the internet for information.

With a well-crafted news roundup, you can build trust and credibility within your community, while also positioning yourself as a reliable source of healthcare news. In this post, I’ll share some best practices for creating a regular roundup of healthcare news that educates, informs, and inspires your readers.

1. Gather Your News

Before creating your roundup, you first need to gather the news. Throughout the week, make a note of healthcare stories you come across. It could be breaking news, new research, or policy changes. You can subscribe to Google Alerts to get notified when new articles are published on a specific topic.

2. Prioritize the Most Impactful Stories

With so much information available, it’s essential to be selective and focus on the most significant news stories. Pick three to five stories that are most relevant to your audience. It goes without saying that you should get your news from reputable sources. Whenever you use a source, evaluate it critically to make sure it’s reliable.

Carolyn Thomas, women’s health advocate and author at myheartsisters.org  shares this helpful tip:

“A specific online resource I regularly use is Retraction Watch, a site launched in 2010 under the auspices of the Centre for Scientific Integrity. RW has so far reported almost 25,000 scientific papers that have been retracted by journal editors – the majority due to authors’ scientific misconduct”.  Because I frequently cite emerging medical research and/or authors, it’s important to double-check that the studies have not been retracted, nor their authors discredited.”

3. Write a Summary

A concise summary explains what the story is about and why it matters. It should highlight the key points of each news item while providing context for people who are unfamiliar with it. In addition to statistics and quotes, summaries can include relevant quotes from experts and officials.

4. Categorize Based on Topic

Make it easier for readers to navigate your content by grouping news items by topic. Some common categories for healthcare news roundups are medical research, policy changes, technological advancements, and public health updates.

5. Stick To A Standard Format

Your roundup will be easier to navigate if you follow a standard structure. This can include including a headline, a concise summary, and a link to the original article for each story. By using a uniform layout, your readers will quickly become accustomed to your roundup’s format, making it more accessible and easier to digest

6. Link To The Original Source

Make sure to link to the original source of your news item. Readers can click on the links to read the full article if they want to know more. Seeing where the information comes from allows readers to assess the credibility of the source for themselves, so the roundup is transparent and credible. Don’t forget to check the links and make sure they go to relevant articles.

7. Set a Regular Publishing Schedule

Establish a regular publishing schedule for your roundup, such as weekly or bi-weekly. In this way, your readers will know when to expect your round-up and know they’re getting the most current information.

8. Include Visuals

Adding images to your roundup can make it more visually appealing and engaging. Select high-quality images that add value and are relevant to your content. Infographics and charts can be particularly effective at presenting statistical information, while video interviews can provide additional context. Additionally, visuals can increase the shareability of your content on social media platforms, helping to expand your reach and engagement with your audience.

9. Share On A Variety Of Platforms

Sharing your roundup on a variety of platforms is an effective way to reach a wider audience and increase engagement. Aside from promoting it on social media, post it on healthcare forums or discussion boards.  Additionally, consider sending it out in a newsletter or email blast to your subscribers.

10. Follow Up On Important Stories

Healthcare is a field that’s constantly evolving, so new developments can happen at any time. By following up on important stories, readers know they will get the most relevant and up-to-date information from you. When following up on stories, it’s important to provide context for readers who may not have read the previous roundup and to link back to any relevant content.

11. Encourage Reader Engagement

Create a sense of community by encouraging readers to leave comments and share their thoughts. You can do this by asking readers to share their thoughts, opinions, and experiences at the end of the round-up. It is also good to keep an eye on comments and respond so that a discussion can be facilitated and questions can be answered. Also, include social media share buttons on the post so readers can share it with their friends, increasing engagement and visibility. By encouraging reader engagement, you can create a more dynamic and interactive healthcare news roundup that is more likely to be shared and talked about.

12. Establishing Trust Through Consistency

This last tip comes from Terri Coutee, founder of DiepCFoundation.org, a non-profit organization that focuses on providing education, research, and support for patients who have undergone breast reconstruction surgery using DIEP flap procedures.

“Patient advocates often take on the role of curating content for a particular community. It is important to establish trust within a community by reporting consistently and with care and integrity. When you express interest in keeping a community updated on the latest evidence-based information, they count on you and look for new content. It is important to report accurately while at the same time understanding your reader and weaving skills of caring and compassion into your content. Establishing trust through consistency brings access to articles and information others may not seek on their own. You become their source of trusted information.”

By following the tips and best practices outlined in this post, you can curate the most relevant and impactful news stories while providing valuable context and insights for your readers. Your efforts will not only keep your audience informed and educated but also demonstrate your dedication and commitment to patient advocacy.

