Last week, we hosted an Empowered #patientchat on Twitter titled Patient Access: Let’s Talk Health Care Technology. The #patientchat community came together for an engaging discussion and shared what was their mind.
Cancer Patient and Care Partner Tips for Keeping Busy During Pandemic from Patient Empowerment Network on Vimeo.
MPN managers Summer and Jeff share tips for keeping busy during a crisis. They both share how exercise, scrapbooking, and zoom improvisational theater has kept them occupied.
Summer, who lives with myelofibrosis, shares her experience with getting her regular blood draw and some of the new procedures in place allowing her visit to be smooth.
How are you keeping busy? Let Summer and Jeff know: question@powerfulpatients.org
Are you looking for a way to boost your advocacy activities online?
One of the best ways to do this is to create a blog. Blogging shows your commitment and passion for your cause and because a blog is interactive, it’s also an extremely effective way to build a community and engage more people in your cause.
If you are brand new to blogging, and not quite sure how to start a blog, this step-by-step guide will get you up and running.
Many of us who blog start out with great intentions of writing regularly, but over time our inspiration well can run dry. Creating a blog is relatively easy; the challenge lies in consistently creating fresh content. Cancer blogger, Nancy Stordahl (@nancyspoint) recommends a consistent blogging schedule if you want to develop a loyal readership. “This takes commitment,” she explains, “which means posting on a regular schedule that works for you. This might be weekly, every other week or monthly. This way readers know what to expect, plus it keeps you focused. I post weekly (usually the same day) because that’s what works for me. Consistency is key.”
In this article, I want to share with you a month’s worth of things to write about. Whether you’re new to blogging and looking for ideas to get started, or you’ve been blogging for a while but your writing has stalled, the following tips are designed to kick-start your writing efforts. Commit to consistency by writing one blog post a week for the next month with these topic ideas as your guide.
You might like to start by asking your readers what kind of questions they have that you can answer for them. You could use Instagram, Twitter or Facebook to do this or you could search on a question and answer platform like Quora. On Quora you can ask a question about your topic or simply do a search using your topic keyword to find what people are asking about that topic. Make a list of those questions which you feel you could write about. When you have written a blog post on the topic, go back into Quora and answer a question related to the topic. You can include a link to your post in your answer.
Recycling content simply means taking one piece of content and finding a new way to create content around it. Identify your most popular content through your blog analytics tool. Now brainstorm some ways in which you can take this content and turn into a fresh post. Can you turn it into a video or audio post? Are there any new research or treatment updates you can add since you first published this post? Can you get creative and create an infographic or develop a downloadable checklist using the original post as a starting point? You’ve already spent time and effort in creating your content, now spend a little more time to maximize that effort.
One of the things I remember most when I was a newly diagnosed patient was how mystifying the world of cancer was for me. I had to learn a whole new language consisting of unknown medical terms and scientific jargon to be able to understand my diagnosis. Make the process less mystifying for newly diagnosed patients by putting together a useful list of medical and scientific terms (as I did with this Clinical Trials Jargon Buster) and publishing it on your blog.
Have you been to a conference where you learned about new medical research? Or read about the latest research in a medical journal? Let your readers know about it through your blog by providing a summary of the key findings and translating the information into easy to understand language for other patients.
There are several online tools you can use to create a readers’ poll. If you have a WordPress.com site, then you’ve already got Polldaddy polls built in. You can create, manage, and see results for all of your polls directly in your WordPress.com dashboard. If you use a self-hosted WordPress site, install the Polldaddy WordPress.org plugin. Once you’ve collected your poll data, publish a follow-up post with your findings.
What’s it like to live with your condition on a day-by-day basis? What insights can you share to help others understand what a typical day is like for you and patients like you? Can you share helpful tips to cope with common everyday difficulties? Do you have advice for how family and friends can help you navigate your illness? As a person with lived experience you are in a unique position to shed light on what it’s like to cope with your illness by writing about it on your blog.
Have you recently spoken at an event? Did you use slides in your presentation? Did you know you can upload your slide-decks directly to a platform called SlideShare? This is a great way to develop a portfolio of your speaking work and showcase it on your blog by simply inserting the embed code provided by SlideShare.
Inviting another patient or healthcare professional you admire to write for you, not only expands your blog’s reach and readership, but adds a valuable new perspective to your site. For example, each week, Nancy Stordahl invites a different metastatic breast cancer patient to share their story on her blog for her regular #MetsMonday post.
Creating regular recurring content, like Nancy does with #MetsMonday, is another excellent way to keep consistent with your content creation. Another suggestion is to create a round-up post each week – this could be a round-up of the latest research or a link to useful resources and articles you think would be helpful to share with your readers. Pick a day for this and stick to that day each week so readers know what they can consistently expect from you.
This final tip is one of the easiest ways to create content on your blog that you can use on a regular basis. For example a post on how to survive the holiday season, or healthy eating during the holidays is a post you can use year after year. Add the dates of awareness days, such as World Cancer Day, to your calendar as a reminder to create content around these events.
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. A board member of the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide, Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
Just in time for summer, there are a couple of compelling reminders of why we should all be exercising more. There’s also a new map for breast cancer, and a new vaccine that we’ve all been hoping for. No, not the one for Covid-19, but this one is equally important. Oh, and, speaking of infectious diseases, new research shows that getting an infectious disease could very possibly lead to cancer.
