What is a Carepartner?

The words we use matter. The word caregiver is often confusing for patients and their families, especially in the context of limited English proficiency and language barriers, as the word “caregiver” in health care is used interchangeably to refer to the doctor as well as to non-clinical individuals who are caring and supporting a patient.

Patients living with chronic illness, disability, rare disease,  life-altering, and life-limiting diagnoses often describe feeling a sense of a loss of autonomy and independence. They may feel guilt for needing the support of loved ones and not being able to fully care for one’s self or fulfill household obligations due to their health conditions. Many patients say they dislike needing a caregiver and despise the word. Needing a caregiver is a constant reminder of their illness and loss of dignity. The word “carepartner” is more positively received. A carepartner is a spouse, life partner, sibling, parent, family member, friend, or colleague who is there to support a person living with their diagnosis(es). A carepartner can be thought of as a team mate and support who is there, in sickness or in health; their actions defined by love and empathy, not sickness.

What is Unblock Health?

Unblock Health is the key to the top 4 barriers patients, carepartners, and consumers face in making informed, empowered decisions about their care. The new roaring 20's will be the era patients fight back against data blocking, armed with Unblock Health. Unblock Health is the answer to addressing information blocking where patients are, in their local communities. More details here: https://www.unblock.health/blog/what-is-unblock-health/

The New Roaring 20's

As the 2020 New Year celebrations come to an end, our real work begins. These Roaring 20's will be the era of the patient & carepartner, with our unmet needs, barriers, and challenges being brought front & center.

We are a force to be reckoned with. Our lived experiences and expertise are a secret weapon & a solid business strategy for those looking to authentically transform health care to invest in.

Navigating the chaos that is our health care system while living with a life-altering diagnosis or multiple co-morbidities can literally break a person over and over.

Remember, we are:
✨Bigger
✨Bolder
✨Louder
✨Fiercer
✨Brighter
✨Faster
✨Kinder
✨Smarter
✨Stronger
✨Unstoppable

TOGETHER

Happy New Year!

I wish you a 2019 that is bigger, bolder, brighter. A 2019 that takes 2018's failures, pivots & crafts them into rewarding successes. A 2019 filled with meaningful connections, conversations, and thought-provoking work. I wish you a 2019 filled with kindness.

I'm thankful for a 2018 filled with heart-racing opportunities, endless incredible people to enrich my life and community, and the joy and challenges my work in patient advocacy brings. I'm grateful for every devastating rejection, failure, and the endless naysayers and dishes of criticism 2018 brought. You've made my voice & drive that much stronger.

Dear 2019, I'm laser-focused. Who's coming with me?

Shattering the Mold: It’s Time for Reality Conferences

Thematically and structurally, the majority of healthcare conferences are all predominantly (sadly) the same. A celebration of successes, achievements, and pats-on-the-back. Shows of sheer brilliance. Accomplishments beyond the average person’s wildest dreams. Demonstrations and exhibits that are mesmerizing to the beholders’ eyes. Thought leaders in sharp suits with pocket squares or classic pumps are illuminated in spotlights, while the audience sits in silence with their eyes fixated on the stage. Reporters are scattered throughout the room, furiously taking down words of triumph for their next breaking press release.

Healthcare conferences are addicted to demonstrations of achievement and, in ways, rightfully so. Healthcare and medicine are not for the faint of heart. Grit, resilience, foresight, dedication, blood, sweat, and extreme sacrifice pave the way to success. But why do we continue to omit shortcomings, barriers, failures, and the herds of pink elephants that stand among us? Why do we continue to solely feed attendees with promises of potential, displays of futurism, and innovations that push the boundaries of tangibility, while avoiding discussions of real-time, foundational problems that need attention NOW? Poverty, mental health, addiction, substance abuse, drug prices, healthcare costs,barriers to access, fax machines, poor coordination of care, lack of universal access to information, food deserts, impact of tobacco and alcohol, and social isolation only scratch the surface of the daily realities of those struggling to achieve true wellness. Bionic contact lenses and sending a Tesla to Mars aren’t going to help any patient today or tomorrow.

