Last week, we hosted an Open Mic Empowered #patientchat. The #patientchat community came together for an engaging discussion and shared what was their mind.
If you have not been up to date with healthcare news, or do not work in any healthcare related field, you may be unaware of the gradual increase how reliant the sector is on technology. Every facet of society has been on an upward climb with how digitized it is, and healthcare is no exception. From breakthroughs as interesting as robotic surgery to standardizing electronic patient notes, both primary and secondary care have grown accustomed to the benefits of how artificial intelligence can benefit them.
In healthcare, introducing new treatment whether based in technology or pharmaceuticals is highly expensive, though great efforts are being taken to increase efficiency, reduce human errors and improve healthcare overall. In the long running of things, this would save the healthcare economy billions in coming decades.
There has been a public declaration made by IBM Watson Health to incorporate artificial intelligence to the ongoing battle against cancer. The focus currently lies with later stage cancer patients who are at their most critical points. This is because it is likely current treatments have failed for them, or aren’t strong enough. New treatments could offer them the best chances when facing their life or death situations.
Specific genetic factors involved in cancer can be identified and targeted with idealized therapies. This offers hope to many Veterans in the US, and cancer patients worldwide.
It has been about three whole decades since a new effective antibiotic has been discovered. This has led to a seemingly losing battle with the emergence of more superbugs (antibiotic resistant pathogens) significantly often. The journey to discovering new drugs is very expensive, meaning many drug companies have slowed down the process of discovery. However, Pfizer’s use of IBM Watson (technology that utilizes machine-based learning) is pioneering the path to finding new drugs that are active for cancer and immune therapies.
Other drug companies such as Sanofi are using artificial intelligence to find new therapies for metabolic disease; Genentech are also leading the way in cancer research with artificial intelligence from Cambridge, Massachusetts.
The correct term for this is robot-assisted surgery, because though it looks like a robot is handling the surgery from the operating theatre, there is actually a surgeon (or multiple surgeons) that are controlling the robotic tools remotely. This has been rolled out successfully in multiple countries so far. These include the United Kingdom and Dubai. The major benefits of robot-assisted surgery is increased precision and accuracy. There is less room for human error, and more room for improved patient care.
One of three or sometimes four main branches of prevention, secondary prevention relates mostly to medical imaging. There has been a huge surge of technological advances in this area in the past century. The simple ultrasound has become 3D imaging and the simple radiograph has become detailed computerised tomography. New approaches can now be taken, that reveals more information about patients. This leads to clearer imaging, faster diagnosing and better results.
Genetic screening has been more incorporated into healthcare since the sequencing of the human genome in recent decades. With genetic information and associations readily available, more accessible means of accessing patient DNA have been developed. There are now easy methods of reaching a patient’s genetic code and assessing their risk for certain health issues that carry genetic risks.
“Polygenic scoring weighs the linear combination of multiple small genetic variations and are used in predisposition assessment,” says Mary Crawford, tech blogger at Australia2Write and Write Myx.
Nursing is investing in the development of virtual assistants, which can take over the role of healthcare assistants and push the healthcare staff population to higher fields of work. Healthcare providers will then be able to maintain continuous contact with patients.
A major leap in healthcare is digitizing patient records, and rolling out a singular way of standardizing them across the country. Though this is extremely useful for transferring patients from healthcare provider to healthcare provider, it creates room for a cyber-attacks that will steal sensitive data.
“As artificial intelligence increases with patient data storage, it also increases with cybersecurity. Extra security is essential to patient protection,” says Erick Schmid, data analyst for Brit Student and Next Course Work.
Discussing how healthcare may become revolutionized by artificial intelligence may conjure up images of the 1985 movie Daryl. However, the movements are very much real and non-fictional. Productivity is on the rise and medicine has become more business-minded.
Due to its benefits, artificial intelligence is certainly gaining popularity in the healthcare industry and there are developments every year. There are predictions that the involvement of artificial intelligence will grow by 1000% by 2015, pushing it to become a 13 billion dollar industry.
Michael Dehoyos is a medical Blogger at Phd Kingdom and Academic brits. He assists companies in their marketing strategy concepts, and contributes to numerous sites and publications. Also, he is a writer at Case Study Help, academic service.
Michael Dehoyos is a medical Blogger at Phd Kingdom and Academic brits. He assists companies in their marketing strategy concepts, and contributes to numerous sites and publications. Also, he is a writer at Case Study Help , academic service.
Taking care of a loved one can be one of the most rewarding experiences, especially if you have had a great relationship with that loved one. While the overall involvement in a senior loved one’s life as a caregiver might be satisfying and make you feel happy or proud of working together, there are times when it can lead to mental and emotional burnout. After all, you are constantly required to nurture and care for another human being which could cause you to forget to care for yourself, leading to “caregiver fatigue” or also known by the popular phrase, “caregiver burnout.”
According to the National Alliance for Caregivers, on average, family caregivers spend around 24 hours a week providing care for their loved ones. I personally was spending anywhere from 20-30 hours weekly while taking care of my grandmother. It really depended on the week and the needs that came up. But sometimes, it felt like much more time was being spent taking care of my grandmother rather than myself.
What I learned during the process was that the best way to avoid caregiver burnout was to identify when I felt I was going through it. Then, to prevent it. Which led me to highlight some signs linked to caregiver burnout.
The following signs point to caregiver burnout:
The above list of signs isn’t exhaustive but contains the most common signs that caregivers start to experience prior to or during burnout. While the above list is specific for emotional burnout, physical burnout is also important to avoid. Most caregivers face it from having to carry their senior loved ones from room to room or up the stairs or not getting proper sleep.
It is vital that our loved ones utilize technology that is available to them such as wheelchairs, canes, and even stairlifts for elderly persons to take that burden off of yourself. You can help with this by making a list of mobility or technology devices that can benefit both of your lives and take the stress off of your body. While your senior loved one may not be very keen on the idea of using mobility devices (not all are), you’ll need to reason with them why the device is a necessity for them and yourself. Hopefully, they’ll end up understanding the needs of both of you.
In any case of burnout, as soon as you start to experience the signs, it is important you take a step back and analyze why you may be burning yourself out. You need to ask yourself the following:
These questions will help narrow your problem leading to burnout so you can avoid and rectify it. Most caregivers do the following to avoid or combat burnout:
You alone may not be able to provide full-time support for a loved one. At times many caregivers are juggling family and a job along with providing care. This, of course, is a lot to juggle and usually leads to stress and mental/physical breakdowns especially when taking care of a loved one going through a long-term recovery. Which is why you need to take breaks and at times, seek the help of professional caregivers or other family members to assist you. It doesn’t have to be every day but taking a break two to three times a week can make a huge difference and help prevent burnout.
By taking time out for yourself, you can also improve your relationship with your loved one. Personally, a break allowed me to focus on myself, which made me less absorbed on just my grandmother. I usually exercised or spent time with friends which kept me grounded.
Before I started to take breaks, I felt I was more irritated and disgruntled from time to time with my grandmother, mostly because I felt I was not getting time to do anything but take care of her. But by taking some time off from my caregiving responsibilities, I no longer felt this way which definitely made our relationship better. Even she started noticing that I was acting happier and my overall outlook about the situation was then positive.
Humans find comfort in discussing their problems. Just the process of venting helps us get a lot off our chest. Which is why caregivers should look towards family members and other caregivers to talk to about any problems or additional stress they may be taking on. It doesn’t necessarily have to be to seek a solution but just to vent their feelings out so you stay refreshed and grounded.
I sought refuge in a friend who was also taking care of a loved one who recently went through a stroke. We would talk 2-3 times a week to listen and comfort one another. By sharing my thoughts with others, I let go of a lot of steam that I would normally store.
Most of it was just things I had to let go of, but of course, keeping it in did hurt the relationship I had with my grandmother. The more I got off my chest while talking to family and other caregivers, the more comfortable I was. Especially while talking to other caregivers because it made me realize that others also shared similar feelings and I wasn’t alone. This helped me to refocus my mindset with a positive outlook and created a stronger, deeper connection with my grandmother.
If you find yourself experiencing the signs listed above or you already believe that you have caregiver burnout, know that you aren’t alone. The best thing you can do is try to find what works for you to better your mindset. Maybe you don’t feel like you’re the issue and that your loved one is causing the exhaustion. Whatever the case, take a step back, analyze the situation, and find a route to channel your emotions. Don’t assume this is an overnight thing, consistency is key to constructing a relationship and removing negative energy.
Natasha is a firm believer in health and wellness for all ages. Having been a family caregiver for her grandmother, she knows what it’s like to go through family trials and tribulations. She is currently a blogger who wants to aid others in understanding the tips of healthy and safe aging that she has come across with her own personal experiences as well as through deep research on the topic.
When you go through something as stressful, traumatizing, and life-altering as cancer, you may come out on the other end of the tunnel feeling like you were just put through the spin cycle. There’s no “normal” way to respond to a cancer diagnosis, treatment, or remission prognosis, and you should never force yourself into taking on one specific emotion or perspective. You may feel angry, sad, scared, hopeful, or joyous, and all are perfectly acceptable responses to have.
Regardless of how the experience left you feeling, it’s important to work at moving on and processing it in a healthy way. Here are a few ways to help you do it.
You’ve spent the last several months or years caring for your body to the point of exhaustion. Now it’s your brain’s turn. Depression, anxiety, post-traumatic stress, and cancer fears are quite common among survivors. In fact, between 18 and 20 percent of adult cancer survivors report symptoms of anxiety[1], while almost 80 percent of survivors experience some level of fear of recurrence. It’s vital that cancer survivors and patients alike are constantly looking inward and taking daily measurements of mood and general well-being. If you experience any persistent, negative feelings, be sure to seek out advice from a licensed mental health professional.
Because your daily life was thrown completely off track during treatment, it can be hard to settle back into a healthy routine when it’s all over. Implementing certain self-care practices into your day-to-day life can help you stay mindful and prevent you from slipping into prolonged states of anxiety or depression. It will help you immensely to pick up healthy self-care practices, such as yoga, meditation, or long evening baths. Integrating weekly or bi-weekly social time will also help quite a bit, especially if you’re spending time with people who share similar interests or experiences.
Though we’re ever-grateful that they exist (and save thousands of lives each year), chemotherapy, surgery, and radiation take a massive toll on our bodies. They leave us looking and feeling burnt out and exhausted, often grinding the last little bit of self-confidence we have into a sad, lifeless pulp. Even if you’ve never been a particularly vain person, your life post-cancer is time to help you regain your self-worth at every turn, and it’s perfectly okay to spend some time making yourself feel beautiful both inside and out! Here are some great ways to do it:
If you lost your hair during chemotherapy, there are a few cutting-edge hair loss treatments to consider. Though they’ve only been cleared to treat hair loss due to androgenetic alopecia by the FDA, many people find that low-level laser therapy devices help hair to grow back [2] quicker and healthier after treatment. Luckily, while it takes a little bit of time, most cancer patients are able to fully grow back their hair.
