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.

USCDI Task Force

Truly humbled and beyond thrilled to be invited to serve on the U.S. Core Data for Interoperability (USCDI) Task Force, a subgroup of the Health Information Technology Advisory Committee (HITAC). The USCDI is a standardized set of health data classes and constituent data elements for nationwide, interoperable health information exchange.

The USCDI Task Force is currently charged with reviewing and making recommendations on the Draft USCDI Version 2 content and process. I am committed to ensuring that the patient and carepartner perspective and unmet needs are amplified throughout this rigorous and critical review process.

I look forward to listening, learning from, and collaborating with my esteemed colleagues on the Task Force who have been tirelessly leading the way to a world where health information flows seamlessly and actionably, to a place where data silos no longer exist.

https://www.healthit.gov/hitac/member/grace-cordovano

Like a Sitting Duck

A recent publication in JAMA, Optimizing the Trade-off Between Learning and Doing in a Pandemic left a great void from the patient and carepartner perspective.

I'm disappointed to see that, once again, patients & their carepartners are NOT included in the potential solutions to enrich BOTH learning & doing while in a pandemic.

This is one of the biggest failures of the clinical trial landscape, COVID-19 or not.

  • What if we had a pandemic clinical trial consent process?

  • What if people could be informed of trial options ahead of time and proactively provide consent to clinical trials in anticipation of being diagnosed with COVID19?

  • Why can't I as a patient proactively consent to participate in a clinical trial for COVID19, as a just in case, especially while I'm literally sheltering at home in a COVID19 hotspot like a sitting duck?

We have advance directives for end-of-life care planning. Why not advance consent directives for potential clinical trial participation?

Just like the taboo about death and end-of-life care planning, talking about clinical trials is always too early, until it's too late.

Here's the article: https://ja.ma/3e72XJJ

HIMSS20 Update: Do No Harm

It is after much consideration and many hours of lost sleep that I have made the decision to not attend HIMSS20. There were significant circumstances that needed to be considered. The safety of the patients I work with, the disabled family members I care for, and the safety of my own family and local community take priority over the many landmark professional and networking opportunities offered to me at HIMSS. Here is my official statement of cancellation.

I'm reaching out to let you know that I have made the incredibly difficult decision to not attend HIMSS20.

As an individual patient advocate, I am truly humbled to have the opportunity to represent the patient and carepartner voice in discussions about digital health, internet of things, innovation, the patient experience, patient engagement, and consumerism. I take these opportunities very seriously, recognizing how rare they are, especially in the conference setting, and the responsibility that comes with them.

As you may know, my day to day is spent in cancer centers and hospitals, with often very sick, very immune-compromised patients in active treatment for cancer. I have been carefully following the reports from WHO and CDC as well as local media surrounding the coronavirus. I have to weigh the potential consequences of attending HIMSS and returning home with an unsuspected case of the virus and the impact it could have if I return to my daily patient advocacy work in working with people at their most vulnerable time of their life. Similarly, as the caregiver to 2 disabled adults and a mother with small children, a potential illness, self-quarantine, or mass quarantine of a plane would be an unmanageable burden for my family. 

I have never cancelled an invited speaking engagement or interview. This year's HIMSS20 had 6 invited speaking engagements and 3 recorded interviews on my calendar. It is with a great disappointment that I have decided to not attend. Please know that this has been one of the most difficult professional decisions I have ever had to make. I greatly apologize for any inconvenience this late cancellation may cause in the scheduled programming. I do hope that future events will continue to be supportive of the patient and carepartner voice and thank you for all the opportunity that was given to me at this year's event. I wish you the safest of travels and best of luck with the conference.

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?

Robotics, Technology, and the Patient’s Clipboard

As a little girl, The Jetsons used to be one of my favorite shows to watch. An animated sitcom produced by Hanna-Barbera, The Jetsons featured a quaint family of 4 living in a space-age, futuristic era where daily life was rendered simpler by the glories of robotics, whimsical advancements, and high-tech innovations. I can still close my eyes and picture myself as a 6 year old, daydreaming about what the future would be like. 