Researchers have found a link between infectious diseases and the development of cancer, reports medicalnewstoday.com. In a study that looked at data from more than 50,000 people over a period of seven years, researchers determined that people who had had an infectious disease, such as influenza, pneumonia, gastroenteritis, and hepatitis, had a higher risk of developing a later cancer. In addition, different infections were linked to different forms of cancer. For example, people who had pneumonia were more likely to later develop stomach cancer. More research needs to be done to fully understand the connection but, knowing that there is a link between some diseases and future cancer occurrence could help in developing better cancer screenings and diagnostic testing. It could also help us all work harder at staying as healthy as possible. Learn more here.
Like it or not, a great way to actively try to stay healthy is through exercise. Research continues to show that exercise is beneficial for cancer treatment and prevention. More specifically, a new study shows that exercise may help prevent liver cancer, reports medicalnewstoday.com. This is particularly good news because liver cancer is on the rise and it is deadly. The general five-year survival rate is 18 percent. Men are at a higher risk of developing liver cancer, and it is the fastest growing cause of cancer death for men in the United States. The study, performed on mice, found that exercise reduced the occurrence of liver cancer. While all the mice in the study were obese, only 15 percent of the mice who exercised developed liver cancer. Of the mice that didn’t exercise, 64 percent developed liver cancer. In addition to establishing the link between exercise and liver health, the researchers also discovered molecular reasons why exercise may prevent liver cancer. They found that exercise switched off a stress-activated protein that has been found to support tumor development and turned on a gene that has been found to inhibit the growth of cancer cells. Hop on the treadmill and learn more about the study here.
Exercise can not only prevent cancer, it can also increase your chance of survival. A new study shows that exercise increases the length of survival for women with high-risk breast cancers, reports cancer.gov. High-risk breast cancers are more likely to recur or spread, but the study showed that women who were physically active were more likely to live longer and were less likely to have their cancer recur. While those who exercised the most and the most often showed a greater reduction in rates of recurrence and chance of death, there were positive outcomes for those who exercised during any stage of their diagnosis and treatment. Learn more about the positive effect exercise can have on breast cancer survival rates here.
There’s encouraging news in breast cancer prevention as well. A new guide has been developed to show how environmental toxins can lead to breast cancer, reports medicalxpress.com. Since only five to ten percent of breast cancers are a result of high-risk, inherited gene mutations, researchers wanted to better understand the role toxic chemicals play in the development of breast cancer. Using radiation exposure as a model, researchers identified the sequential biological changes that occur through exposure to toxic chemicals. The information was used to create a map highlighting the various ways toxins can lead to breast cancer. Researchers hope their map will be used in the development and regulation of chemicals. Knowing which chemicals can trigger breast cancer could help in reducing the number of breast cancer cases. More information can be found here.
Of course, the ultimate form of cancer prevention might be a vaccine and researchers are getting closer to making that a reality. A new and promising cancer vaccine has been developed, reports techtimes.com and medicalxpress.com. The vaccine was developed using microcapsules and when the vaccine is injected, the microcapsules, which have a self-healing component, activate the immune system, and inhibit tumor development. The vaccine showed effectiveness against different types of tumors including melanoma, breast cancer, and lymphoma. More information about how the vaccine was developed and how it works in the body can be found here and here.
It’s nice to know that the scientists are out there doing the research and working on creating important vaccines that give us hope for a healthier tomorrow, but it’s also nice to know that simply by taking a walk or a run or a bike ride and by washing our hands or wearing a mask or keeping our distance, we are all taking important steps toward being empowered patients today.
Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.
Last week, we hosted our first ever Virtual Empowered #patientchat. The Virtual Empowered #patientchat was a moderated 45-minute conversation conducted online via Zoom and Facebook Live along with a lively discussion on Twitter. Below you will find the highlights from the online events and highlights from the conversation on Twitter.
“I was experiencing some symptoms of COVID and I made an appointment with my PCP. We went over the symptoms and I tested negative for the antibodies, but I didn’t have to go in at the time when it was crowded.” – Mel
“I have always felt that we have under-utilized telemedicine. There is so much that can be done via a telemedicine visit.” – Dr. Rochester
“One of the best things I’ve seen from telemedicine is for a lot of people with physical ability issues or anything like that, or a really bad migraine or if you have a chronic illness that fluctuates every day. What if you make an appointment in December and it comes up a couple months later and you don’t feel good that day. You can still have the access to your provider and talk through any concerns or even potentially get help for a flare or things like that.” – Alexa
“Be kind to yourself. Extend compassion to others. Find an emotional accountability partner. Write down a list of loved ones whenever you think of them so you remind yourself to check in later.” – Honora
It is normal to feel anxiety right now. Mel recommends finding the techniques that manage it best for you like doing some daily exercise to get your vitamin D. Stay focused: it’s a marathon not a sprint.
“Reach out to others. You can physically distance without sociallydistancing. Pick up the phone, call someone, do a zoom call or facetime or skype, but don’t let these trying times prevent you from staying connected with your community and even from creating a brand new community.” – Dr. Rochester
Each year, over 40,000 veterans are diagnosed with cancer in the US. Many veterans of the Iraq and Afghanistan wars were exposed to a variety of hazardous substances, from depleted uranium to chemical warfare agents. This history of toxic substance exposure has left a legacy of health complications and may explain the worrying increase in cancer rates among veterans in recent years.