Highly respected conferences have some of the most admirable, powerful, and influential people in attendance as well as gracing their microphones. How ironic is it to have the likes of these people spending the majority of their time at a conference sitting in silence, focused on listening to unidirectional informational flow? Phones are encouraged to be silenced. Live tweeting and sharing of information from presentations is some cases still considered controversial. Limited networking breaks offer small talk over wellness beverages or individually brewed espressos topped with the endless search for a free outlet to charge whatever electronic device is on the brink of dying. This is not innovation. This is not disruption. The is not advancing anything besides perhaps personal agendas.

What should the purpose of conferences be? Is there anything more valuable than making connections, bridging silos, and collaborating to dismantle barriers in real-time? Have you ever attended a conference and witnessed something actionable happen on stage? What if participating speakers were encouraged to address pressing problems as part of their speaking commitment? Taking a play from the show, Who Wants to be a Millionaire, what if speakers were offered lifelines, such as phone-a-friend, to begin connecting the right people and influencers to address major problems patients are struggling with right now? I guarantee the majority of invited keynoters have the necessary connections within the confines of their contacts to truly move the needle. What if leaders with solutions could dial in virtually and be given the opportunity to join problem solving sessions? Imagine if phones at conferences were ringing off the hook like on a Wall Street trading floor, with solutions and ideas pouring in, truly connecting the dots. What if the criteria for giving a keynote address was driven by which attendee connected the most dots in real-time by deadlines set throughout the duration of a conference? Talk about flipping the script! Keynote speeches would then become real-time draft plans as to how a problem affecting patients was going to begin to be solved. Uncharted and rough dirty? Yes, but all of the world’s most brilliant diamonds start that way.

Is this going to be well scripted and seamless? Far from it. Could this get messy? Absolutely! Are there going to be disagreements and heated debates?I hope so. Tough times call for tough discussions. Reality TV has produced some of the most memorable and highly acclaimed TV shows. Is it time to consider reality conferences in healthcare?

There are only 2 camps of people in healthcare: those who want to transform it and those who just want to talk about transformation. How can we create and execute a never-been-seen-before conference that gives those that reallywant to roll up their sleeves, connect the dots, and truly get stuff done an opportunity to showcase what they are made of and capable of doing?

Grace Cordovano, PhD is a professional oncology patient advocate, patient experience enhancer, and Citizen Health 2018 Ambassador.

Follow her on Twitter: @GraceCordovano

Direct-To-Consumer Genetic Tests: Who Are They REALLY Benefitting?

The FDA approved the Personal Genome Service Genetic Health Risk (GHR) Report for BRCA1/BRCA2 (Selected Variants), the first direct-to-consumer BRCA test by 23andMe that may be performed in the comfort of one’s home without the need for a prescription. Press releases and even the FDA announcement do not thoroughly detail the many limitations and conditions associated with the test. Individuals many incorrectly interpret what the test’s results may show or may over-extrapolate how the test is meant to be used. In healthcare, it is of essence to be considerate of people’s health literacy levels so as to encourage informed decision-making based on factual, credible information. It’s also important to be fully transparent as to how the test’s results are benefitting the actual company, in this case 23andMe, as well as other third party companies. This needs to be spelled out front and center. Not just buried in the legalese of the terms and conditions and privacy policy.

Here are the limitations, caveats, and fine print that everyone needs to know about regarding the latest FDA approved 23andMe offering:

1. The test only detects 3 out of more than 1000 BRCA mutations. BRCA1/BRCA2 breast cancer gene mutations are most common in Ashkenazi Jewish populations. This test does not benefit the general population.
2. A negative result does NOT rule out the possibility of other BRCA mutations which may pose an increased risk in cancer.
3. Not all cancers are BRCA mutation driven or hereditary. Some cancers develop sporadically. A negative result does NOT mean one has no risk for developing cancer.
4. People who test positive should seek the guidance of a medical professional and understand that they will most likely be retested in a supervised, clinical setting.
5. A positive test result may lead to fear, anxiety, and distress.
6. Patients and clinicians should NOT make medical decisions, such as opting for prophylactic surgery or anti-hormone therapy, based on 23andMe test results.
7. This test is NOT a substitute for consulting with your doctor for cancer screenings, genetic counseling, or managing lifestyle factors that may impact one’s cancer risk.
8. Anyone with a strong family history of cancer should seek professional medical guidance for appropriate management.
9. Your web behavioral, genetic, or self-reported information may be used by the company internally to improve their services or sold to third party companies for research, marketing and advertising, or commercial purposes. Read the privacy policy and the terms and conditions.