Cancer patients know that the constant barrage of chemicals and harsh treatments can seriously mess with our weight. Weight loss is one of the most common symptoms of both cancer and treatment, with between 40 and 80 percent of patients reporting weight loss [3] and cachexia (wasting) from diagnosis to advanced treatment. Working with your doctor or a dietician will help you return to a healthy weight in a safe way. He or she will design a diet and, if needed, prescribe medication to help you manage your weight.
Hair isn’t the only physical feature that takes a beating during the treatment process. Chemotherapy and radiation can leave skin red, dry, itchy, or discolored, and it tends to leave nails cracked, infected, or yellow. A full-blown spa day is in order after you’ve recovered from your final treatment. Make sure to also see a dermatologist, especially if you’ve seen any serious changes in your skin since you were diagnosed.
Building up a strong social network is vital to staying happy and positive post-cancer, and nobody will help you get there faster than fellow survivors. Like anything on this list, make sure you ease into it and wait until you’re fully ready. Having to recount your experience before you’ve fully processed it can worsen symptoms of post-traumatic stress, depression, and anxiety. But, after a period of time, it will help you feel stronger and more secure when you have a group of friends or family members to share your experience with. You can use the American Cancer Society’s resources database [4] to find specific support groups in your area.
Medical experts consistently say that exercise is among the most important components of a healthy life during and after cancer. One of the biggest reasons for this is that, though it sounds counterintuitive, getting physical can help reduce the ever-present cancer fatigue while also helping you get better sleep, reducing symptoms of depression and anxiety, and helping you build back muscle strength that may have deteriorated during treatment. Just be sure to follow all medical advice as you ease back into exercise, especially if you’ve recently had surgery.
If you’re experiencing any feelings of sadness, anger, or hopelessness, it can really help you to get involved in cancer-specific organizations that donate to research efforts. Finding a cure or at least more viable treatment options for this devastating disease is certainly on the horizon, but getting there takes a lot of money, resources, and effort. Getting involved can help you connect with other survivors and hopeful people, which will lead you into a deeper state of happiness and optimism.
Again, there’s no “correct” way to experience cancer, no matter if you’ve just been diagnosed or have just finished your final round of treatment. The most important thing you can do is to constantly take stock of your feelings, being careful not to suppress them, and do everything you can to stay healthy both mentally and physically every step of the way.
References:
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5915316/
[2] https://www.capillus.com/blog/a-skeptic%E2%80%99s-guide-to-understanding-how-a-laser-hair-cap-helps-regrow-hair/
[3] https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/weight-loss
[4] https://www.cancer.org/treatment/support-programs-and-services/resource-search.html
Shane McCarthy is the Content Director for Capillus, the world’s first, clinically-proven, FDA-cleared laser cap to treat hair loss. Shane works to share informative and engaging content based off of the struggles and prevention of adult hair loss and thinning. In his free time, he enjoys spending time out on the water wakeboarding and fishing.
As patient advocates we are highly motivated to make things better for others. Our commitment and passion for the work we do can lead us to take on more activities with ever-increasing demands on our time and energy. All of this we do willingly, but this work doesn’t happen without a degree of personal cost. “If we are living with the condition, it is personal beyond measure,” writes diabetes advocate Renza Scibilia. “If we are caring for someone and advocating for them, there is a different sense of pressure and investment. And if we decide that this is ‘a calling’ and do it professionally, there is a difference again as we try to work within different parameters – the need to keep within the realms of what our work allows, and the less structured realities of actually living with a health condition.”
Commenting on the nature of patient advocacy, therapist Karin Sieger [1] points out, “this area can be heightened with emotions because lives can depend on it and often advocates themselves are directly or indirectly affected by patient care aspects or illness they are advocating for. It stands to reason that those involved in advocacy will be at the receiving end of emotional, mental and physically draining activities.” Given this fact, it’s not uncommon to experience symptoms of burnout the longer we work in the field of advocacy.
“This is a real thing,” says patient leader and two-time cancer survivor, Shari Berman [2]. “Working without pay but as a patient leader is recipe for burnout especially when you feel like the needle isn’t moving.” As metastatic breast cancer patient and advocate, Julia Maues [3] says, “Oh the burnout is so real and so unique. For once, many of us have the same illness as the people we are advocating for. It’s like advocating for better lives for prisoners while being in jail ourselves.”
Burnout is a state of chronic stress which occurs when we’ve taken on too much and in the words of Sieger, “overstepped our coping threshold.” Scibilia describes how she has “found myself at that breaking point on more than one occasion when the system is failing me, and equally, when I see it failing others and I can’t help.”
One of the lesser acknowledged contributing factors to burnout, particularly in the field of cancer advocacy, is the emotional toll of losing friends to the disease. As Susan Zager, founder of the non-profit organization, Advocates for Breast Cancer (A4BC) [4] describes, “the biggest factor that’s caused me burnout is the intense loss and grief of losing so many friends and family to this terrible disease.” Research advocate, AnneMarie Ciccarella [5] agrees. “I had to force myself to take a step back from actively supporting individual people in favor of more research advocacy because the losses became unbearable,” she explains. “There are times I’ll look at a particular blog post and start crying when I read the comments. I see comments from so many who are now gone and it’s heartbreaking.”
Pamela Katz Ressler, founder of Stress Resources [6], draws a distinction between burnout and compassion fatigue which can co-exist with burn-out. “Compassion fatigue is generally rapid onset and often is the result of exposure to extreme suffering or witnessing traumatic events and situations,” she explains. “It can be one event or a cumulative exposure. Burnout can be described as emotional (and physical) exhaustion leading to withdrawal and disconnection from activities that once were meaningful. As advocates, we often expend energy, caring, and empathy as if it comes from a bottomless well.”
Burnout doesn’t happen suddenly. It creeps up on us over time, but our bodies and minds do give us warning signs. Symptoms can include physical and emotional exhaustion; impaired concentration; increased irritability or feelings of apathy, detachment or cynicism related to the work you are doing. In the words of Scibilia, “I get tired. I get overwhelmed. I get discouraged. I get disengaged. I get disheartened.
Looking at some of the common factors related to burnout, Sieger points to:
If you recognize your own tendency towards any of these factors, you may be at risk of burnout. Katz Ressler advises that “the first step in preventing burnout and compassion fatigue is awareness and recognition that the well of empathy, energy and caring needs to continually be refilled.” The following self-care strategies and tips can help you, in the words of Katz Ressler, “refill the well of empathy to maintain your ability to advocate effectively.”
“Different people have different ways that work well for them, says Sieger. “Self-care, keeping health boundaries, a healthy diet, limited stress, moderate exercise, sufficient sleep and quiet down-time are the essentials.”
Let’s take a deeper dive into these essential strategies and add a few more to our self-care toolkit.
1. Set realistic expectations. Patient advocate, Liza Bernstein [7], believes a key element in managing burnout is to set realistic expectations. “One key to mitigating patient advocacy burnout is to recognize our role and agency in trying to manage it,” she says. “It is not easy, once you’re diagnosed with and treated for cancer to reconcile your new physical and emotional reality with the non-cancer person you used to be. So we have unrealistic expectations.” Bernstein describes her “burnout prevention strategy” at the 2018 San Antonio Breast Cancer Symposium. “It was a few months after a surgery and I wasn’t yet 100%,” she explains. “So I gave myself ‘The Talk’ and granted myself permission to do ‘as little as possible’ there; e., I paced myself, took breaks, and didn’t burden myself with ableist expectations. I did more tangible things tuning out the presentation & DM’ing people in my network to connect a distressed newly diagnosed person with a second opinion appointment. Seems like small thing but had big impact!”
2. Take breaks between big projects. Try to avoid jumping from one time-consuming project to the next in order to give your mind and body a chance to recover. “When projects turn into being a tedious chore, that’s a big sign of burn out,” says patient advocate Mary Pettigrew [8], who advises, “make it a habit to purge the unfulfilling, stressful activities, keep those of value and explore new territory/opportunities.”
3. Learn to prioritize. Ovarian cancer advocate, Dee Sparacio, wrote on her blog [9] about taking a step back from her heavy work-load of advocacy activities to focus on her priorities. She outlined a list of questions to help her decide which activities to prioritize:
Remember, to quote Stage 4 melanoma patient, Kay Curtin [10], “it’s very easy to get caught up trying to fix everyone’ else’s priorities.” These questions can act as a helpful guide when it comes to reassessing your own priorities and what matters to you.
4. Say no. Self-care may involve you saying no more often, which, if you are like me, you might find challenging. There are always new opportunities or requests for your time, but an important element of self-care is the ability to pace yourself. Before you say yes to the next request, look at the time and energy you have in a realistic way. Follow Sparacio’s advice “I review my advocacy work and its impact once a year. I keep what brings me joy -not necessarily that which brings me exposure. The hard thing is learning to say no. If I say no I will provide the name of a new advocate voice. We need to cultivate new voices.”
5. Schedule time for yourself each day. “Schedule time to step away from ‘doing’ and shift to ‘being’. Take five minutes to turn off your phone, notice your breath and release muscle tension in your body,” recommends Katz Ressler. “I’ll hit the beach collecting shells to clear my head, but a simple walk around the block is helpful too,” says Ciccarella, “and when I have nothing left, I give myself permission to hit the sofa and turn on mindless, silly television.”
6. Feed your fighting spirit. Registered dietitian and founder of “Dam. Mad. About Breast Cancer”[11], Cathy Leman reminds us of the importance of good nutrition in maintaining a healthy balance. “Balanced blood sugar for sustained energy and optimizing your immune system so you stay well are just two benefits of nourishing your body with quality meals and snacks,” she says. “Dried, fresh and frozen fruit, nuts, pre-washed and bagged veggies, whole grains and good olive oils and flavored vinegars can help you pull meals and snacks together quickly and easily.”
7. Control your devices. iPads, computers, and smartphones are essential tools in the patient advocate’s toolkit, but they can consume large amounts of your time and energy. Get in the habit of turning them off as much as possible, particularly before you go to bed at night.
8. Slumber your way to good health. “With all you have to get done, getting adequate sleep may fall to the bottom of your list,” says Leman “But when you don’t get the sleep your body needs (and deserves!), your overall performance suffers.” A good morning, she advises always begins the night before. “Create an evening ‘sleep hygiene’ routine that signals to your brain and body you’re ready to call it a day. When you’re well rested, you’ll have more patience, clarity of thought and focus to do your important work. And as a bonus? Getting enough sleep helps you make healthier food choices, which supports good health all the way around.”