For veterans lacking insurance, cancer can be particularly distressing, adding financial worries to the considerable health concerns of a diagnosis. Veterans diagnosed with cancer during or after their military service may be entitled to Department of Veteran’s Affairs (VA) healthcare benefits if they are discharged under any condition other than dishonorable, regardless of the time since active service. VA healthcare benefits will cover health exams as well as specialized inpatient care. Furthermore, these benefits are available regardless of what insurance a veteran has, be it Medicare, Medicaid, private or none at all.
To receive maximum disability compensation, a disabled veteran must earn a 100% VA Disability rating. However, because of the way the rating is calculated, this can be very difficult to achieve. Veterans affected by cancer may qualify for VA disability benefits, and in cases where the VA determines the illness is service-related, they may temporarily receive a disability rating of 100% for as long as the cancer is active.
Agent Orange, a herbicide deployed in Vietnam, has been linked to Hodgkin’s lymphoma and leukemia in veterans and civilians exposed to it during the Vietnam war. As a result, veterans deployed to Vietnam may qualify for VA disability benefits under presumptive conditions. Presumptive conditions are cases in which the VA presumes a disability or illness is caused by military service and for which it decides to award benefits.
Beyond the VA, there are a number of charitable organizations offering assistance to veterans diagnosed with cancer and their families . The Fisher House Foundation offers a no-cost network of comfort homes located near major military and VA medical centers across America to the families of veterans receiving treatment. This is especially important in cases where veterans must travel long distances for treatment at VA or specialist medical centers, allowing their families to be with them every step of the way. For veterans looking for guidance or aid when applying for benefits, Disabled American Veterans (DAV) offers their services free of charge, helping veterans file their claims and providing vehicles for those in need of transport to medical facilities.
The decade following the Iraq and Afghanistan wars saw an unprecedented increase in the number of cancer cases among armed forces veterans. While the VA offers benefits and services to aid veterans living with this disease, in many cases it simply isn’t enough. For veterans in this situation, there exists a strong framework of charitable organizations ready and willing to pick up the slack and aid them in the fight.
“There’s something to be said for not being a patient,” one of my doctors said.
“It feels so good,” I said during our telemedicine appointment, “to be away from the hospital for eight weeks in a row.” It’s the longest hospital break I’ve had since being diagnosed with cancer last summer. Before mid-March, I’d been to four to ten medical appointments every month. Being a cancer patient felt like a full or half time job. Because of the pandemic, I’m now treated by my oncology team from the comfort of my own home.
I don’t miss shuffling from room to room or floor to floor and sitting in waiting rooms for hours. I love not needing to ask for rides or take cabs or public transportation while my white counts are low. I don’t miss being poked, prodded, weighed, and measured or having my vital signs documented in hallways while removing my coat, wig, and shoes. I love not having to roll up sleeves for the vials of blood to be drawn or to pull down my pants so the doctor can put a stethoscope to my belly and bowels.
Because of the increased health risks at hospitals, new access to telemedicine, and flexibility around clinical trial protocols, I can see my oncologist, face to face, through Zoom. Questions can be answered ,via email, a text, or a phone call. Clinical trial drugs are overnighted to me.
I enjoy the time and money I’m saving and the convenience of getting all care from home. But I also miss the real-life hugs, handshakes, and high fives that used to come with seeing the clinical team in person.
Many cancer patients are losing jobs, homes, loved ones, and health insurance. For those newly diagnosed with cancer, surgery, scans, and treatments must be done all alone. Those in active treatment are often terrified of catching COVID-19 while immunocompromised. Others are afraid hospital visits will expose our family members to COVID.
It’s startling how much hospital protocols and procedures have changed. When I look back or think about what comes next, I worry. I hope the pictures and stories below capture what it’s like to be an oncology patient and how swift and severe the COVID-related changes over the last few months have been and continue to be.
My partner drove me to the hospital on the morning of my surgery. We checked in before 6a.m. and waited, with others, in the lobby.
Eventually, we were called up and walked, single file, through halls by someone escorting us to the pre-op area. Each one of us was assigned a bed (pictured) and a nurse (not pictured). The photo is of the pre-op area.
My partner got to visit me before surgery. He was there when the surgeon, nurses, fellows, and anesthesiology came to prepare me for surgery.
If surgery were scheduled today, my partner wouldn’t be able to stay with me.
This is me in post-op. My partner took this photo on his phone and was able to share it with my family and friends to let them know I made it through surgery. They were worried because it went hours longer than expected.
In the photo, I’m high as a kite and happy to be alive. I’ve just downed the iced coffee my partner snuck in (as planned and with permission from the nurse). In the photo, I am still in shock that my surgery was five hours long, it’s afternoon, and that cancer was found. I don’t yet know how serious my diagnosis will be. That will come twelve hours after surgery when the surgeon explains my cyst was actually a cantaloupe-sized cancerous tumor, aggressive, advanced, and usually chronic. Mercifully, my partner is with me as she explains that she had to do a total hysterectomy, removing ovaries, fallopian tubes, lymph nodes, and my omentum and lays out the timeline for chemotherapy.