The test may only benefit a very small population of people, specifically those of Ashkenazi Jewish descent, however it is being marketed and offered to the general public. People will purchase the test for a variety of reasons. Regardless of what their reasons are, who the test benefits (or doesn’t), all of the people who submit their saliva samples for testing will have their data and results utilized in one way or another or sold to third party vendors for commercial purposes. Any improvements in company services, commercial, or research advancements that happen as a consequence of using customer data offers zero recognition or compensation for their “participation”. In the end, who really gets the most benefit?

My (REJECTED) Letter to the Editor

          As a researcher, I can fully appreciate the review process and recognize that there is simply only so much space allotted in any given journal. My recent submission was a Letter to the Editor of the New England Journal of Medicine (NEJM) regarding a perspective “Saying Goodbye to Lectures in Medical School- Paradigm Shift or Passing Fad?” by Schwartzstein et al, on alternatives to traditional teaching formats in medical school.  Given the elite status of the NEJM, I wasn’t entirely surprised to receive a rejection. Perhaps my simple little opinion wasn’t written in cream-of-the-crop style. The more concerning alternative is that the submission was rejected because it was not representative of the masses of submissions received or the popular vote. Perhaps no one else feels strongly about incorporating patients and care partners in the design and delivery of medical education. I find this gravely alarming.

            Revising the manner in which knowledge is delivered, i.e., virtually, in Q&A sessions, flipped classrooms, augmented reality, etc., addresses only part of the issue of sustained learning in medical trainees. It is important to incorporate the power and influence of storytelling to enhance the medical education experience. It is important for curated curricula to foster life-long learning not only in students, but also in the medical experts responsible for shaping young minds.  Current medical curricula offer learning as a 1 way street with information being disseminated from professors to students. Medical education is missing patient and care partner stories and experiences. More on that here: http://www.kevinmd.com/blog/2017/07/every-medical-student-needs-hear-patient-caregiver-stories.html

            Here’s my formal rejection from NEJM in response to my submission below. Does anyone else believe in the power of incorporating patient and care partner stories to enhance medical education?

Dear Dr. Cordovano,

I am sorry that we will not be able to publish your recent letter to the editor regarding the Schwartzstein article of 17-Aug-2017.  The space available for correspondence is very limited, and we must use our judgment to present a representative selection of the material received.  Many worthwhile communications must be declined for lack of space.

Thank you for your interest in the Journal.

Sincerely,
XXXXXXXX Editor

(Original Submission) To the Editor,

It was disappointing Schwartzstein et al. (Aug 17 issue)1 did not include patients and care partners in the design, development, and delivery of medical education. Students are only learning part of the story from cadavers and medical experts at respective institutions. We must foster the creation of curricula that are not only engaging, thought provoking, and evidence-based, but also unite patients and physicians, promote shared-decision making2, and delivery of compassionate care. Patients and care partners bring an authentic breathe of experience and perspective3 that textbooks and medical experts cannot impart or convey. It’s time to invest in participatory medicine and welcome patients and care partners to share their experiences living with disease significantly earlier into the careers of medical trainees. This model offers a unique opportunity to foster interactive, collaborative learning for all involved: medical trainees, seasoned medical experts, and patients and care partners. A change in the culture of medical education is more profound than revising curricula alone.