9. Exercise your body’s need to move. “You need mental clarity, focus and stamina, and regular exercise is a simple way to tap those reserves,” advises Leman. “Even a 10 minute walk can clear brain fog, deliver nutrients and oxygen to every cell in your body, and build physical endurance for the long haul. Combine strength training, cardiovascular, core, flexibility and balance exercises as often as possible for a well-rounded fitness routine that will keep you moving forward.”
10. Take time for reflection. Taking time, whether it’s sitting quietly on your own, journaling, or speaking with a friend or therapist to reflect on what’s going on for you is important. “It’s important for all of us in this space to pause, assess, and take whatever time we need to reboot,” advises Ciccarella, for whom writing is “a powerful outlet to deal with all of my feelings. Identifying my feelings and their underlying cause allows me to accept the feeling and FEEL it – whether it’s fear, anger, grief -really, any emotion that drags me down.”
11. Don’t go it alone. Whether it’s peer support, or a professional, find a group or an individual who can support you on this journey. “I would even go as far as saying that having another independent professional to support us is essential,” suggests Sieger, “like supervision for therapists and counsellors, where we can talk things over, an outlet for our pressure and feelings.”
12. Intentionally step away from your “tribe” for short periods of time to refill your reserves, advises Katz Ressler. “Detribe” is a term she coined a number of years ago that may seem counterintuitive. As she explains it: “How can we step away from our ‘tribe’ when there is so much to do? Research shows that by intentionally engaging in self-care activities (think meditation, a walk in nature, a cup of tea with a friend) burnout can be reduced or eliminated.”
13. Choose what works for you. “You have to find what works for you,” says Bernstein. “It might not be a massage/spa, it might be doing what you love, giving back, being in nature, taking a nap, patting your dog… it really means being compassionate to you, as if you were your best friend.” Katz Ressler echoes this and advocates practising a spirit of loving-kindness. “Allow yourself to be as kind and empathic to yourself as you are to others. What ‘gift’ would you give someone else to show they are appreciated? Give the same gift to yourself,” she says.
14. Knowing when it’s time to quit. Sometimes the best self-care is to quit. Sue Robins [12] took the decision to do just that. “I still do advocacy but on my own terms, through writing and storytelling and with individuals. I handled my burnout by quitting the ‘patient engagement’ world.”
“Burnout in patient advocacy is real,” says Terri Coutee, founder of DiepCFoundation.org [13]. “It takes a tremendous amount of dedication and discipline with the potential of draining your personal emotional and physical energy.” But the good news is that burnout is reversible. By putting the focus back on self-care, you can learn to manage your energy, time, and personal resources better. Although, this too takes self-discipline. “I think it takes discipline (ie, effort) for many of us to remind ourselves we need to practice self-care regularly,” notes Bernstein. As Coutee explains, “choosing the gym, saying no, and letting others take care of themselves are among the many actions requiring discipline. Choose the one that works for you so you can continue the work of patient advocacy with passion without burning out.”
Whichever path to self-care you choose, once burnout is recognized and attended to, it can become a chance to rediscover your commitment to the important work you do as advocates for better care for yourself, your loved ones and your community. Let these tips and techniques be a reminder that YOU are most deserving of the gift of self-care.
[1] Karin Sieger
[2] Shari Berman
[3] Julia Maues
[4] Advocates for Breast Cancer
[6] Stress Resources
[7] Liza Bernstein
[8] Mary Pettigrew
[9] Dee’s blog
[10] Kay Curtin
[11] Dam. Mad. About Breast Cancer
[12] Sue Robins
[13] DiepCFoundation.org
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
I recently listened to one of my favorite podcasts, “What Should I Read Next.” The premise of the podcast is the host, Anne Bogel, chats with a guest about their reading life, including three books they love, one book they don’t, and what they’re currently reading. In a recent episode, she spoke with a physician who was about to retire. She said that she had been trying to read more books with different genres, as her main focus for the majority of her life and education had been science-based texts. She grew up in the library reading a variety of books and still tries to educate herself by going to lectures and author talks. However, she was looking for more books that focused on the humanities. HUMAN. Which got me thinking about my background in health communication and my passion for health literacy. I know that one of the many reasons that doctors go into the medical field is because they want to help people. They have a strong sense of empathy and the passion to care for others. However, throughout all of the scientific jargon that they retain and medical knowledge that they gain, they may lose the ability to connect one on one with the patient, to really understand what’s going on behind the aches and pains. Plus, office visits with patients are getting shorter. Doctors don’t have the time to really understand what is going on with the patient before they try and get them in and out to move on to the next. They feel rushed, and as a result, the patient can walk out not knowing what happened. According to the Agency for Health Care Research and Quality, a division of the U.S. Department of Health and Human Services, poor communication can have a detrimental effect on people’s health. For example, patients may not comply with doctors’ orders because of a lack of understanding. It can also hurt medical practices as patients have the option to leave doctors who they feel do not communicate well and therefore, a lack of trust develops.1
So how can we fix this? Can we emerge communication education into the medical curriculum, including required continuing medical education? Can we focus on the human connection that led these doctors to practice medicine in the first place?
What do you as a patient want from your doctor? What do you feel is lacking in the patient-physician relationship?
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 an Empowered #patientchat on how to read and understand scientific research. The #patientchat community came together for an engaging discussion and shared their best advice and tips.
After cardiac diseases, cancer is the second most leading cause of death worldwide. According to WHO, 20% of deaths are down to cancer while in 2018, there were 18 million new cases, along with 9.6 million deaths were reported. Although the number of surveillance within five years after the diagnosis of cancer is 43 million. In the US alone, 1,688,780 new cases and 600,920 cancer-related deaths were reported in 2017 by National Cancer Institute (NCI).
Researchers have conducted meticulous studies to discover new ways to cure this deadly disease. Currently, the most effective treatment options are radiotherapy, chemotherapy, surgery, and hormonal therapy. But the concern is; how close are experts are in finding more effective treatment options for cancer? Many innovative therapies are beginning to pick up steam to defeat the battle against cancer and ideally having fewer side effects than available options.
Cancer is not just a game of winners and losers [1], these innovations are aimed to address the issues of aggressive treatment, recurrence, irreversible side effects that healthcare providers and patients both face. Below are some updates on the most advanced cancer research breakthroughs that have given us hope for better therapies and prevention methods with less harm.
Immunotherapy aims to reinforce existing arsenals in our body to fight against cancer cells. Some types of cancers have the characteristic of duping our immune system. However, with the help of in vivo and in vitro experiments, researchers are exploring new ways to deactivate the protective system of cancer cells.
According to Nature Immunology, macrophages that usually eat up harmful foreign bodies and cellular debris fail to obliterate highly aggressive cancer cells. The reason behind this is the macrophages read out two different signals from cancer cells that are meant to rep-el them for cleaning mechanism. Hence, by blocking the dual signaling pathway, researchers can make white blood cells unable to perform their action.
Innovative virus vaccines are proven to be a surprising weapon to fight against cancer. In the UK, a team of scientists has succeeded to use reovirus against brain cancer cells [2] while not harming healthy cells. It can pass the blood-brain barrier hence opens up the possibilities towards betterment.
Another milestone is the discovery of dendritic vaccines, in which they are extracted from a person’s body and armed with tumor-specific antigens that make them hunt and smash the cancer cells. Then the dose is injected back to the patient’s body to boost the therapy. Some concerns raise as it may have some pitfalls of damaging healthy tissues.
To address this, researchers from North Carolina have developed a bio-responsive scaffold system to hold on both chemotherapy and immunotherapy with better control on targeting tumor.
Stakeholders believe that nanoparticles can be a game-changer in the treatment of cancer. They are précised and are less invasive to target specific cells without harming the surrounding environment. They can be used to give hyperthermic treatment to make tumors shrink.
Researchers are working on self-regulating nanoparticles to target undifferentiated carcinoma cells without damaging healthy tissues. They can be used to target stem cells to treat the resilience of cancers. They can even be loaded with drugs to prevent recurrence of degenerative diseases [3] and can be beneficial in the treatment of invasive carcinomas such as endometrial and breast cancers.
Starving cancer cells to death is a novel method to kill them. There are many studies onboard that prove multiple ways of cutting off cancer cells nutritional supplies. One effective way is to stop the glutamine supply. It will maximize the oxidative stress and induce cell death. Moreover, blocking the supply of vitamin B2 can halter cancer stem cells. Therefore the strategy can help to avoid the toxic effects of chemotherapeutic agents.
This refers to the alteration of gene expression to dominate the representative action to affect cells at a biological level. Recent advancements have shown that cancer cells can harbor epigenetic modifications [4] to promote progression and eradication of carcinoma.
Scientists have to channelize the potential without triggering Huntington’s disease, and this is the biggest challenge and concern for them that makes them more hopeful. The knowledge can be utilized to treat stubborn tumors and progress enzyme inhibitors for better success rates.
Shawn Brad, Research content writer at King Essay [5] believes that researches have given us innovate safe ways to cure cancers and studies are running at a good pace; however, curing every type of cancer is definitely a matter of time. Promising studies immensely give us hope on some technological terms for upcoming years.
It is difficult to say that a single approach is going to work for a variety of needs, while much advanced emerging ways can be useful in treatments. Hence, there are optimistic efforts, that make us claim that cancer can be eradicated quickly, and further depth in knowledge can give us more targeted and précised tools to turn the tables.
[1] Cancer is not just a game of winners and losers
[2] reovirus against brain cancer cells
[3] prevent recurrence of degenerative diseases
[4] harbor epigenetic modifications
[5] King Essay
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The thought of losing someone you love is almost unbearable, but for millions of people each year they must grieve for someone close to them. Grief is an emotion we all face at one time or another in our lives and is completely natural. However, being natural does not make it easy. While we may never truly get over the loss of a loved one [1], there are steps to be taken that can help you process grief and make life a little easier.
Grief is an emotional stress that we store within the body and overtime those emotions can help bring us down. Yoga [2] is one way to help loosen that tightness without having it all unravel at once. Yoga allows your mind to soothe yourself by providing mental self-care and at the same time physical activity which is also important for releasing pent up stress or anxiety.
Essential oils are chemicals that can either be rubbed on the skin or inhaled. Inhaling essential oils helps to stimulate areas of the limbic system that regulate emotion, behavior, long-term memory, breathing, heart rate, and blood pressure.
Each oil, such as rose or sandalwood, provides specific or healing responses depending on the emotion you are trying to inhibit or soothe. For example, rose [3] is commonly used to ease anxiety, depression, headaches, and menstrual cramps.
Sleep can be difficult when you are going through a grief cycle [4]. This is because your mind is filled with thoughts about the loss of your loved one. In addition, when you do fall asleep you are likely to be plagued with sleep disruptions such as nightmares. While getting a quality night of sleep can be difficult there are a few things that can be done to help ease yourself into bed. For starters it is important to create an environment to induce sleep. Use dark or calming colors or black out curtains. Essential oils, a white noise machine, and mood music can all help. If all else fails, cuddling up to a loved one like your spouse or pet [5] are shown to fulfill the need for security and comfort.