My partner held my hand and crawled into my bed to hold me while I sobbed. But he provided far more than essential emotional support. He helped me stand and keep my balance, helped me get to my first trip to and from the restroom. He was there to advocate for me when I dozed off and to get the nurse when my call button went unanswered. He was the one who provided my loved ones with updates. He was the one who snuck my favorite health foods to help “wake up” my digestion enough to allow me to be discharged after one day.
It’s hard to imagine what that traumatic and challenging day would have been without him. I can’t imagine recovering from major surgery and receiving such devastating news alone but it’s what many diagnosed with cancer during COVID now endure.
Going home after surgery is comforting and scary. My right leg was giving out from under me because my obturator nerve “got heat” during my surgery. I had trouble standing in the shower or lifting my right leg onto the bed or into a car. I had extensive swelling and bruising on my right side and pelvic area and had a bit of a reaction to the bandage tape. I didn’t know what was normal. And after a phone call to the hospital, I was asked to come back in for a check-up.
Today, I’d either have had a telemedicine appointment or need to decide if an in-person visit with a medical professional is worth possible exposure to COVID. These are the types of decisions we are all facing but it’s especially scary when one is already vulnerable and fighting for life.
Getting chemotherapy infusions is time-consuming, scary, and intense. Everyone reacts differently to the many drugs given with chemotherapy (such as Benadryl, steroids, Pepcid, and anti nausea drugs). Everyone reacts differently to the chemotherapy, marked hazardous, that require the nurse to wear gloves, masks, and protective clothing to prevent contact in case of accidental spills. Some drugs make you sleepy, and parts of your body numb. Others make you feel amped, wired, and agitated.
Some cause nauseous, headaches, or allergic reactions, immediately and others not for days or weeks.
Having a chemo-buddy like Beth was a huge help. She was the one who asked for window seats in the infusion center, who made sure I got warm blankets. She massaged my feet and reminded me to listen to guided imagery. She sat with me in waiting rooms as we waited for my labs to come back to make sure my white and red blood counts weren’t too low, my liver counts not too high, and that the chemo was making my tumor marker scores go down.
She was the one who touched the elevator buttons for me, the one who walked me to the car and handed me off to my fiancé at the end of the day. She was the one who got me water, coffee, or snacks.
I felt safer whenever I had a chemo buddy with me and Beth would also take notes and make sure I didn’t skip any of my questions just because the oncologist seemed in a hurry.
Beth was not only a source of support but provided an extra pair of hands to plug in my iPhone, to hold my bags, food, or books. She was the person I could share tears, laughs, and heart to hearts with. She listened as I worried about my daughter, as I struggled to balance work and parenting.
She was there to support me as I talked endlessly about healthy eating, fasting, supplements, and complementary medicine. But the greatest comfort of all was knowing she would be there if passed out, fell, or had an allergic reaction to all the treatment drugs. At my last treatment, I was alone and Beth at home. It was hard.
Social distancing during treatment is hard even for introverts like me who need a lot of alone time. When physically weak, short visits with loved ones who bring food, hugs, and gifts are life-affirming and life-changing.
Those who show up do so for cancer patients as well as our families. They help us to take care of our kids, partners, pets, plants, and housework. They help us manage as we face fear and loss, whether losing jobs or body parts, or hair and having few or no visits is hard. Today, barber shops where we might get our heads shaved are closed.
The wig shops and stores we go to for hats and head coverings are often closed.
We can’t go out to eat with loved ones, or do yoga on good days. We can’t have parties for our loved ones to create normalcy or new rituals. We can no longer go out in the public either. We can’t do things such as sitting alone writing in a journal and drinking a smoothie when swallowing food is too hard.
We can’t travel to remind ourselves there is still beauty and magic in the world and to enjoy our loved ones and lives as much as possible.
These are not all small things or luxuries in coping with the brutal effects of cancer treatment and chemotherapy. They can change the cancer and recovery experience and all that helps keep us strong.
We need others when we are sick. We might need help standing, walking, or eating. We might need rides, treatments, or blood or platelet transfusions. We might need help articulating symptoms and side effects. To have fewer in-person visits when so medically vulnerable can be anxiety-producing.
We also have less in-person celebrations with our clinical teams when we finish a line of chemotherapy or have a cancer-free scan. We no longer have informal pet therapy either with the cheerful and cuddly animals of friends, family, and neighbors.
I can’t imagine going to chemo alone, depleted, and with low white counts.
The increased risks, vulnerabilities, and lack of human company and tactile comforts feels indescribably epic.
My immunotherapy infusions (or placebo) have been put on hold for the past two cycles. I asked if I could remain in my clinical trial if I refused to come to the hospital for treatment until the risk of getting COVID is decreased. Luckily, I’ve been allowed to stay home. Clinical trial protocols, in general, are much more flexible as a result of the pandemic. My medication (or placebo pills) are mailed to me. Before March, in-person prescription filling was required and always took hours.
However, I’ve been weighing what I’ll do if I have to weigh virus-related risks against the possible benefits of clinical trial treatment. If I’m required to be treated at the hospital I may drop out of the trial. This is one of the many difficult decisions oncology patients often face but it’s made more complicated because of the coronavirus. .