Patient Profile: Eva Grayzel

/in , , /by

When stage IV squamous cell carcinoma survivor Eva Grayzel shares her story, you can tell that she has a zeal for life. She survived  oral cancer and works as a performance artist and speaker. Diagnosed at age 33, she was told that she had a 15 percent chance of survival. Eva’s journey started with a sore on the side of her tongue that wouldn’t resolve .

About eight weeks after noticing the sore, Eva saw an oral surgeon who examined her tongue. She complained about the pain, and her oral surgeon said, “if it bothers you so much, we can take it off.” She agreed. Two days later, Eva felt fine, and two weeks later, she received an assuring call from the surgeon’s office to inform her that her biopsy was negative. She was confused and wondered if there was a mistake of some sort. “I literally thought, ‘What on earth could they be looking for in a biopsy of the tongue?’ The receptionist told Eva she had nothing to worry about. Two years passed, and she had no obvious symptoms. But early stage oral cancer often goes without symptoms. Two years later, another sore developed on her tongue over the previous biopsy site. 

Eva returned to the doctor after eight weeks, and they diagnosed her with hyperkeratosis, which is basically a callus. “They treated me for trauma for nine months; they had my teeth shaved down; they gave me gels and rinses. It was a nightmare.” Her doctors also told her that the amount of speaking in her work exacerbated her symptoms, and she regrets that she didn’t know more about oral cancer at that time. Eventually, a second opinion brought her the correct diagnosis of squamous cell carcinoma, which was treated with surgery and radiation and followed up with reconstructive surgeries.

Throughout her cancer journey, Eva has endured a lot. She had one-third of her tongue removed, a partial tongue reconstruction from arm and leg tissue, a modified radical neck dissection, and a maximum dose of radiation therapy. “It was most definitely the hardest thing I’ve ever been through during treatment. I planned my funeral and didn’t think I was going to survive.” Through an extraordinarily successful treatment plan, Eva not only survived but also regained her ability to speak clearly. With a second chance at life, she couldn’t let the same thing happen to someone else.

Radiation to the head and neck is the most difficult part of the body to tolerate therapy. “What I learned is that you’re stronger than you think you are. You have more strength than you know you do. I really didn’t think I could get through this, and somehow I pulled through.”

Eva has learned some things and has some advice for survivors. “There’s always hope, and hope is different to different people. For some it might be no pain, for others it might be living six months to make it to their kid’s graduation or wedding. Only you know what’s right for you.” 

She has self-care advice for care partners as well, “You need to take care of yourselves so that you are renewed, refreshed, and at your best to take care of the person you’re caring for. When you’re tired, rest. When you need a break, take it. Go out for lunch with a friend or take a walk. Do what you need to do for yourself, so you can be the best caregiver you can be.” 

For family and friends who want to help but don’t know what to say, Eva advises asking yes/no questions: “I’m making chicken for dinner, can I make you some? I’m taking the children to the park, can I take yours? I’m going to the market, can I pick up anything for you” On a visit, empower the patient by asking them how they want to spend the time, instead of making the visit about your agenda. Bring with you what you think they may enjoy; polish their nails, massage their feet, read the sermon of the week, bring a game, a joke book….

Eva has lessons learned about oral health. “I would say as an oral cancer survivor, I’ve learned a lot about oral health. And this goes for all cancer survivors, the health of your mouth is the window to the health of your full body. So, if your body is fighting cancer and even recovering from treatment, keeping your mouth in its cleanest state will serve you well.” 

Even for those who have adult children, Eva is an advocate for telling your kids the truth. Patients might think grown children are too busy with their own responsibilities, but she advises talking to them about your cancer, because it’s an opportunity to teach them about what it means to be a family. If you choose to hide a diagnosis from children, you are promoting secrecy and dishonesty, you risk a lot of anger if they find out you withheld the information, and mostly, it’s an opportunity to teach children how to overcome life’s challenges.  Life is in balance. When tragedy strikes, notice the opposing forces of gratitude and hope.  

Every cancer survivor should get an oral cancer screening at their dental checkup. If you don’t know whether you receive a screening, visit sixstepscreening.org. “Or simply tell your dentist, ‘I want an oral cancer screening. It’s the standard of care, the American Dental Association says that everybody should be getting the screening at least once a year at a dental checkup.’”

After surgery and reconstruction, Eva can swallow normally but can’t feel or taste in the area where her cancer was. She can only chew on the right side of her mouth but still feels grateful. “The body is amazing. It adapts in a phenomenal way, so whatever you lose, however your body changes, it will learn to adapt to work for you. It takes time, it takes patience. But there’s hope for a really good life after cancer, but the mind is part of it, and also taking good care of yourself is really important so that you can be the best person you can be.”