A lack of motivation is one of the most difficult things to overcome when you suffer from grief. Grief can easily swallow you up and keep you hidden from the outside world. This is one of the reasons why exercise is so important for grief sufferers. Endorphins [6] released during exercise reduce our perception of pain – both mental and physical. This helps to create an improved mood and the physical exertion of your body contributes to better sleep, and an overall feeling of accomplishment.
Massage therapy [7] utilizes a variety of tools and mechanisms such as oils, music, and level of touch that can help a person experiencing grief. Massage therapy has a long history of improving physical conditions and emotional conditions such as grief. Massage therapy helps to soften the body’s muscle tissues that become when experiencing grief while improving blood circulation an overall state of calm.
[1] Grief Isn’t Something to Get Over
[2] Grief Yoga
[3] Health Benefits of Rose Essential Oil
[4] Sleep and Grief: Tips and Tricks to Get the Rest You Need
[5] Here’s Why Sleeping With Your Dog Is Actually Good For You
Clinical Trial Mythbusters: How Does Medicare or Medicaid Impact My Ability to Participate in a Clinical Trial? from Patient Empowerment Network on Vimeo.
Cancer patients are living longer as a result of clinical trials that test new treatments, therapies, procedures, or new ways of using known treatments.
Watch along as a panel of experts from the Diverse Cancer Communities Working Group (CWG) Sustainable Healthy Communities, LLC, Baptist Memorial Hospital–Memphis, and the American Cancer Society Cancer Action Network (ACS CAN) explore the questions:
Laura Levaas:
Hello, and welcome to this Patient Empowerment Network Clinical Trial MythBusters program on a very, very important topic, what impact does Medicaid or Medicare have on a patient’s ability to participate in a clinical trial. My name is Laura Levaas, and I’m the lung cancer community manager for Patient Power. I’m also a Stage 4 lung cancer survivor. I’m two years out from diagnosis, and I’m also on Medicaid. So, this is a topic that’s really important to me on a personal level.
This program is produced by Patient Power. We want to thank the following companies who provided financial support to make this possible. While they don’t have editorial control, we appreciate the support of AbbVie Inc., Celgene Corporation, Daiichi Sankyo, and Novartis for their support.
Today we are joined by some really amazing guests, the first being Mark Fleury from the American Cancer Society Cancer Action Network out of Washington DC, followed by Jeanne Regnante, also out of Washington DC, and Jeanne is with the Diverse Cancer Communities Working Group, Sustainable Healthy Communities, and last but not least, nurse navigator Laura McHugh from the Baptist Cancer Center in Memphis, Tennessee. Welcome to all of our guests today. Thank you for joining us.
So, Mark Fleury, Mark is interesting because he has an understanding, a very deep understanding, about this issue from a regulatory and research perspective. He’s going to share with us what he’s learned about barriers in clinical trial participation and solutions to overcome some of those options.
Jeanne is going to share her viewpoint as part of the Diverse Cancer Communities Working Group. She helps share information about access to care treatment and inclusion in clinical trials for underserved populations.
And Laura McHugh who is joining us by phone (she is a friend of a friend of mine, and she’s really amazing) is a nurse navigator who has worked in the cancer space for 24 years. And she helps guide people in underserved communities every day as part of her working life. She works with Medicare and Medicaid patients on the daily. So, we’re looking forward to hearing from her.
So, back to our program, patients are living longer as a result of clinical trials that test new treatments, therapies, and procedures, or new ways of using known treatments for new ways. The myth here behind Clinical Trial MythBusters today is that being in a clinical trial isn’t covered by medical insurance particularly for Medicaid or Medicare patients. I know for me personally I’m interested in being in a clinical trial and I’m on Medicaid but I don’t even know what that means. So, I definitely need some guidance.
So, as we’re talking about this today, if you have any questions about if you’re a patient yourself or you’re a support person for a patient that has cancer or any kind of disease wanting to know about clinical trials on Medicare or Medicaid, we’re here to help you. Send your questions to questions@patientpower.info. So, viewers who are joining us today thank you again. If you’re on Medicare or Medicaid, what do you even do if you’re presented with the option to participate in a clinical trial to treat your condition? Let’s talk with Mark Fleury. Hi Mark.
Mark Fleury:
Hello Laura. Thanks for having me on.
Laura Levaas:
Yeah. We’re so, so grateful to have you on our program today because you have such a deep knowledge in this industry and on this topic. Can you tell us real briefly what exactly you do for the Cancer Action Network? And then I’d like to talk to you about barriers around Medicare and Medicaid.
Mark Fleury:
Sure. So, I work for the American Cancer Society Cancer Action Network. We’re the policy and advocacy arm of the American Cancer Society, and we focus on public policy, so that’s regulation, laws that impact cancer patients. And specifically, my work deals with policies around research and drug and device development, so how can we get those findings that happen in the laboratory into the clinic. And specifically, that goes through clinical trials. So, I’ve spent the last couple of years with a large partnership of other stakeholders taking a really deep dive into looking at clinical trials and all of the challenges patients have in getting themselves enrolled as a part of those trials.
Laura Levaas:
Good. We look forward to hearing more. Can you tell us a little bit about the current state of clinical trial participation in the US right now?
Mark Fleury:
Sure. So, there’s not real solid numbers, but we believe somewhere between 6 to 7 percent of US cancer patients participate in a clinical trial right now. So, that’s a fairly low lumber overall, and it’s also a fairly low proportion of the patients who would be interested. Research has found that between 50 and 70 percent of patients would say yes to participating in a clinical trial if they were asked. But unfortunately, many are not asked. And some of those who are asked are unable to enroll for a variety of external reasons. One of the things that we do know is that the people who do enroll in clinical trials tend to be less diverse and better off financially than the overall population with cancer.
Laura Levaas:
Okay. What are some of the barriers around Medicare and Medicaid patients who want to get involved in a clinical trial?
Mark Fleury:
Sure. So, obviously, first of all, there has to be a clinical trial for the patient based on your clinical characteristics. But assuming that that is the case, for a patient to enroll in a clinical trial, it’s critical that their insurance cover the routine care costs of that clinical trial. In other words, there are costs in a clinical trial that a patient would see regardless if they were in a clinical trial not. Say, for example, the first step of any treatment is a surgery and then the second step in normal care would be one drug but in a clinical trial it’s a different drug.
Well, regardless, you’re always gonna get the surgery. It’s important that insurance cover that routine part of the clinical trial. And unfortunately, historically, that’s not always been the case. Fortunately, in Medicare, they have covered that since 2000. That is not the case universally for Medicaid. And we can talk a little bit more about that later if you’d like.
Laura Levaas:
Okay. Perfect. I would definitely like to follow up on that topic seeing as I’m a Medicaid person myself. Can you touch briefly on what actually is different between the two programs in terms of clinical trial, the actual coverage? You mentioned routine care; is that for both programs?
Mark Fleury:
Well, so what’s important to note is that Medicare is a federally administered program. And so, there is one universal federal policy, and if you’re in Medicare, it doesn’t matter if you’re in Florida or if you’re in Idaho, the policies are identical. Medicaid is an insurance program that while partially funded by federal dollars, it’s administered by each state. And as such, each state has quite different policies. So, if you’ve see one Medicare policy, it’s uniform. If you’ve seen one Medicaid policy, it’s only relevant in the state in which you happen to be. So, it could vary significantly from state to state.
Laura Levaas:
Right. And so, depending on your state, you would need to follow up with your local maybe human services office to get specific questions answered.
Mark Fleury:
That’s correct. Yeah. There are some resources (and I think we can provide those at the end of the webinar) where generally speaking some states have passed laws or signed agreements in which their Medicaid programs have to cover those routine care costs in Medicaid. And we can certainly make available those states. But even within those states, it’s important to look closely at the policies. For example, in Medicare, Medicare also covers any adverse events. So say, for example, while you’re being treated, you had to be admitted to an ICU for heaven forbid a heart attack or something like that. Medicare pays for all of those unexpected expenses. And that coverage may vary state by state in Medicaid.
Laura Levaas:
Okay. Thank you, Mark. We’re looking forward to those resources. And for those of you watching, we will definitely be providing a downloadable guide with all sorts of resources to help you. Thanks Mark.
Mark Fleury:
You’re welcome.
Laura Levaas:
Hi Jeanne.
Jeanne Regnante:
Hey Laura.
Laura Levaas:
Okay. I can’t wait to talk to you about this. I have so many questions. I feel like we could talk for an hour. So, aside from the myth, I came into this thinking, “I’m on Medicaid; I probably can’t get into a clinical trial when and if I get to that point.” And then also, “If I am, it’s probably cost prohibitive because I’m on a fixed income.” So, is participating in a clinical trial expensive or cost prohibitive if you’re on Medicare or Medicaid like I thought? I mean, I know Mark touched on some of the issues, but what would you say? How would you answer that?
Jeanne Regnante:
For low-income patients, the cost of routine care and logistic support needed during a clinical trial is certainly a barrier to participation. And Mark pointed out some of these costs. But specifically in patients in rural communities, remote communities, aging population, children, patients with cognitive disabilities or physical disabilities. These are the same patients who have low access to care in general.
And covering the cost for routine care in a clinical trial and also the logistic support is a clear barrier to participation. So, there are clear barriers there, travel, housing, parking, paying for food, on having access to clinical trials not only for routine care costs like Mark alluded to but also logistical support being included in the clinical trials. So, all of those things are barriers.
Laura Levaas:
And would you say that seniors are also part of this underserved population?
Jeanne Regnante:
Absolutely, especially seniors that live alone, that are in remote rural areas in the United States. And remember, that’s 20 percent of the population, aging population, in those areas. So, clearly, we need to do better to engage those patients in care and also clinical trials.
Laura Levaas:
So, is it possible for us to draw any conclusions about how many people are on Medicare or Medicaid right now in the US? I did a little bit of internet sleuthing mainly through the Centers for Medicare and Medicaid, and it seems like there – the numbers that I came up with were pretty high, and it’s almost like 40 percent of the population is on Medicare or Medicaid. And so, has it –
Jeanne Regnante:
That’s absolutely true. Look at by the numbers, there is 329 million people living in the United States, and that’s according to the last census, which is a hot topic these days. There is 60 million people on Medicare, beneficiaries, and about 66 million people Medicaid. So, together, that represents about 40 percent of the population. And we have to remember kids. So, there are 7 million patients on CHIP, which is part of the Medicaid program. So, if you include percentage of people on Medicaid plus kids on CHIP, that’s 22 percent of the population.
Laura Levaas:
So, then circling it back around to clinical trial participation, how can we connect the dots here?