The losses, challenges, and changes are worrisome and real. That said, not all the COVID-related changes for oncology patients are bad. The whole world is wearing masks, staying home, socially distancing, and worrying about health, wellness, death, and dying.
Instead of being stared at when I wear a mask, I’m now in good company, because much of the world is doing the same. Many of us are consumed with health issues and worried about health, mortality, and immune functioning.
To be reminded, once again, that health and life aren’t guaranteed to anyone, that we are all facing mortality, and must appreciate every day we have, is strangely comforting. While I’m reminded of our collective vulnerability, to hear health concerns, risks, and challenges confronted as the world and nation’s collective concern is a reminder that none of us are being personally picked on for failing at being human, we are just, in the end, all excruciatingly fragile and mortal.
“I feel like I’ve been slow-dancing with death since last summer but now I feel less alone,” I told my friend Kathy. “It’s like others have joined you on the dance floor,” Kathy said. “Yes,” I said, which once again makes me feel like a person rather than a patient and there’s something to be said about not being a patient….
When not recovering or coping with her recent ovarian cancer diagnosis, chemo brain, and the other treatment-related side effects, Christine “Cissy” White works as Community Manager of the Parenting with ACEs community on ACEs Connection and blogs at www.healwritenow.com. White has been published in The Boston Globe, Spirituality and Health, Ms. Magazine, The Mighty, To Write Love on Her Arms, Elephant Journal, the Center for Health Journalism, and ACEs Too High. She is the 2019 recipient of the Touching Trauma at Its Heart Award, given by the Attachment Trauma Network for her work advocating on behalf of families coping with traumatic stress from developmental trauma. White has led Parenting with ACEs, Parenting After Trauma, and Writing to Heal workshops and speaks passionately about the need for first-person perspectives and the power of lived expertise. Her survivor-led advocacy has been written about in The Atlantic, Huffington Post, and The Mighty.
The COVID-19 pandemic has been an unprecedented and collective experience for us all. Sadly, the pandemic has affected some more than others. This health crisis highlights both the pre-existing inequities in our healthcare system and the populations that experience such ramifications. Racial and ethnic minority groups (REMGs) will make up the majority of the population in the near future. Over the next two decades, the US population is estimated to make this major demographic shift. This is problematic because present inequities render REMGs disproportionately vulnerable and sick.
It is critical that REMGs are included in clinical trials because, as the broader population, their data will affect the outcome of precision medicine for everyone. Currently, REMGs do not have equitable access to general health care, let alone clinical trials. We need broader genomic data for understanding and curing existing diseases. Collective action is needed so future generations avoid the same health disparities.
Clinical Trials Awareness Week is May 18th-22nd. In light of this, we speak with Dr. Gary Puckrein, president of the National Minority Quality Forum, to learn more about the importance of diversity in clinical trials. In our one-on-one, we learn what’s at stake and what solutions we can act on collectively.
Dr. Puckrein shares three critical considerations. First, we must identify the barriers that prevent diverse clinical trial participation. Second, he describes the bleak outlook if we do not increase diversity in clinical trials. Lastly, we discuss the path to empowerment that creates solutions to these problems.
Historically, clinical trials have been flawed. Different types of barriers prevent diverse participation. For example, in the 1990s, women were not recruited into trials on the assumption that they would react to medications the same way men did:
“Back in the 1990’s we didn’t recruit women into clinical trials and so there was a big struggle to make sure that clinical trials were diverse by gender. Back then the assumption was if you have a bunch of men in the trial, women would react the same way that men do to the medications or the disease pathology would be the same and so, why would you need to have women in trials?”
Likewise, during that time, REMG participation rates were low, around 3-5%. Trust is an essential barrier, with a negative historical context. A poignant example of this for African Americans is the Tuskegee experiment. Dr. Puckrein explains:
“In the African-American community, there are fears that came out of the Tuskegee experiment where therapy was withheld from African-Americans who were suffering from syphilis for no particular reason and it has an awful impact on their lives and so, that’s a deep scar in the African-American community about participating in clinical trials.”
Native American and Hispanic American communities have their own stories of mistrust in clinical trials.
The preexisting inequities in our healthcare system is another barrier, and a systemic one. Statistically, most REMGs don’t have access to basic healthcare, let alone resources to participate in clinical trials. Dr. Puckrein shares staggering data, “before the Affordable Care Act about 48% of African-Americans had no health insurance, about 54% of Hispanics had no health insurance.”
Furthermore, someone may be considered ineligible for a clinical trial if they already have existing health conditions. According to Dr. Puckrein, “REMGs were disproportionately excluded from some clinical trials based on either prior cancers, comorbidities, other things that may not have clinical implications.”
Without diversity in clinical trials, we risk collecting homogenized data which does not include the larger genomic context necessary to understand and improve precision medicine for everyone. It’s important that we make clinical trials all-inclusive, as Dr. Puckrein points out:
“What we’re finding is that we need highly targeted medicine, each individual is different. It has nothing to do with race or anything like that – it’s that everybody’s biology is different.”
The stakes are high because the future of our health depends on inclusivity right now. Clinical trials awareness needs to extend beyond a month of awareness. We don’t want today’s diseases to adversely affect generations to come. What then is a viable solution to this dilemma?