References:

1.     Schwartzstein R, Roberts D. Saying Goodbye to Lectures in Medical School- Paradigm Shift or Passing Fad? N Engl J Med 2017; 377: 605-607

2.     Barry M, Edgman-Levitan S. Shared Decision Making- The Pinnacle of Patient-Centered Care. N Engl J Med 2012; 366: 780-781

3.     Awdish R. A View from the Edge. N Eng J Med 2017; 376: 7-9

The Fix for Healthcare: A Tsunami

Dearest Medical Schools,

            Recently, at the 8th Annual Patient Experience Summit, Adrienne Boissy, MD, MA, Chief Experience Officer at Cleveland Clinic Health System, encouraged conference attendees to “dream bigger”.  Since then, I’ve been plagued with many sleepless nights and perhaps what many will consider borderline insanity.  I assure you that what I’m going to ask of you today is truly my version of dreaming bigger.  So here goes.  It’s time for you to invite patients to speak to promising young doctors during their time at your respective schools.  Not just for a volunteer opportunity.  Not just for a Patients’ Day event.  Not just for a photo-op for your quarterly donors newsletter.  You need to invite patients for regularly scheduled story sharing.  Don’t roll your eyes at me just yet.  It’s time to invest in patients and their stories to enrich your curated curriculums.  To clarify, by invest I mean not only to welcome patients to your exceptional facilities but to compensate them for their time as well.  Please don’t stop reading just yet.

            Your students are only learning half of the story from the cadavers and medical experts at your prestigious facilities.  For medical students to truly learn and understand the other half of the story, you will need to depart from the way things have always been done and revamp the medical school experience.  My dearest medical schools, you need to change the lens your students are looking through to learn. They need to understand the human repercussions of the diseases they so astutely diagnose.  They need to share and revel in the joys and tribulations of a parent whose child was miraculously saved.  Your young doctors need to experience the recollections of a spouse who tragically lost their loved one to a difficult battle with cancer.  Your knowledge hungry students need to hear first-hand the accounts of those living with painful, chronic diseases. Your students need to see the effects of avoiding difficult end-of-life conversations and the unnecessarily prolonged deaths adult children see their aging parents endure.  Students need to hear about successes of truly delivering consistent, quality care and the difference simple eye contact and active listening to a patient truly makes.  Young doctors-to-be need to hear first hand about near death or true back-from-the-dead experiences. It’s one thing to learn about death from a textbook or to see a patient code in the hospital. It’s another thing to be in a pin-drop silent room and hear the riveting account of those who have experienced their own death and have shockingly fought all odds to come back to tell their story.  These young, curious, motivated minds need to hear the accounts of everyday patients and the challenges they routinely face.

            There are two sides to every story.  Your students need to hear from those “non-compliant” patients that show poor medication adherence to understand their financial struggles, their difficulties getting to appointments and to the pharmacy, their challenges with suffering from debilitating side effects.  We can’t continue to ignore the impact of social determinants of health on patients.  Your young doctors also need to hear stories about wonderful care that’s being delivered across the nation, care that nurtures, supports, and empowers patients because there are incredible things happening everyday.  We need to inspire them because not all is lost and forsaken.  Your students also need to hear about terrible, undermining, exploitive care.  Care that left patients hurting, feeling lost, abandoned, taken advantage of, and hopeless.  Poor care and communication that brought patients back to the ER or ended up in medical errors and death.  Don’t forget about including doctors and nurses who have reversed roles and become patients themselves.  Their experiences will be uniquely different yet completely eye-opening.  Their takeaways will be pertinent.  I can assure you, the gut-wrenching emotional roller coaster that comes with the accounts of patients, such as Dr. Rana Awdish, Director of the Pulmonary Hypertension Program at Henry Ford Hospital and author of “In Shock”, Mary Elizabeth Williams, author of “A Series of Catastrophes & Miracles”, or of Dr. Lucy Kalanithi, widow and caregiver of Dr. Paul Kalanithi, “When Breath Becomes Air”, are priceless.  But these accounts only scratch the surface.  We shouldn’t only focus on well-published stories.  We need to seek the activated patients in our local communities, amplify their voices, and listen.   Really listen.  It’s in their messages that we will find solutions to heal our broken healthcare system.  Dearest medical schools, I ask you to be the early adopters our healthcare system is crying out for so desperately.  Give your students a medically cutting-edge education that is bathed in the human experience.  We need to dispel the myth that there simply isn’t time for such initiatives.  Time is always there.  It’s priorities that need to be adjusted. Be the disrupters in healthcare that reintroduce empathy into the sanctity of the doctor-patient relationship at it’s earliest kindling.