Jeanne Regnante:
So, I think one of the main issues is clinical trial sponsors and the clinical trial operations folks in the sites working together to do a better job of reaching out to patients, ensuring that everybody is asked to participate, and not just selecting the ones who people think can participate but asking everybody to participate and understanding the eligibility of all patients and working together to help to cover their costs to keep them in chart.
Laura Levaas:
Got it. Mark, I’m gonna pull you back into the conversation here for a minute. Can you touch briefly on what’s happening in the news right now around Medicare and Medicaid that could potentially impact clinical trials? Or maybe, Jeanne, you can speak better to that.
Jeanne Regnante:
I’ll let Mark take that one.
Mark Fleury:
Certainly, so, Medicaid traditionally has been a program that has served primarily children in many states, children and pregnant women. Starting close to 10 years ago with the passing of the Affordable Care Act, states had the ability to expand Medicaid eligibility beyond those kids and pregnant women. And now we see many states who have expanded the roles of Medicaid recipients to healthy adults who just happen to be lower income.
And so, what that really has changed is the number of people obtaining their insurance through Medicaid. Obviously, there has been a lot of – it’s a state-by-state decision whether or not Medicaid is expanded. The Affordable Care Act as a whole is hanging in the balance in a court case, and there’s obviously been a lot of discussion about whether it should continue or not. So, certainly, the number of people who are supported through Medicaid is a dynamic number, and that certainly is subject to changing policies that are still under active discussion.
I will say that Medicare, again, the coverage for routine care costs in clinical trials for Medicare, long-standing policy since 2000 that has been relatively stable. And I would expect that to continue unchanged.
Laura Levaas:
Thank you, Mark. And Jeanne, I’m gonna come back to you in a minute. For viewers that are watching, thank you for hanging in there with us. If you have any questions that you would like us to address in the program, we’ll get to that at the very end after we’ve talked with all of our esteemed panelists. Send your questions to questions@patientpower.info. So, now I would like to talk with Laura McHugh. Are you with us, Laura?
Laura McHugh:
I am. Thank you so much for having me.
Laura Levaas:
Hi. I am so excited to have you. I met Laura McHugh because she is a nurse navigator for a friend of mine who is ALK positive, which is the type of lung cancer that I have. And she works very closely with my friend and speaks so highly of Laura. So, I’m excited to have her on the program today. I wonder, Laura, if you could tell us why you think that clinical trials are important.
I wanted to share why they’re important to me personally. The medication that I’m on right now of course went through a clinical trial process, and it wasn’t even around before the year 2011. I was Stage 4 when I got discovered, which happens often with non-small cell lung cancer because many folks are asymptomatic. So, for me, what that means is if I didn’t have people going through the clinical trial process ahead of me, I probably wouldn’t be here today. So, on that level, is there anything that you can say why you think that clinical trials are important especially for people on Medicare or Medicaid?
Laura McHugh:
Absolutely. I believe that the clinical trials pave the way. All of the genetic testing that’s done now, all of the testing that’s been done all the way down to a molecular level. So, with these clinical trials and all of the things that have been tested, it’s opened up doors beyond what we ever thought we would have for lung cancer. There are so many opportunities and lines of therapy that you never had before.
And across the board, I think clinical trials and participation in clinical trials, all of the people that have done that, just opened the doors for all of the people in the future. We had a lady who was in her 90s, and she met all of the requirements, participated in a clinical trial. And all the way through, she said, “I want to stay on this. I want to do this. It may not help me, but it will help everybody after me.” And that’s just profound.
Laura Levaas:
Right. And so, Laura, tell the audience who you work with. I know that you specialize in thoracic cancers, and I know that clinical trials don’t always just focus on cancer. They deal with multitudes of diseases and conditions. But can you let us know who you work for because he’s famous in a way, right?
Laura McHugh:
Absolutely. I’m actually the physician nurse for Dr. Raymond Osarogiagbon. He is well known in the field of lung cancer. That’s our specialty. We have a multidisciplinary meeting every week and a conference. He sits on the board for NCCN and multiple, multiple other things as far as paving the way for lung cancer. I’ve been actually privileged to be his nurse since he came in 2005. We’ve built our practice together, and, oh, the changes are just – the changes that I’ve seen in the years that we’ve done this are amazing. And he is brilliant; he is. He’s known all over the world. And our focus is lung cancer.
Laura Levaas:
That’s great. Can you shed some light on the role of the patient navigator or the nurse navigator in what you do on a daily basis with your patients especially around clinical trials and folks who are on those government-supported insurances like me?
Laura McHugh:
Sure. So, we base all of our care – we – or I’m blessed to have a research department and two really dedicated research coordinators that I work with very closely. They’re not nurses like myself, but they do all of the coordinating for the care on the studies and all of the above from patients that are uninsured that are on Medicaid, Medicare, even private insurance. And what we do, we see primarily all of our new patients insurance allowing through our thoracic program.
So, I actually have a coordinator with me when I’m in clinic. And so, if we even think a patient is potentially eligible – not even just for a drug study. There are smoking cessation studies that we have, different protocols for that. So, it really starts at the beginning. There’s the surgical studies, different things like that. And every Wednesday is that clinic. And even during the week, if there’s anything going on, they come to our regular clinics as well and do follow up with the patient.
Laura Levaas:
So, I hear chatters here and there – when I bring up the subject of clinical trials, I hear things like, “Oh, trials are only for young people,” or, “Trials are only for old people,” or, “Trials are only for this type of person.” Can you speak to that a little bit?
Laura McHugh:
Wow. Yeah. Well, part of it is if you look at where we sit, there’s always – until now, in recent years, you heard about research but you didn’t really hear about research. So your older population, they were skeptical. It’s a different generation of, “Are you experimenting on me?” And part of your underserved communities, a lot of people didn’t know anything about it. They’re limited on getting to a physician in general much less being able to participate or being in a center that even focuses on clinical trials.
So, I think all of that in the past was very, very real. I believe now people are coming around and seeing, “Wow, anybody can do this.” I think people are still limited. Some people don’t have computer access. It’s hard in a day of electronics, we sit down and we can pull up all of this information, but not everyone can do that.
Laura Levaas:
Right. We do make a lot of assumptions when it comes to those type of factors. So, being that you’re a nurse navigator, I imagine that when you’re seeing a patient, you’re thinking, “Okay, is there a trial that this person might be good for?” I don’t want to say convince, but how do you help people learn about clinical trials and the importance of it because when you and I spoke yesterday, you said you want to make it clear to patients it’s always voluntary, “We’re not dragging anybody into a study. We want to make sure that you want to be there”?
Laura McHugh:
Absolutely. So, again, all of our patients are approved during a thoracic conference, and then all of the ones that we can bring to our clinic within our healthcare system we bring through that clinic, and if not, we bring them to our general oncology clinic. The physician will sit down with the patient. Of course, we’ve met with the coordinators, they’ve looked at everything. And they’ll come to us and say, yeah, they like this or this. The physician sits down and talks with them, and then I go in the room and talk with them as well. We tell them, “This is totally voluntary, something that’s open to you if you’re interested,” talk about it.
The coordinators go in and speak with them as well. We tell them to go home, “If you have any questions or concerns, call back.” And a lot of times they will. You have to be able to digest something. It’s a very overwhelming visit to walk in an oncologist office and be told all of this information and try to sort it all out on the spot. So, a lot of times they’ll go home, they’ll think about it, they’ll call back. Basically, communication, I just feel that’s the most important – it’s communication.
Laura Levaas:
Absolutely. So, to circle back a little bit, do you feel like it’s realistic for patients that are on Medicare and Medicaid to be in a clinical trial?
Laura McHugh:
Absolutely. I think it’s clinically appropriate for anyone that fits. If everything lines up the way it should and they’re able to participate, I think it would be wonderful if everyone would.
Laura Levaas:
This may seem like a silly question, but do folks on those programs get the same care as somebody that has a private insurance?
Laura McHugh:
Absolutely, absolutely from our standpoint. Of course, I’m answering from my institution and what I know that we do. And they do, absolutely. And sometimes there are challenges. I mean, we’ve had patients that were uninsured, underinsured. Again, Medicaid, you have to make sure – Medicare’s a little bit different again because all of the guidelines were set state to state. Medicaid’s different because each state has its own – and if you see someone in Mississippi, sometimes they can’t come across to Tennessee to go to the hospital or to do this. So, it’s a patient-by-patient basis, but overall, I think our patients are being treated, being offered clinical trials, and should participate if at all possible.
Laura Levaas:
Wonderful. And again, just to underline that clear and open communication is important.
Laura McHugh:
I think communication is No. 1 for everything. People are scared. They have questions. They don’t even know what to ask immediately. So, I think all of the support you can give – everybody has a knowledge base and everybody is empowered with that knowledge. Sometimes it’s all about just listening, communicating, and then answering any question they have no matter how simple it may be to us. To a patient, it’s a very profound thing. And it could be as simple as, “How am I going to get back and forth? Do you have a way to help me?”
Laura Levaas:
Thank you, Laura.
Laura Levaas:
Okay. I’m gonna circle back to the group and just ask some questions. I wanted to rewind with Mark and talk about Medicare Advantage. I am on Medicaid for about another year and I’m going to be rolled into Medicare, which under typical – I mean, I’m 44 years old, and so Medicare is typically for people that are 65 and older. And so, for me, it feels a little bit strange, and I’m like, “I just want to know how are they different.” And so, I have called my local CMS office, my local Social Security disability office. And I feel like I get different information. So, it’s sifting through everything. I just wanted to call out Medicare Advantage because you mentioned that. Can you expand on that and how it ties in with clinical trials?
Mark Fleury:
Sure, sure, happy to. So, traditional Medicare has multiple parts. You have Medicare Part A, which is the hospitalization, and Medicare Part B, which is the physician portion, and then a Medicare Part D, which is the drug portion. A few years back (understand the complexities of all the pieces and parts of Medicare) there was a decision to allow private insurance companies to administer all the programs together on an optional basis.
So, if you qualify for Medicare, you can use the traditional what’s called fee-for-service Medicare or you can go through a private insurance company. So, this might be an Anthem or a Blue Cross or another private insurance company like that who has been authorized to bundle all of your Medicare benefits together under one program. Now because it is a privately run version of Medicare, they’re required to offer the minimum benefits, but they do have some flexibilities in how they administer that.
So, a traditional fee-for-service Medicare, as long as a physician advertises that they accept Medicare patients, you can go anywhere you want to. If you live in Florida and you go on vacation into Los Angeles and become ill and you want to go visit a physician there, as long as they accept Medicare patients, that’s fine. Medicare Advantage on the other hand looks a lot more like private insurance in that they sometimes build closed networks, so, you can only go to certain systems or only go to certain doctors. So, that’s an important difference between the two.