First. Get informed. Understand the larger historical context and intentions of clinical trials.
Second. Share this information by creating learning communities. Dr. Puckrein gives an example:
“If you bring physicians and patient advocacy groups, the policy makers and others around the table, you can solve problems like that and solve them quickly and inform the healthcare system so it’s interactive, it’s constantly learning. And so, we encourage people to build those – make them data driven. Use the data to help guide you on what interventions will work and how you’ll get the best possible outcome for patients.”
Third. Act. If you want to explore options in your treatment, seek out resources that embrace diversity in clinical trials. The “All of Us” Program is a public health initiative designed to remove the barriers that prevent inclusive access. As Dr. Puckrein highlights,
“The “All of Us” program is really designed to address that problem, to take populations that have not historically been in clinical trials — and now we include senior populations in that list as well — and make sure that we’re gaining signs in research about those populations. And so, the “All of Us” program is really designed to fill a big scientific gap in our knowledge.”
Furthermore, it is crucial to engage early with community leaders and grassroots organizations that resonate with underrepresented patients, and to encourage their participation in the critical stages of research.
Seeking knowledge, joining a community of advocates, and taking collective action is key to making a difference for all of us as we journey the path to empowerment.
Diverse Health Hub is a health equity education and awareness channel committed to spotlighting health disparities impacting vulnerable populations. DHH develops resources that forge needle-moving change to improve outcomes and create more equitable spaces for all patients.
The American Society of Clinical Oncology (ASCO) is the preeminent professional organization for oncologists. Their annual meeting usually takes place in Chicago, IL, but this year it goes virtual! Take a look at the infographic below to learn how to attend virtually.
Attend ASCO Online
Gerri Smoluk is an AML survivor, diagnosed at age 56 in 2016. She is currently in remission following successful completion of two rounds of induction therapy and four rounds of consolidation therapy (high-dose chemo) in 2016. Since her recovery Gerri has been exploring “pretirement” working part-time as a freelance medical writer, traveling, volunteering and exploring what she wants to do in the next phase of her life. Gerri spent most of her career as a drug development scientist. Full bio here >>
Feeling uncertain, or even frightened, in our current COVID-19 global reality? You’re not alone. Uncertainty reigns pretty much everywhere these days, despite confident pronouncements of one kind or another from political leaders, pundits, and even scientific experts. The good news is that uncertainty is a key feature of science; the bad news is that humans don’t, in general, deal with uncertainty easily, or even rationally, much of the time.
In my last piece for PEN, I shared my “reliable sources” for trustworthy information in our pandemic times. Now, I’ll work on helping you figure out how to deal with the uncertainty that’s baked in to the effort to get us all through COVID-19’s impact on our lives and our communities.
First, let’s talk about the personal impact of uncertainty. One of the things I’ve built my consulting career on is my knowledge of improv – yes, that same thing that happens in comedy clubs and training classes, at least when we’re not all on house arrest due to global pandemics. I’ve taught improv classes to business groups, showing them how “yes, and” can lead to all sorts of good things, from better team collaboration to better emotional intelligence. Listening is the secret sauce in improv – it’s impossible to participate without listening to your scene partners, jumping in with “yes, and” when the conversation and action is thrown to you.
Working without a script is the definition of improv. It’s also the definition of living through a pandemic, particularly one that’s a new disease caused by, say, a “novel coronavirus” like SARS-CoV-2. Working without a script is also the definition of uncertainty. So, listening closely to yourself, and to the people in your life (be they in your home, or now-virtual folks), and responding with a “yes, and” mindset can help you stay emotionally grounded. That’s my recommendation for managing uncertainty on a personal level, emotionally.
What about the uncertainty festering daily over what’s happening with COVID-19 diagnosis, treatment, vaccine development, and social distancing rules to flatten the infection curve? Science runs on uncertainty. Experiments and studies start with a “what if” question, and then embark on an effort at an answer. One of the best explainers on COVID confusion is from Ed Yong in the Atlantic, “Why the Coronavirus Is So Confusing.”
This sentence jumped out at me:
This is how science actually works. It’s less the parade of decisive blockbuster discoveries that the press often portrays, and more a slow, erratic stumble toward ever less uncertainty.
It’s been alternately entertaining and enraging to watch the global scientific community wrestle with COVID in real time, with virtual fistfights erupting between experts in various disciplines over what’s actually happening in clinical trials, in frontline treatment outcomes, and in testing. Then there are the armchair “experts” who have no scientific background in virology or epidemiology, but plenty of confident opinions on what the solutions are to managing the pandemic.
Ed Yong’s Atlantic piece is worth your time to read – it will help you cut through the seemingly never-ending noise about what science is telling us (and the scientists) about COVD-19, the coronavirus that’s causing it, and where we might be going from here.
Meanwhile, some rules to live (through uncertainty) by:
Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a journalist, she’s a popular speaker and thought leader on healthcare system transformation from the ground up.
We are in a crazy time right now, and no one has experienced anything like it…except for cancer patients. As high-risk patients, we know what it’s like to distance ourselves from others and practice good hygiene. I know I do.