Eva’s children were 5 and 7 when she endured treatment for cancer. To help children like her own cope with a diagnosis in the family,  she wrote two children’s books to promote dialogue between adults and children and to help them cope with their feelings and fears. 

Eva speaks to oral cancer survivors internationally and provides hope. If you know someone who has been recently diagnosed, don’t hesitate to reach out to Eva: eva@evagrayzel.com

#patientchat Highlights – Patient Advocacy: Boosting Online Presence

/in , , /by

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

Top Tweets

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

 

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

Full Transcript

Three Factors That Determine Myeloma Treatment Decisions

/in , , , , , , /by

What are the key factors under consideration to determine a multiple myeloma treatment approach? In “Key Factors That Guide Myeloma Treatment Decisions” program, expert Dr. Joshua Richter from Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai explains how to determine optimal approaches.

 1. Disease-Related Factors

The growth rate of myeloma – whether fast-growing or slow-growing – is a key factor in treatment decisions. Treatment in pill form may be an option for slow-growing myeloma, while intravenous or other treatment methods may be necessary to treat fast-growing myeloma. 

2. Treatment-Related Factors

A myeloma specialist will also take treatment-related factors into account. Some of these considerations will include issues like whether a patient stopped responding – or was refractory – to another treatment. Or if a patient experienced treatment side effects that couldn’t be lessened enough through adjusting dosage or by other means, that should be considered as well.

3. Patient-Related Factors

Myeloma treatment options must also take other patient health concerns into account. Considerations like physical fitness, kidney health, heart health, and medical problems like high blood pressure and diabetes must be considered. In addition, the patient’s myeloma symptoms must be weighed in the analysis for treatment decisions.

Myeloma specialists have some key factors to consider in narrowing down an optimal treatment approach. If you’d like to learn more about multiple myeloma, check out our multiple myeloma information.

Arranging Comprehensive End-of-Life Care for Elders with Cancer

/in , /by

Cancer is a disease no one wants to face. But whether you are the one with cancer or caring for a loved one, contending with a cancer diagnosis inevitably takes a toll. Sometimes, the outcome does not come in the form of remission. Sometimes, it is greeting the new day or taking the next breath.

For some, the outcome is making one’s final days comfortable, meaningful, and peaceful. The reality is that all of us will someday transition out of this life and, for some, cancer will be the reason.

If you or someone you love is facing a terminal cancer diagnosis, planning for end-of-life care makes it possible to meet this last stage of the disease with the dignity, comfort, and peace of mind you and your loved ones deserve.

The Benefits of Remaining at Home

Many people faced with a terminal diagnosis find security and comfort in the ability to remain in their own homes. However, there are some steps that should be taken to ensure that the home is safe and comfortable for someone with an advanced stage of cancer.

Many of the same steps that can be taken to prepare a home for a senior can be used to ensure accessibility for those with cancer. This would include, for example, securing down rugs, removing other obstacles that may pose a fall risk, installing grab bars in bathrooms, and retrofitting doorways and shower stalls for wheelchair access.

In addition to ensuring that the home is safe, secure, and comfortable, it’s also helpful to recruit in-home caregivers to address patients’ evolving needs. For example, home-based caregivers can run errands, help patients with household chores and personal care, including bathing and dressing, and provide much-needed companionship and support.

In-home caregivers can also greatly amplify the benefits of enabling patients to remain at home when nearing the end of life by making it possible for them to remain with friends, family, and their beloved companion animals.

There are few things more comforting than the love of a family pet, and for those facing aggressive cancer, the benefits of simply stroking a purring feline or cuddling with a fluffy puppy cannot be overstated. Companion animals have been shown to reduce blood pressure and heart rate, alleviate depression and anxiety, and promote an overall sense of happiness and well-being. And there is perhaps nothing more precious or more important when you are facing the end of your life than that.

Enlisting Hospice and Palliative Care

For a patient confronting terminal cancer, the love and care of family and friends can be an incomparable source of support, comfort, and companionship. Nevertheless, there are times when a patient’s needs surpass the capabilities of non-professional caregivers.

In times like this, enlisting the services of skilled care providers can mean all the difference to a patient’s comfort and overall quality of life. Hospice care services, for example, are by no means limited to the final stages of a patient’s life.

Hospice care can be enlisted relatively early on following a terminal diagnosis. Similar to palliative care, these skilled nurses and clinicians can offer in-home services to help with disease management and pain control; supporting patients’ physical, mental, and emotional well-being to the greatest extent possible and for as long as possible.