And in terms of with clinical trials, how that’s affected, if you want to enroll in a clinical trial and you’re Medicaid Advantage, right now the current policy is for the portion of your care that is related to the clinical trial, you would revert back Medicare fee-for-service, traditional Medicare. That doesn’t mean that you are kicked off of Medicare Advantage, but anything related to that clinical trial would be handled from a payment and a billing standpoint through traditional Medicare.
So, if you’re on a cancer clinical trial, all those cancer clinical trial bills would go through traditional Medicare. But say, for example, you needed to get your flu shot or had a cold or something like that, that would still be handled under your traditional – or under your Medicare Advantage. You wouldn’t be kicked off of it. It’s just the treatment part of your clinical trial would go through traditional Medicare. So, a little confusing, but that’s where we are from a policy standpoint today.
Laura Levaas:
Okay. Jeanne, I wanted to ask you – and again, if you want to defer this to one of our other panelists, that’s A-okay. I’m thinking of folks who have some barriers around those additional costs in a clinical trial. Is it typical or acceptable for the, for example, pharmaceutical company or the sponsor of the clinical trial to pick up some of the costs that may not be covered under Medicare or Medicaid?
Jeanne Regnante:
The answer to that question is yes, it is appropriate for them to do so. And actually, there is an FDA guidance document (it’s Guidance for Industry) that actually reinforces their ability to do so because there has been some concern that covering costs like logistical costs or hotels or travel or giving people a gas card would create undue influence. So, I think the FDA put out a draft guidance that’s clearing that up and basically reinforcing the fact that pharmaceutical companies are able to do that.
I can tell you from our working group, we have 10 active major pharmaceutical company members in the Diverse Cancer Communities Working Group. And I asked them what they usually do in this space, and during the planning phase of the clinical trial, they go out to their sites to ask for a budget and ask them what they need in terms of routine care costs and also logistical costs. And the site sends that information in. And generally, the pharmaceutical companies cover those costs.
What I’ve found to be the case, which is interesting to me, is that the clinical trial operations team in the sites have a lot to do, they have a lot of work to do. And this was brought up to me by a couple of leaders in pharmaceutical companies, that what they’ve learned is that they also need to ask what capabilities do you need, do you need people support or FTE support to be able to adjudicate and track those costs at a site level and validate them and close them out and pay them. And a lot of times, the answer is yes and pharmaceutical companies are paying for those FTEs at the site. So, those costs are being covered when the site asks for support.
Laura Levaas:
Got it. So, since we’re talking about this topic anyway, that draft to FDA guidance publication, I’m gonna say it. It’s a really long title. It’s a mouthful. But I’m hoping you can break down a little bit of that. So, it’s called Enhancing the Diversity of Clinical Trial Populations, Eligibility Criteria, Enrollment Practices, and Trial Designs Guidance for Industry. What is the meaning –?
Jeanne Regnante:
So, I do want to paraphrase what the FDA says, but I’m gonna read the portions that I think are appropriate for this discussion. So, there’s a section in this guidance that was put out in June, and it’s a draft guidance, so, it’s open for public comment. And it focuses on study design and conduct considerations for improving enrollment in the industry. There’s a big section. I really would urge everybody on the call to read this section because I think it’s really great and progressive and quite empathetic of a major governmental agency to put out this guidance to industry.
It gives examples. It notes the burden for trial participants in remote and rural locations, for example, and also acknowledges the trial burden on the elderly, children, disabled, and cognitively impaired individuals who require caregiver assistance. So, what the FDA does in this guidance is they encourage industry to reduce No. 1 the number of study visits where possible and use electronic communications or mobile technology to monitor the patient for safety and efficacy because of the challenges of a number of folks in this patient population.
They also encourage industry to make sure that patients are aware of financial reimbursements, and that’s what Laura does. She manages their expectations in the recruiting stage and reinforces the fact – and the guidance also reinforces the fact that the FDA does not consider reimbursement of travel, lodging, parking, time, and other considerations to raise issues concerning undue influence. And they also reinforce that the amount of dollars that might be reimbursed should always be addressed with the local IRB. So, I think this is a very progressive guidance to give the industry so there are no questions on what they can and cannot do.
Laura Levaas:
Okay. Thank you very much. Laura McHugh, quick question, and Mark touched on this earlier in the program, what if something goes wrong in a clinical trial and a patient has to be hospitalized or treated for an unexpected reason? That’s covered, right?
Laura McHugh:
It has been for our patients. If it’s Medicare, what you always look at is standard of care. And the Medicaid patients that we’ve had, when they’ve been hospitalized, to my recollection, we’ve not had anyone that we’ve had difficulty substantiating why it should be covered. I mean, sometimes you have to go the extra step and go back and forth with the insurance companies or Medicaid. But we so far have been able to get it covered.
Laura Levaas:
I have a couple of questions that have come in from the audience, and feel free, Mark, Jeanne, or Laura. I’m assuming that a nurse navigator or a doctor is going to have the best information on where to find out about a clinical trial. But where are the best resources for someone to go? And again, I’m cancer focused because I have lung cancer and I work for Patient Power. And we support all types of folks with cancer. But there are folks that are in clinical trials that are not cancer related. Mark, what would be a source where somebody can find a clinical trial?
Mark Fleury:
Sure. So, in looking at the current cancer clinical trial landscape, we know that the overwhelming majority, probably 75 to 80 percent of patients, who end up on a clinical trial found that clinical trial because someone on their care team recommended it or someone from the clinical trial team approached them. So, it’s most common that someone from the medical system invites that patient. But we also know that a lot of patients get their cancer care at very small practices (they might be single-doc practices or things like that) where clinical research is not a normal part of what they do. And in that case, you would not necessarily hear about clinical trials from your nurse or from your physician.
In those cases, it’s up to an empowered patient to find the clinical trial on their own. And that’s obviously a little bit harder but certainly not impossible. And there are public-facing websites. Some of them are sponsored by the government, things like ClinicalTrials.gov where all clinical trials whether cancer or not are listed in the United States. And NCI has one, trials.cancer.gov, which is just NCI sponsored, which is the National Cancer Institute. So, it’s federally funded clinical trials.
But additionally, many patient organizations both have general educational materials about clinical trials – so, for example, the American Cancer Society at the website cancer.org has information about clinical trials. At the moment, we don’t have a matching window, if you will, but many patient-advocacy organizations also actively help patients one on one with matching. So, many of these are disease specific. So, there are lung cancer groups who you can call at the hotline, colorectal cancer, etc. Many patient-advocacy organizations will do the direct handholding and navigation if your own provider does not do that for you.
Jeanne Regnante:
I just want to add to that great list that Mark gave in terms of finding clinical trial sites. So, just a shout out to Stand Up To Cancer, they have a clinical trial matching site for any type of cancer. You can contact them, and they will actually match you to a clinical trial site in your area so you can give that information to your provider so they can call them to see if you qualify. Sometimes it’s difficult for anybody, myself included, to understand what clinical trial I might be eligible for just by looking at a site. So, it’s nice to have somebody do that for you.
Also, all the major pharmaceutical companies have if you happen to know about a given therapy or that you might be looking to be on because you heard about it it’s good to ask for help from somebody to find out what company makes it go to their website. And they all have clinical trial information on their sites as well.
Laura Levaas:
Thank you. And I’d like to share a little bit about my personal experience. When I was diagnosed, I was told about a Facebook group for my specific type of lung cancer mutation. And I learned about clinical trials from that group. And if I had never, like you said, Mark, been an empowered patient and been very curious in wanting the best care for myself, I probably would not have found out about those trials because some of them are just fly under the radar; they’re doing their work.
I think these are some great resources, and thank you for sharing those. One more question that I would like to ask the group before we – we have a couple of questions that came in from the audience, which is awesome. What is one solution (Mark, we’ll start with you) that you would like to put forth to address the issue of better clinical trial participation for Medicare and Medicaid patients which really, I mean, goes out to the larger group, I mean, really for anyone?
Mark Fleury:
Yeah. Well, I think specifically within the population of Medicare and Medicaid, as I mentioned at the outset, Medicare has a uniform national policy. So, someone like Laura, if she became a clinical trial professional in a different state, the Medicare policy would be the same it doesn’t matter what state you’re in. Whereas Medicaid, it varies so much, and that can be quite a bit of hurdle.
As I mentioned, I work in the policy and advocacy portion of ACS, and so, we focus on legislation. And so, one of the public policies that we have been advocating for (and there’s actually a piece of legislation before Congress right now), it would harmonize all 50 states plus DC Medicaid policies such that standard of routine care costs in cancer clinical trials would be covered in all 50 states in the same way and there wouldn’t be this ambiguity or uncertainty from state to state in terms of how it’s covered. So, that would be my one wish within this question if I could wave my magic wand.
Laura Levaas:
Yeah. That would very much clarify everything. Ms. McHugh, do you have a solution? What would you like to see happen to get more folks participating in clinical trials specifically those on the Medicares and Medicaids?
Laura McHugh:
Again, from my nursing background, a lot of it’s communication. And I think it’s sitting down with patients and explaining what some of the benefits are, what the risks are but what the benefits are because truly the benefits outweigh the risks. People worry about money and they worry about all of these things. Well, if it’s Medicare, it’s standard of care. Anything above and beyond, if there’s a problem, then you appeal back to the drug company, the provider.
Opening doors, communicating with patients, telling them, “You have a more active role in your own healthcare when you’re on a clinical trial. You’re empowered. You’re educated. You’re the first to benefit from this drug. You have your health professionals close. You’ve got a research coordinator, your nurse, your doctor, access to new drugs that may not be available.” I just feel like communication and – we’re totally sitting down with someone and explaining and taking some of the fear away from what people think about being on a clinical trial.
Laura Levaas:
I have a friend in the lung cancer community that was in a clinical trial. I don’t remember the specific drug, but she is still on it after it came out of trials. And she’s been on it for years, which is amazingly successful. And if not for that trial, she wouldn’t be where she is. And so, that’s just amazing. Okay. And then, Jeanne?
Jeanne Regnante:
You know what, first of all, I agree with what Mark said and what Laura said. First of all, it needs to be legislated. And No. 2, there needs to be better communication amongst trusted providers, trusted community leaders, primary care physicians to talk to patients to have them understand that a lot of these trials now include placebo versus standard of care and also help them to manage their expectations in terms of what will be covered in terms of their cost. And the folks that need to do that are the closest to the healthcare systems and patient navigators and care coordinators who can talk to an individual specific situation.
I think in addition to all those things, I think that generally industry needs to do a better job of placing trials where the patients are. Although that seems quite trite, patients that are in underserved communities or in rural communities, they don’t often have access to these cancer centers which are big academic centers that do a lot of these trials with big innovations.
And I think that we need to get much more creative to make sure that either the reach out from those academic centers go out to community centers or we do a better job placing clinical trials in community research centers to ensure better accessibility because really, logistical support, even if you cover it, even if the industry covers it or cancer care covers it or the American Cancer Society cover it or a laser X organization covers it, it’s still a challenge and a barrier.