            Let’s not forget to include patient caregivers as they are the boots-on-the-ground at home when there isn’t a doctor or nurse in sight. (Don’t roll your eyes at me again.)  They dedicate more time to the patient than any individual doctor or nurse ever will.  Caregivers know the patient better than any doctor or nurse, and sometimes, even better than the patient themselves.  Invite them to share their stories, their trials, their heartaches, their happiness, and their grief.  I assure you the results will be lasting and profound.  If you still need convincing, you need to listen to Regina Holliday, founder of the Walking Gallery, speak.  Regina’s passion is fueled from her experiences advocating and caring for her husband, Fredrick Allen Holliday II, who died at 39 years of age from kidney cancer.  Together they faced endless complications stemming from poor care coordination, medical errors, lack of transparency, and poor access to his medical records.  Regina’s words will reverberate through your soul.  Again, there is a sea of caregivers waiting to share their stories.  I urge you, don’t wait a second longer to start reaching out to them.

            We need to start a movement, incorporating patients’ and caregivers’ stories and experiences into medical education and healthcare design. It’s a blatantly missing piece.  As you can see, without it healthcare is falling apart at the seams.   This can’t start and stop at medical schools.  We need to extend this to nursing students and medical technicians.  Anyone that plans on working in healthcare, from the chief of the department to the nurses, to the phlebotomy technician, to the custodial or food and beverage staff, every individual needs to hear patient and caregiver stories. Dearest medical schools, I’m asking you to be the drop of water that disrupts the surface of healthcare, the ripple of which will reach far and wide, outside of medical and nursing schools, outside of hospitals. If many medical schools participate, that ripple can become a tsunami. As far as I know, tsunamis are unstoppable.

            Empathic design and patient-centered care are buzzwords of all the rage. Empathic design isn’t about the soothing shade of white paint selected for a new hospital building.  It isn’t about incorporation of more natural light and miniature indoor gardens into hospital foyers. Patient-centered care isn’t just about improving Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) scores. Dearest medical schools, do you want an innovative, esteemed educational program that truly embraces empathic design and patient-centered care?  Invest in patients and their caregivers and let me know how it goes.  I bet you a dollar it’s going to be simply earth shattering and amazing.  Looking forward to witnessing the tsunami.

Best wishes,

Grace Cordovano, PhD

Cancer, Love, And The Pink Elephant In The Room

     We are living in a world that is resolute to cure cancer. From the Cancer Moonshot to precision medicine, to liquid biopsies and the quest for earlier detection, to innovative technologies and cutting-edge equipment, to the incorporation of artificial intelligence (AI) to analyze the vast quantities of data generated daily: it is a full-on war to eradicate cancer.  No one can doubt the wonder and excitement transpiring in the cancer space everyday. There is nothing better than reading reports of patients with terminal cancer attaining miraculous remissions, especially when all options were exhausted and all hope was seemingly lost.  And yet, in the process of being full steam ahead to end cancer, we’ve lost sight of a few integral parameters in the cancer treatment paradigm. In the focus to eradicate cancer, patients’ sexual health and self-image have fallen off to the periphery and become the pink elephant in the room.

     Cancer has a significant impact on patients’ sexual health and conceptions of self-image. Most cancer patients say that their doctors avoid talking about sexual health and self-image concerns and they don’t have the courage to mention it. Even the National Comprehensive Cancer Network’s (NCCN) website, under the topic “Sexual Health for Cancer Survivors” literally states “Doctors do not usually talk with survivors about sexual problems.” WHAT? WHY NOT? We need to do better. Cancer treatments are responsible for a broad spectrum of side effects.  Hormone deprivation may cause a loss of or decreased libido.  Chemotherapy may cause hair loss, nausea, vomiting, fatigue, and early menopause.  Surgical procedures may leave the patient’s body manipulated, numb, reconstructed, and scarred.  None of these are surprising or uncommon. Patients struggle with their new physical appearance and the emotional impact these changes impart. Patients’ partners may be afraid of hurting their significant other or may also struggle with how to deal with all of these new changes. Young or single patients may worry about the future of finding a partner after cancer and consequent intimacy and fertility issues. There are many options available to help patients improve sexual health and intimacy. But these issues need to be TALKED about. Many patients are reluctant to discuss their concerns with their doctors out of embarrassment. Most patients feel treating their cancer is the priority and they should feel lucky to be alive let alone trying to salvage intimacy and their self-regard. Doctors may mistakenly assume that if the topic was important, patients would start the conversation. This Valentine’s Day, let’s vow to escort the pink elephant out of the room, stop the stigma and tiptoeing around cancer patients’ sexual health and self-image needs, and bring better mental health and psycho-oncology support to our patients. Lord knows cancer patients need more love than ever.