Financial Planning

Anyone who has faced a cancer diagnosis knows that, even with the best medical insurance, cancer can be an obscenely expensive disease. Financial stress relating to cancer treatments can be devastating. Patients who are nearing the end of their lives may experience extreme distress over the perceived financial burden they are leaving their loved one.

This is why effective financial planning is an essential aspect of comprehensive end-of-life care. As profound as the financial weight of cancer care may be for families, there is a range of resources available to help fund treatment and travel, including grants and stipends made available through the American Cancer Society and related organizations. In addition, medical debt forgiveness and low or no-interest repayment plans are available through many health systems.

Proactively pursuing a strong financial plan when you or someone you love is facing the end stages of a terminal diagnosis can provide immense peace of mind, allowing you and your loved ones to focus on what matters most: building memories and cherishing your time together.

The Takeaway

Cancer is cruel and sometimes the best outcome is not allowing it to rob you or your loved one of peace and joy in the final stages of life. Creating a comprehensive end-of-life plan for yourself or someone you love is a difficult, highly emotional journey. Nevertheless, being proactive regarding end-of-life care is an important and empowering act — one that ensures that you and your loved ones find peace, comfort, and security in this final stage of life.

Top Two Reasons Why CLL Patients Should Participate in a Clinical Trial

/in , , , , , /by

Why exactly should a chronic lymphocytic leukemia (CLL) patient think about joining a clinical trial? In In the “Why Should CLL Patients Consider a Clinical Trial?” program, expert Dr. Adam Kittai from The Ohio State University Comprehensive Cancer Center – The James explains the motivation of clinical trials and the benefits CLL patients may receive from clinical trials. 

1. Improve Future CLL Treatments

Clinical trials examine the benefits of a specific treatment for a specific cancer and cancer stage. If you or your loved one participates in a clinical trial, there can be a double benefit to participation. The data gathered from clinical trials assists researchers in improving future CLL treatments for the patient who participates in addition to other CLL patients. Clinical trials can often have underrepresentation by BlPOC patient groups, and it is important for these groups to be represented in trials in order to develop the most refined treatments for all patient races, ethnicities, and genders.

2. Gain Access to Unavailable Therapies

In addition to improved treatments, clinical trial participation has other patient benefits as well. If you or a loved one participates in a clinical trial, the patient gains access to treatments or therapies that may not be accessible in another way. Clinical trials sometimes use different combinations of treatments that haven’t been used previously for a specific stage or type of cancer. Or clinical trials may offer access to a cutting-edge therapy that may ultimately be both more effective while also causing fewer side effects, which could result in a major win-win for patients.

By participating in CLL clinical trials, patients can help improve future CLL treatments for themselves as well as for others. If you have additional questions about clinical trials, ask your doctor or other healthcare provider. If they don’t have information about trials for your specific cancer and stage, they can check with specialists who would more familiarity. You can also find a database of clinical trials at clinicaltrials.gov.

#patientchat Highlights – Let’s Talk Toxic Positivity

/in , , /by

Last week we hosted a “Let’s Talk Toxic Positivity” Empowered #patientchat on Twitter. Take a look at the top tweets and full transcript from the chat.

Top Tweets

 Toxic positivity can cause you to minimize the feelings of others or yourself. What are other signs of toxic positivity and how else can it be harmful?

toxic positivity #patientchat

How can you avoid toxic positivity in yourself and towards others?

Toxic Positivity #patientchat

Closing Thoughts

Toxic Positivity #patientchat

Full Transcript

Elevate Your Online Presence:

/in /by

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

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

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

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

January

Set SMART Social Media Goals

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

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

Here’s how to make a goal SMART:

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

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

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

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

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

February

Perfect Your Social Profiles

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

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

March

Conduct a Social Media Audit

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

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

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

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

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

April

Conduct a Content Audit

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

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

 Here are the steps to conduct a content audit:

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

May

Create a Content Calendar

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

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

June

Repurpose Your Content

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

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

Here are a few ways to repurpose content:

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

July

Create Visual Impact

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

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

These are a few ideas to get you started:

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

For more tips read: 

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

August

Host a Live Virtual Event

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

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

Tips for hosting a successful virtual event:

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

September

Build Your Authority on LinkedIn

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

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

You can learn more here:

Patient Advocacy: How To Optimize Your LinkedIn Profile

Patient Advocacy: How To Boost Your Visibility on LinkedIn

October

Increase Twitter Engagement

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

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

Follow these steps to get the most out of Twitter:

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

More tips can be found here:

Patient Advocacy: How To Increase Twitter Engagement

November

Try Some New Tools

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

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

Check out the list at:

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

December

Evaluate Your Progress

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

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

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

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

Here’s to your social media success!