So, I think we need to do a better job overall. The infrastructure needs to place trails where the patients are because cancers are not homogeneous across the United States. They appear in different places with higher risk and higher prevalence. And we need to use that data to place trials where the patients are.
Laura Levaas:
I agree. I’m actually located in Denver, Colorado, and I was doing some research for a blog post recently. And I went to American Cancer Society, Mark, just to look for what are the most recent statistics by state in terms of cancer. And obviously, it’s not lung cancer specific. But I was shocked to find out that Colorado has one of the highest percentages in the country of cancer occurrence. And I was surprised. So, Laura, would it be appropriate – this article that you sent me this morning from ASCO, would this be appropriate to include in our downloadable guide for our guests after the program? This was about the Affordable Care Act because we were talking about how people can get involved if they’re interested. What do you think, should we include this, Jeanne?
Jeanne Regnante:
Oh, I heard you say Laura.
Laura Levaas:
Yeah. Sorry.
Jeanne Regnante:
I think it’s a really well thought out piece to help folks understand how they can get involved with their legislators and understand that this act and this piece of legislation to advocate [inaudible] [00:50:28] specifically for patients that are on Medicaid in the United States so they can get the same benefit of routine care that Medicare patients get.
Laura Levaas:
I do have a question from Steve, one of our audience members, and he says, “Can Medigap Plan F help with paying for clinical trials? If the clinical trial accepts Medicare, would my out-of-pocket expenses be covered? I’m worried that any extra testing would be my responsibility.”
Mark Fleury:
Yeah. I’m happy to jump in with a quick answer on that.
Laura Levaas:
Okay. Thanks Mark.
Mark Fleury:
So, I mentioned a little bit before about what’s required to be covered. When you think about costs involved in a clinical trial, I’ll put them in three buckets. There is the normal routine medical care that you would get. So, for example, if you would normally get surgery and then followed up by some sort of chemotherapy, everybody’s gonna get the surgery regardless. And then say, for example, ordinarily routine care would be you would get a scan every six months after surgery, but the clinical trial because they want to collect more data wants to have a scan every three months instead of every six months. And the clinical trial is testing a new drug after surgery.
So, Medicare would pay for the routine costs, which would be the surgery and then a scan every six months. The clinical trial sponsor would pay for the drug, which is what you’re testing in the clinical trial. So, the patient doesn’t have any responsibilities for that. And since there’s basically twice the frequency of scans, the sponsor would pay for every other scan.
Now what’s important is that while Medicare covers the routine care costs, it covers them the same way it would cover any other cost. So, if you have a co-pay for a doctor’s visit that is routine, just because you’re on a clinical trial, that co-pay doesn’t disappear. So, if you have a Medigap plan that covers those co-pays, it should cover them the same way as if you were not on a clinical trial because the only responsibility for the patient is the co-pays of the routine care costs, and Medicare will pick those up.
So, anything that’s not normal from a medical standpoint will be paid for by the sponsor. Now as Jeanne aptly pointed out, if you’re coming in twice as often for tests, even if the test itself is paid for, you might be paying for the parking garage twice as often or gas to travel twice as often. And those are nonmedical costs that can add up, but they’re not really involved with insurance, but you can sometimes get money from the sponsor or other third-party support organizations like ACS.
Laura Levaas:
We have one more. Annie B, “I’m on Medicare. Where do I find a clinical trial in my town?”
Mark Fleury:
Typically, most of the ways that you find clinical trials, again, you can work directly with where you’re seeking care. So, if you have an oncologist, you can ask them about clinical trials. And if they conduct them, they will screen you for the trials that they have open at their site. If they don’t conduct clinical research, then you would either go to one of these public websites like a ClinicalTrials.gov, you could call an advocacy organization. There are several in the lung cancer space, and we can provide a number of different links to different matching engines or third-party organizations that could help match you. But clinical trials typically are not restricted based on insurance types. So, you would use the same search engines as anyone else would.
Laura Levaas:
Okay. All right. Well, I want to say thank you so much to our esteemed guests for joining us today. We learned so much today about clinical trials, Medicare and Medicaid, the different options. So many takeaways here. We will have a downloadable guide available as well as a replay of the program in case you’d like to dig in a little bit deeper.
Really, I think my takeaway from the whole program is that there are options out there. Clinical trials can be a great solution for your medical care of your disease. I personally am all for it. I know it’s a very personal decision, whether you want to participate or not. But I decided early on that I would definitely enter a clinical trial because I’m willing to sacrifice myself for future generations because there are people that came before me that did the same and I would not be here today if not for that. So, thank you again for joining us Mark, Jeanne, Laura. We very much appreciate you.
We thank AbbVie, Celgene Corporation, Daiichi Sankyo, and Novartis for their support.
It may come as a surprise to those who have not experienced cancer to learn that many cancer survivors suffer a form of “survivor guilt.” Survivor guilt is most often associated with a reaction to surviving a traumatic event that others have died in, for example, survivors of combat, terrorist attacks, natural disasters, or air crashes. Survivors feel guilty that they have survived the trauma and others – such as their family, friends, and colleagues – did not.
When the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV) was published, survivor guilt was removed as a recognized specific diagnosis and redefined as a significant symptom of post-traumatic stress disorder (PTSD).
It seems clear to me that a diagnosis of cancer fits both the description of survivor guilt and PTSD too. Cancer is a traumatic experience and no-one who survives treatment comes out the other side unscathed. As so many of us know, the end of treatment is not the end of dealing with cancer. When we’re going through treatment, we are simply trying to survive and don’t really feel the full emotional impact that being diagnosed with cancer involves. It’s often only when treatment ends, that the full impact hits us.
We may feel guilt at “surviving” when others have not. Dee Sparacio writes of her feelings at a time when a friend’s husband died. “How could I face my friend? How could I, NED [No Evidence of Disease] for 5 years since my recurrence face my friend. Would she look and me and think – why are you still here and my husband is gone?”
Karin Sieger also describes her experience of feeling guilty after a relative died from cancer. “A few years after my first cancer treatment, the terminal cancer diagnosis of a relative of mine, her gradual and then very quick deterioration and death filled me with the old feeling of guilt,” she writes. “In the presence of the bereaved mother my own mother felt guilty that her child is still alive. Cancer guilt can happen to anyone affected by cancer, including relatives and friends.”
We might feel guilty that our lifestyle choices somehow contributed to a cancer diagnosis. If we have discovered we carry the BRCA1/2 gene, we may feel guilty that we could pass this gene mutation on to our children. On her blog, Audrey Birt describes how “breast cancer guilt has stalked me. Even when I’ve thought I’d put that beast to rest, up it pops in various guises. My guilt as a parent for causing my family to suffer has been a long term one. Carrying the BRCA2 gene tipped me again into a spiral of grief and guilt but somehow staying with that and recognizing that for what it is has helped me move through it.”
I have also heard from patients diagnosed with an earlier stage disease, and patients who didn’t have to go through chemotherapy that they felt less “deserving” of sympathy. One of my blog readers wrote, “I felt like a fraud when diagnosed as in I didn’t need chemo just surgery, radiation and tamoxifen so I didn’t want to make any fuss when so many others had REAL cancer.”
Guilt may also arise from a sense that what I’m doing with my life must have greater meaning if my survival is to be justified. Another of my blog readers commented, “I feel guilty that I am not making more of my life. When I was going through treatment, I made all sorts of plans for what I would do when I finished. I was really going to make the most of my life, now that I’ve been given a second chance…but I am too tired and overwhelmed to do any of those things.”
If any of this sounds familiar to you, you are not alone. Feeling guilty at surviving cancer is a common experience and a perfectly normal reaction to what you have gone through. When I asked the question of my breast cancer community on Twitter “how you deal with survivor guilt?” I received some great answers. I hope you will find comfort and practical advice in the quotes below.
“Cancer guilt was related to my family. Years before my diagnosis, my dad died of cancer. So they all had to do it again with me though a different situation. I felt huge guilt about my dad for not understanding. Counseling helped a lot. I would recommend counseling for sure. Or friends who listen and allow you to air the emotion.” Julia
“I do feel a certain amount of “survivor’s guilt” since my cancer was stage 0 and no chemo or radiation-just surgery. Volunteering at a cancer support center helps me and inspires me filling me with hope – witnessing patients fortitude and determination to regain their health is so inspiring.” Susan
“The survivor guilt I felt was a sense of discomfort. I was quite possibly picking up someone else’s anger, frustration and despair at their own situation. But it is their situation, not mine. And since my second diagnosis I certainly have nothing to feel guilty about or to apologize for. We have a choice not do guilt, and also do not need anyone else to do guilt for us.” Karin
“As I’ve lost friends and colleagues to breast cancer I’ve grieved for them with an added complexity. What made the difference? Why did I survive and not them? In some ways I’m embarrassed I’m still here, four diagnosis later. It’s a form of madness to feel guilty you haven’t died, to feel guilty your treatment isn’t as bad as others, to feel guilty you’ve survived more than 20 years since your first diagnosis. I know it makes no sense but it’s easy to carry guilt along with everything else. But it serves no purpose and is fueled by a media that feeds a view of the cancer experience which is unrealistic, overly simplistic and laden with judgment.” Audrey
In his book, Travelling Light (The Columba Press) Daniel J. O’Leary quotes Bearwatcher, an Apache medicine man. “In the Apache language there is no word for ‘guilt.’ Our lives are like diamonds. When we are born we are pure and uncut. Each thing that happens to us in our lives teaches us how to reflect the light in the world; each experience gives us a new cut, a new facet in our diamond. How brilliantly do those diamonds sparkle whose facets are many, to whom life has given many cuts.”
So when you experience those feelings of guilt, contemplate the brilliant new facet in your diamond and reflect on the way that you can reflect that light in the world. You will best honor the memory of those friends who have died, by looking to the future and pledging to make the best life you can for yourself and those you care about. Life is a precious gift and you have been given the opportunity to recommit yourself to it. Now is your time to live; so armed with the lessons you have learned from your cancer experience, look to the future and shine with the brilliance of your diamond light.
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Karin Sieger
Is there a hierarchy among cancer survivors?
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
Last week, we hosted an Empowered #patientchat on managing the emotions of a chronic illness. The #patientchat community came together for an engaging discussion and shared their best advice and tips.
In a recent post, I talked about the trust that’s required for effective peer health discussions. That trust issue is even more critical when it comes to the science of medicine, and its inclusion in those peer health discussions – as in, is what’s being shared in peer health groups scientifically sound, or snake oil?
One of the downsides of giving everyone a voice – one of the foundational goals of the web, according to Tim Berners-Lee, its creator, “its true potential would only be unleashed if anyone, anywhere could use it without paying a fee or having to ask for permission”- is that everyone has an opinion and a place to express it, but opinions are not facts.