As a thyroid cancer patient, I underwent radioactive iodine treatment, where I became radioactive. I was living with my family at the time, and I had to have my own room and bathroom. No family member could come within a certain distance from me. Not even my dog. I remember them leaving meals outside my door, and texting a parent or sibling when I needed something. It was strange, yes, but I knew it was what I had to do to keep myself and my family safe.
The same thing is happening right now. We’re told to stay at least 6 feet apart from people at all times. Performing normal tasks such as going to the grocery store, a friend’s house, and even work are no longer possible. It creates a sense of grief in all of us, as we feel lost without our normalcy. Instead, we are living a “new normal,” something that cancer patients have already been long accustomed to. It’s as if the rest of the world gets to see how we live, how we feel.
We may have to physically distance ourselves, but staying connected is still possible. And it is in these moments that we can learn how to cultivate strong relationships. We live in a world with an abundance of technology. We have the ability to call, text, email, video chat, Tweet, etc. Had this pandemic happened a long time ago, none of this would’ve been possible. Social distancing would be real.
The Virtual Empowered #PatientChat is a moderated conversation conducted online via Zoom and Facebook Live. This support group will feature an expert moderator, a panel of passionate patient advocates and care partners, and other people seeking a consistent friendly community. Learn more and register!
These can be found for cancers from the general (ex. breast cancer) to the specific (ex. breast cancer with BRCA1 mutation)
Search for these using the hashtag as seen below. A few of my favorites include:
Carly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy.
Last week, we hosted a “Community Check-In” #patientchat with Amanda Greene (@LALupusLady). The #patientchat community came together for an engaging discussion and shared what was their mind.
This post was originally published by Health Content Collective here.
Given the global pandemic, many healthcare providers are shifting gears to give patients the option to receive care virtually, without an in-person visit. The idea of telemedicine may seem a bit daunting so here’s what you need to know to help you have a smooth, effective experience.
The Patient Portal: If you haven’t set this up in the past, now is a great time to get familiar with this technology. You can set up or manage your appointments, communicate with your doctor, view test results and access additional resources. It’s also where you’ll find the technology for virtual visits, if available from your provider. If you do not have login information, contact your provider’s office.
Apps: In some cases, the patient portal will have an app that serves the same purpose. For telemedicine visits, if available, this may be an easier-to-use option as it removes the nuances of compatibility with various browsers.
Instructions: Depending on your doctor’s office or institution, you will receive instructions for joining the virtual appointment. This may be in the form of an email message from the patient portal, a text message (if you’ve opted in), a phone call from the clinic, or all of the above.
Patience: As with any video chat technology, there is inevitably an issue early on either with sound, video or all of the above. Be patient with your provider and yourself as you try to connect. Conversation may not flow as easily as it does with your provider in person, but you will find a comfortable groove after the initial few minutes.
Consent: You will be asked to electronically sign and consent for the virtual appointment. You may receive a message from your doctor via the patient portal or you will be guided through the process as you log in for your visit.
Login in advance to “test your system” – most technology offers this option when you are on the virtual appointment screen.
When scheduling, ask for a phone number to call if you have any issues when connecting.
As we begin to look beyond the pandemic, it seems that virtual medicine may become a mainstay. Certainly, if your visit doesn’t require a physical exam, this option is enormously more convenient for seeing a doctor and being able to communicate how you’re feeling. But if you need a test or bloodwork, this becomes a less reasonable option
What are we missing by visiting a doctor in-person? And, conversely, what are we gaining by going virtual? Like every new technology, there are pros and cons. Only time will tell.
Service as Medicine: Cheer Someone Else Up and Cheer Yourself Up from Patient Empowerment Network on Vimeo.
MPN Network Managers, Summer and Jeff sheltering in place from San Diego, California, challenge listeners to be less consumed with worry by looking at service as medicine. They share how their theater programs, mentoring others and church activities have empowered them to give more of themselves and focus on the positive.
What activities do you enjoy that help you serve others? Share it with Jeff and Summer! question@powerfulpatients.org
Dogs perform many different services for people, including helping us when we’re down. It isn’t uncommon to see a therapy dog wandering down the halls of a nursing home, cheering up the patients inside.
New research has shown that dogs can help alleviate everything from depression to anxiety to aggression and other mental health problems. But how exactly does this work? And do all dogs relieve depression or is it the gift of a select few?
Dogs can sniff out cancer and even detect blood sugar levels, but do they recognize our emotions?
Many studies have found that dogs are susceptible to our emotions. For example, one study found that dogs are sensitive to changes in facial expression. While this study only used angry faces and happy faces, scientists assume that dogs will be able to recognize all if not most changes in the facial expressions of their owners. In other words, they can look at our faces and tell whether we’re happy or sad – at least most of the time.
Another study looked specifically at whether or not dogs can recognize emotions based on vocal tones. This study used a phenomenon called head-orienting to tell which side of a dog’s brain the stimuli were activating. To put things simply, dogs naturally tilt their head when processing audio stimuli based on the part of their brain they’re using to interpret the audio.
The researchers were able to tell what sort of emotion dogs were interpreting each vocalization as using this method. They found that dogs were very good at understanding human voices, even when faces or other cues weren’t visible.
There are many other studies that have looked at whether or not dogs can interpret emotions. However, they all come to the same conclusion – dogs are extremely good at reading a human’s mental state based on things like facial expression, body language, and tone of voice.