     Psycho-oncology and sexual health support services should not be regarded as a nice-to-have or a luxury for cancer patients currently undergoing or having completed treatment. They need be regarded as a right and better integrated into routine cancer care.  Significant changes need to be made as to how we are treating and supporting cancer patients. In the same way that cancer patients can get their blood drawn on one floor, imaging done on another, psycho-oncology and sexual health support services should be readily available, with doors open and professionals and resources awaiting.  Patients need the opportunity to discuss these concerns in a safe and welcoming environment during their appointments with their oncologist. Cancer centers need to create an open forum for addressing self-image and sexual health issues so as to normalize the problem. Let’s engage the expertise of thought leaders in cancer sexual health and survivorship to speak to patients in educational seminars or videos for patients to access and discuss with their care team.  Perhaps nurses can assist in educating patients on the impact treatments may have on patients’ sexual health, fertility, and self-image. Let’s throw the door open and discuss products and tools patients should be utilizing. This is not taboo. This is a part of human life and only some of the consequences of this horrible thing called cancer. We need do better to ease the burden.

     Let this Valentine’s Day be the icebreaker that encourages patients to talk to their doctors about how cancer is impacting their sexual health and self-image.  Patients, you do not need to be ashamed and suffer in silence. Doctors, let this Valentine’s Day be the end to your reluctance to address the sexual health, intimacy, and self-image needs of your patients. Time to turn that pink elephant in your exam room into a cupid to foster self-love, love in relationships, and hopes for love in the future.  Oh, and dear National Comprehensive Cancer Network, perhaps it’s time to revise the statement: Doctors do not usually talk with survivors about sexual problems. We are all adults here. 

The Metamorphosis of the Cancer Center Waiting Room

     I’ve been losing sleep for the past few nights over this crazy idea. What if there were no waiting rooms at cancer centers? It’s time for a metamorphosis.  Great strives are being made to improve patient care and patient satisfaction scores. Patient-centered care is all the rage. Surveys show that patient waiting rooms are influencers of patient satisfaction. The patient waiting room is a stagnant concept that hasn’t evolved much since its inception eons ago. Reported improvements to waiting rooms primarily address aesthetics, with better seating arrangements, good lighting, use of comfortable furniture, providing complementary Wi-Fi, increasing the number of available power sources, and decorating with soothing visuals of nature. Oh, and a fish tank and coffee maker.

     While aesthetics are important, we need to reexamine the functionality of waiting rooms.  What is their sole purpose? Waiting rooms serve as a placeholder in preparation for a scheduled appointment or procedure. Unexpected emergencies, surgeries, and urgent phone calls from other doctors, hospitals, pharmacies, and ailing patients are responsible for delays in a doctor’s schedule. Preventable reasons for delays include poor office workflow, lack of time management, and chronic overscheduling of patient appointments.  Patients cause delays by being tardy or by bringing up concerning medical issues at the end of their appointment (“oh by the way doc, I had severe chest pains all morning and shortness of breathe).  Whatever the reason, thousands of cancer patients across America are spending hours in waiting rooms daily. Sitting, worrying, and trying to figure out the damn coffee maker only to find there is no milk or sugar.

     Patients detest waiting and feel that their doctors do not value their time.  Waiting, especially at a cancer center, adds additional anxiety to an already stressful situation. What if we could change patients’ perceptions of wait times? Waiting rooms at cancer centers are an untapped resource for improving patient-centered care.  What if waiting rooms were transformed into patient engagement spaces? What if when patients checked in for their appointment they used an app on their smartphone to keep them updated with their approximate wait time? While we are talking crazy, let’s stop calling it “wait time” and refer to it as patient engagement time. What if patients were given a selection of curated activities to partake in until their appointment? Why would we do that you ask? We are doing a very poor job in addressing the mental health needs of cancer patients.