Which brings me to today’s web, where anyone with a smartphone can share an opinion, call it a fact, and gather a community around that opinion-in-fact-clothing. There is dangerous “fake news” mushrooming across the globe, thanks to the web, with the most egregious versions of it driving bad decisions about human health. One example of that is what’s called the anti-vaxx movement, where a debunked article by a disgraced scientist named Andrew Wakefield has continued to drive a mistaken belief that the measles-mumps-rubella (MMR) vaccine given to children under two years old causes autism. (Spoiler: it does not.)
That’s only one example. There are a host of others, including bogus cancer cures that proliferate on Facebook and YouTube, and recommendations that drinking bleach can cure autism. So what’s a patient community member to do? And where’s the clinician community on this issue?
In a powerful op-ed in the New York Times in December of last year, “Dr. Google Is a Liar,”cardiologist Dr. Haider Warraich said that Silicon Valley needs to own their part of this problem, that journalists need to do a better job of covering health and science news, and that the scientific community itself needs to be more transparent and easy to understand when they talk about new discoveries.
It turns out that the cardiology team is playing hard on the side of truth here, publishing an editorial in February 2019 in more than two dozen cardiology-related scientific journals around the world, saying that the medical community needs to help the public vet the message they’re getting from whatever sources they use for health information. The American Heart Association even has a short and snappy video – it qualifies as a thirty second ad that could run on television – “5 tips for finding trustworthy health information online” that recommends: Top of FormBottom of Form
The clinician community has joined the fight against fake news in medical science. The patient community needs to make the same commitment to fighting junk science in our circles. What should be on our list of recommendations for avoiding falling for “fake news”? And should we develop a code of ethics for patient community leaders that covers the information we share online?
I welcome all suggestions, and I’ll include them in a future post. Just hit me up on Twitter, using the hashtag #PtLeaderEthics, or via email. Let’s fight fake science news together, shall we?
When Marybeth heard the word “cancer” she felt like the floor had fallen out from under her. She had a million questions. So many, in fact, she was too overwhelmed to ask a single one the day she was diagnosed. However, as she absorbed the diagnosis and read the materials her doctor had given her, she began to have non-medical questions. Such as, what would happen to her job if she needed a lot of time off? How much of the cost of treatment would be covered by her insurance?
Marybeth debated telling her boss of her diagnosis. She wanted to know her options for taking time off, and if they’d be willing to let her work from home sometimes. However, she was also afraid of how her boss might react. She’d been working at the company for less than a year. And Marybeth was a single mom of a teenage son. She relied on her job to pay the bills and provide medical insurance. She was terrified her employer would cut her hours or even let her go.
Fortunately for Marybeth, people with cancer are protected by the Americans with Disabilities Act (ADA). It is illegal to fire someone because of a cancer diagnosis and employers must provide reasonable accommodations for employees who have cancer. However, even with legal protections in place, it’s important to prepare before telling your employer of your diagnosis.
Marybeth waited until after she’d met with her oncologist and agreed on a treatment plan before telling her boss. To her surprise, her boss seemed supportive and offered to work with her on adjusting the work schedule and asked human resources to send Marybeth information on taking FMLA (Family & Medical Leave Act) leave.
However, it’s not enough to know if you’ll have surgery or how many chemotherapy sessions you might need. Before talking to an employer, you should know how the treatment plan might affect you physically and emotionally. Your doctor can provide insight into how most people respond to treatment. It’s also a good idea to read or listen to patient experiences to get an appreciation for how diagnosis and treatment might affect energy level, ability to concentrate, and ability to handle stress or fight off an infection. The Patient Empowerment Network provides numerous resources to equip cancer patients and their caregivers with that kind of robust perspective.
While there’s no guarantee your experience will be like someone else’s, the more you know about the possibilities, the better prepared you are to talk to your boss. There will still be unknowns and you should explain this to your employer. It’s ok to say, “I don’t know.” Ideally telling your employer about your diagnosis is just the first of several discussions. Consider scheduling ongoing conversations with your supervisor to evaluate your needs and adjust.
Most people find it helpful to write down what they want to say before their first time sharing information about their cancer. When talking to an employer you should cover:
The more you know, the better you’ll be at communicating what you expect and what adjustments you and your employer might need to make. You needn’t ask for these accommodations immediately. But it’s worth knowing what kinds of accommodations might be available.
The most obvious accommodation during and after treatment is time off. Cancer patients should consider not just the time off for surgery and medical appointments, but time to deal with fatigue or secondary illnesses. Some cancer patients request extra breaks during the day to rest or take medicine. Other common accommodations are temporary or permanent reassignment to less physically demanding roles, or permission to work from home. The federally funded Job Accommodation Network can provide a wealth of suggestions. It is often the employee who identifies the need and the most appropriate accommodation, not the employer, so familiarizing yourself with possible options is helpful.
An employer is not required to grant every requested accommodation. They only need to agree to accommodations that don’t create a hardship for them. They can require essential job duties be fulfilled and they don’t have to lower productivity requirements. Your employer may counter your requested accommodation with an alternative that is easier for them to implement. Most employers are willing to work with their employees to find an arrangement that works. However, the burden for educating them about your needs and accommodations to support your success may fall to you.
You don’t have to tell an employer about your cancer at all. An employer can’t ask about an employee’s medical situation unless they believe a medical condition is negatively affecting job performance or workplace safety.
However, your employer needs to know you have cancer for you to be protected by the ADA. It is within your employer’s rights to ask for medical documentation if you request disability or medical leave.
Once you have decided you have enough information about what to expect during and after treatment, start by telling your direct supervisor. He or she may ask you questions you aren’t able to answer and that’s ok. Your goal is to open communication and set expectations. Don’t expect your supervisor to be familiar with your protections under ADA. However, your company’s Human Resources department should be. If your supervisor doesn’t inform HR after you disclose your diagnosis, you should.
After that, it’s up to you who you would like to tell. Your employer is not allowed to tell other employees about your medical situation, not even if coworkers notice you receiving accommodations and ask about it. It is up to you which coworkers to tell. Some people tell only a trusted coworker. Some people want everyone they work with to know.
Decide how much information you want to share. If you are comfortable sharing your story, this is a great opportunity to educate others. People will likely make assumptions about your ability to work, or your long-term prognosis. They may comment on changes to your physical appearance or ask personal questions. Most people have beliefs about cancer that are incorrect or based on experiences that have little to do with your diagnosis and treatment. People are rarely intentionally nosy or hurtful. However, if you feel comments or questions are excessive or constitute harassment, report it to your company’s human resources right away. This is a form of discrimination and your employer has an obligation to address it.
Even if your employer responds well to your initial conversation and grants accommodations, it’s a good idea to keep track of discussions you have with your boss or human resources office. Keep copies of emails related to your diagnosis and requests. Also, keep copies performance reviews or other documents related to your job performance. This documentation will be helpful if you feel your cancer diagnosis or accommodations are ever held against you.
Discrimination can sometimes be subtle, such as being excluded from meetings or being disregarded for assignments or promotions. You have 180 days from the date of an incident of discrimination to report it to the EEOC, which is another reason to keep records.
Marybeth wasn’t aware of all the protections of the ADA and that those protections continued even after she’d completed her treatments and returned to work full time. Six months after her last chemotherapy session, she still found herself struggling to keep up with her workload. She was exhausted and felt frustrated by her coworkers’ lack of understanding. Marybeth says she didn’t want to be known as “the woman with cancer” and she figured asking for more help would be held against her. She struggled on but her job performance suffered, eventually resulting in a poor performance review and job dissatisfaction.
“I don’t know if things would’ve been different for me if I’d been more willing to talk to my boss about how I was feeling and to ask for more adjustments to my work. I’d like to think so,” said Maryann. “I hope I never have to go through treatment again, but if I do, I know I will be more open to talking to my workplace about it.”
It may be difficult to talk about your diagnosis and expectations with your boss. However, it is almost always the right thing to do to protect yourself. Armed with an understanding of your potential needs and rights, you are in a better position to take control of your cancer and your career.
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Americans with Disabilities Act
Marcia Evans is a writer and communication manager with 20 years of experience in public affairs and advocacy. Her focus is on helping organizations create communication strategies that make meaningful connections with their followers. She writes in honor of her uncle, who lost his battle with small cell carcinoma in 2018.
Family caregivers spend an average of 24.4 hours per week to take care of their sick relative. In the past, family caregivers usually remain invisible using healthcare encounters and are usually not identified as a unit of support in the health records of patients. However, in recent years, studies in the United States showed that the implementation of family-centered approach is beneficial for persons with serious illnesses as well as the caregivers, specifically in pediatric and geriatric patients. Here is an overview of its core concepts, benefits, and barriers.
The family framework is a simple, low technology approach in providing holistic patient care. According to the Institute for Patient- and Family-Centered Care, there are four core concepts of patient- and family-centered care. The first core concept is dignity and respect, which means that health care professionals must listen and respect the decisions of the patient and the family. The second core concept is information sharing meaning that patients and families should be given complete and accurate data so that they can make informed decisions. The third core concept is participation. The patients and families are empowered through ensuring they participate in the decision-making process. The last core concept of collaboration highlights the need for all individuals (patients, families, and health care professionals) to work together for the betterment of the patient.
The major benefit of this approach is the shift of the control and power of patient care from the individuals who deliver it to the ones who receive it. This approach recognizes the autonomy of patients, which is a major concept in bioethics and rehabilitation. The importance of families in promoting health and well-being of every member is also emphasized. In previous years, family-based treatment modalities such as meditation or mindfulness have been shown to have benefits for the whole family. For instance, it has been demonstrated that such approaches are effective in addressing eating disorders and depression among children.
By listening to the patients and families about their experiences and hearing what’s important to them, healthcare professionals can improve their delivery of care. In a study, researchers found that parents’ satisfaction increased as much as 70% after the implementation of family-centered care. These professionals also learn how care systems work and not just how they are supposed to work. As such, this approach is mutually beneficial to both health care professionals and patients as both of their needs are fulfilled.
Since 1993, family-centered approach has been a priority for hospitals, states the Institute for Healthcare Improvement. Nevertheless, there are numerous barriers to its successful implementation. For example, the different meanings of family-centered care in the discipline causes confusion to how it should be practiced. Moreover, the roles and boundaries of the health professionals and the family remain unclear.
Most importantly, the attitudes, values, and perspectives of healthcare professionals also affect the use of family approach in hospital settings. One of the things that influence their attitudes is their lack of knowledge of how to implement it. Some professionals also mentioned that they do not support this approach because the outcomes are difficult to measure.
The main objective of family-centered approach is to respect the patient’s decision about his or her care and to emphasize the role of the family in the treatment. While there are advantages to the approach, there are still barriers on how it can be implemented in reality. Further research is warranted to determine its effectiveness and to help hospitals transition to a patient- and family-centered approach.