Now that we know dogs can recognize our emotions and do often respond to us appropriately, in which ways is this good for treating depression?
One breakthrough study found that most if not all pet owners experienced increased oxytocin levels in their brains. This biochemical is also known as the “love” chemical, and I think anyone with a dog can recognize the unconditional love they often provide. (Unconditional oxytocin, anyone?)
They found that those with pets had less self-reported cases of anxiety and had lower stress-related markers like epinephrine and blood pressure.
Pet owners also had plenty of other benefits in the study, not all of which are directly related to mood. Dog owners had improved pain-management and less sickness, increased trust and higher relationship ratings with other family members in their life, reduced aggression behaviors, and even enhanced learning abilities.
Scientists theorize that higher oxytocin levels are the reason for many of these benefits.
As you might know, raising oxytocin levels is very beneficial for those with depression. Oxytocin plays a crucial role in regulating anxiety and stress. When it is low, these emotions can run rampant.
The simple presence of a dog can help fight depression simply because of the increased levels of oxytocin pet owners often experience.
Similarly, dog owners have lower stress markers than those who don’t own dogs. A stress marker is a biological function that kicks in when we feel stressed, like our blood pressure or levels of certain hormones. Measuring these levels is an excellent way to get an objective idea of someone’s stress levels.
Many studies have shown that pet owners often have lower stress markers across the board, which means they are likely less stressed. For example, one study showed that owning a dog lowered blood pressure levels.
Depression often feels lonely. It makes its victims withdrawal from the world, though face-to-face contact often relieves many symptoms of depression.
Dogs offer unconditional companionship to their owners and help remind them that they aren’t alone. Dogs don’t require the depressed person to leave the house or pick up the phone, which many depressed people cannot do on their worst days.
Furthermore, because dogs can recognize when their owners are depressed, many will automatically provide comfort in a time of need.
Dogs help with anxiety and other mental illness, similarly to how they help with depression.
They increase oxytocin production, which decreases stress and fear, and provides unconditional companionship to their owners. These things help with mental illnesses of all kinds, including anxiety and depression.
In our modern world, children might be particularly vulnerable to anxiety, even in the elementary school years. Luckily, these benefits are apparent across all ages, including children. One study did find that children who owned dogs were less likely to have anxiety or a similar disorder than those without dogs.
Dogs might be particularly useful at treating anxiety in children with Autism Spectrum Disorder.
Having a dog also requires you to partake in activities that contribute to a healthy lifestyle and help diminish the effects of depression.
For example, every dog is going to need exercise. Even if you have a breed that doesn’t require long walks, they are going to need to be taken outside multiple times a day to use the potty.
Simply getting outside and walking around in a green area has been shown to improve physical and mental health outcomes. Going out can also increase vitamin D intake, which can also improve mental health. Vitamin D deficiency can mirror depression in many ways and mental health professions think it plays a critical role in many depression symptoms.
There is also some degree of responsibility that comes with owning a dog. You have to get up to feed them, take them outside, and get them some exercise. Even if you did the bare minimum on any given day and only took care of your dog, you would get more done that if you owned no pets. Exercise and dogs are often correlated with being more productive for these reasons.
Plus, responsibility and productivity are linked with higher self-esteem. Those who get stuff done tend to think higher of themselves. This can help undercut many of the negative thoughts that are common with depression and other mental health problems.
There have been very few studies on which types of dogs are best for depression. Overall, there seems to be very little difference between highly trained service dogs and your average companion dog when it comes to treating depression symptoms. This is likely because there are very few specific actions a dog can perform to help with depression. It is mostly their presence and day-to-day maintenance that is crucial for treating depression symptoms.
However, trained service dogs can be helpful to those with PTSD, anxiety, and other mental illnesses. In these cases, dogs can perform specific commands that can help substantially. Service dogs for anxiety can often detect anxiety attacks before they start and prompt their owners to get to a safe place.
In terms of breed, no one dog breed is better for depression than others. In general, it is better to pick low-maintenance dogs, as someone with depression might not have the energy to care for an energetic Jack Russel or the highly-intelligent border collie.
As usual, you should take into account your living situation and lifestyle when choosing a dog as well. A giant dog might not be suitable if you live in a smaller home. Some people might find it very calming to brush a dog daily, but you might not.
Labrador Retrievers are a standard go-to for all service dogs and emotional support dogs. These canines are reliable and dependable without requiring vast amounts of maintenance. They do require quite a bit of exercise each day, but not as much as most big dogs.
Other dog breeds that are good for those with depression include Greyhounds, Havanese, Whippets, and Spaniels.
Dogs can help with depression through a variety of health benefits. Their closeness increases oxytocin production and levels of serotonin, which in turn decreases levels of stress and lower blood pressure. It also increases positive emotions and can make us more trusting of others around us. Our furry best friends can also provide the emotional support we need. Just being around a dog can even lower our heart rate.
Dogs also force us to perform actions like going outside and exercise, which can help improve depression symptoms. The simple fact that you’re owning and caring for a dog can improve your self-esteem and well-being.
There isn’t much of a difference between particular dog breeds when it comes to their health benefits. In general, you should select a dog to help with your depression that same way you would choose any dog.