     The American Cancer Society (ACS), National Cancer Institute (NCI), and the National Comprehensive Cancer Network (NCCN) acknowledge that cancer impacts a patient’s mental and emotional health. Fear, anxiety, and distress may cause increasing psychological and physical effects, leading to alienation, depression, decreased quality of life, and poorer outcomes. Patients are encouraged to pursue support groups and counseling.  Unfortunately, many have limited access or availability of resources at their cancer center or within their community.  Many patients are unable to take additional time off from work or from home life responsibilities. Most patients say they simply do not have time for cancer, let alone setting time aside for counseling and support to deal cancer’s fallout. We can’t keep focusing solely on the clinical outcomes of cancer and not the patient as a whole. Most cancer centers have the specialists they need to manage their patients’ cancers onsite. Patients can see their respective doctors, have their blood work drawn in the office lab, get imaging on the next floor, and receive treatment all in roughly the same place. I guarantee most of these cancer patients would benefit from mental health support services. So, why are mental health support services off somewhere in a silo on their own, if anywhere at all? Mental health in cancer patients needs to be made a priority.

     How can we improve patient access to and uptake of mental health supportive services? What if while patients were waiting for their appointment they could attend an ongoing support group meeting, live or via a teleconference, in one of the newly defined patient engagement spaces? What if patients could participate in a group guided meditation or tai chi? What if there was a patient engagement space dedicated to art therapy, where patients could create alongside other patients? What if patients could experience the unconditional love of a therapy dog? Exercise is highly recommended in cancer patients for a number of reasons. What if there was a walking path around the perimeter of the patient engagement rooms? What if each month the patient with the highest number of steps got a credit on their account for $100? Complete insanity, right? What if a patient had enough time to participate in all of these options prior to their scheduled appointment?  Sounds like a happier, better supported, and more satisfied patient to me (#PatientCenteredCare). I’ve personally spent many hours in the waiting rooms of a prestigious cancer center as experts worked through verifying my cancer diagnosis over the course of 4 months. These were the longest 4 months of my life, though in the end, I was ruled a misdiagnosis and cancer-free. Looking back, I’d much rather have had any of these patient engagement options than having had sat in that good ol’ fashioned waiting room alone in my thoughts, contemplating making deals with the devil.

     There are 69 NCI-designated cancer centers in the United States.  Centers of excellence such as Memorial Sloan-Kettering Cancer Center, University of Michigan Comprehensive Cancer Center, and Dana-Farber/Harvard Cancer Center currently offer a variety of exceptional psycho-oncology and integrative services to support their cancer patients’ emotional and mental health needs. While the availability of psycho-oncology and integrative services at certain cancer centers is cutting-edge and commendable, it’s not enough and not reaching enough patients. We need to improve access and expand these offerings to all of the approximately 1500 cancer centers nationwide, not just the NCI-designated centers of excellence.  Mental health support should not be a luxury or nice to have but a basic human right. We need to not only expand availabilities across all cancer centers but also make it easier for patients to access and proactively participate. We need to bring mental health support to the patient. What better way than providing an opportunity for engagement while the patient is on-site at the cancer center waiting for an appointment?

     I know what you are thinking (Is she off her rocker?). Redesigning waiting rooms in cancer centers and creating patient engagement spaces? Replacing magazine subscriptions with art therapy? Trading fish tanks for therapy dogs? Removing furniture and encouraging guided meditation and tai chi? Trading the TV for digital platforms and teleconferencing seminars to improve patient education? Replacing the concept of waiting for an appointment and promoting walking? Sounds like madness. But hey, I’m not the one that decided to stick every cancer patient in America in an empty room with some magazines, a coffee maker, and a fish tank to fill out papers for medical records they’ll probably never be able to get access to when they need them anyway (but that one is for another day). These outrageous ideas are by no means a solution to addressing all mental health unmet needs in cancer patients. But it’s a start and it’s definitely time for a metamorphosis.