Fast forward to August 2017. I’m watching a client struggle to wrestle their insurance card out of their wallet while juggling a clipboard with patient intake papers, her phone, and a water bottle.  Peripheral neuropathy stemming from many cancer treatments has made grasping things difficult and excruciatingly painful.  “But nothing has changed since last week, do you still need another copy of my insurance card?” asks the exasperated patient, still trying to free the pesky card from the tiny pocket in her wallet. “Office policy”, replies the receptionist curtly without looking up, “And fill out the forms because we are updating the records in our system”. There are 3 pages of forms. The patient has been coming here for over 2 years. All of the information is EXACTLY the same. She slowly fills out everything as diligently and neatly as she can, refusing my offer to help do it for her.

As a private patient advocate, I often accompany patients and their care partners to a broad spectrum of appointments, spanning follow-ups with their primary care physicians to specialists such as oncologists, cardiologists, or rheumatologists, to imaging centers for MRI’s, CAT scans, PET scans, and mammograms, to hospitals for pre-admission testing, surgical consultations, or procedures, or to phlebotomy labs for routine blood draws. I’ve observed hundreds, if not thousands, of patient encounters with front desk receptionists. No matter what the setting, there’s a common denominator routine that unites most of these experiences:

(front desk receptionist):  “Please fill out this paperwork (handing a clipboard to the patient) and I’ll need a copy of your insurance card.”

The moments that follow can be filed under “Complete Waste of Time”.

  • Patients can’t get their insurance card(s) out of their wallet.
  • Patients can’t find their insurance card in their wallet because the last time they were asked for it they were so flustered juggling the clipboard they shoved in a random spot.
  • Patients begin filling out the intake forms they’ve filled out many times before.
  • Patients realize they didn’t bring their glasses so they can’t actually read the form that’s also  often poorly photocopied.
  • The pen starts running out of ink a third of the way through.
  • Patients start looking for a new pen.
  • Some patients continue writing, pressing harder on the paper in hopes of reactivating the pen. Many curse, press harder, and rip the form.
  • Patients wait for the receptionist to return their insurance card so they may proceed to fill out the insurance information on the intake form.
  • Patients try to write their insurance information (ID number, group number, address, member phone number, etc.) on the miniscule lines on the form.
  • Patients can’t find the group number on the insurance card. (Insurance companies, take note!)

We are in a fascinating era of robotics, artificial intelligence, virtual/augmented reality, and digital technologies that fulfill people’s wildest imaginations.  The cancer surgical landscape is being transformed by advancements such as the da Vinci System (Intuitive Surgical), a robotically assisted surgical device bringing surgeons enhanced precision, dimension, and control while extending the possibility of minimally invasive surgery to patients https://www.intuitivesurgical.com/products/davinci_surgical_system/.  Robear (Riken), a bear-like nursing robot, can perform care-giving tasks such as lifting patients from their bed, transferring them to a wheelchair, and helping patients stand from a sitting position http://www.riken.jp/en/pr/press/2015/20150223_2/.  Hospital acquired infections may have met their match with Xenex, the germ-zapping robot, which uses high intensity pulsed ultraviolet light from xenon lamps to significantly decrease microbial loads in hospital patient rooms https://xenex.com/video-demos.  And who can resist the cuteness of the PARO seal (AIST), a therapeutic robot that fulfills unmet needs within the animal-assisted therapeutic space http://www.parorobots.com.  This is just a sampling of the wonders out there. There are even wide spread reports anticipating a robotic takeover and fears of automation replacing humans in a variety of sectors. With all of this pure genious rocket science and technology, can someone please explain to me how the hell patients are dealing with clipboards, insurance cards, fax machines, and paper chart folders with 3-hole punched paper records? Dear technology, you’ve missed the mark. You need to go back to the basics and fill in the (MAJOR) gaps before aspiring to have robots take over the world.

Many aspects of healthcare are not the futuristic Jetsons-like encounter I daydreamed of as a little girl. Dear Apple, for the love of all that is holy, please tell me there is an solution in the making that will allow patients to wave their phone Apple Pay-style to confirm basic demographic patient and insurance information so we can simplify the patient in-take process at every healthcare facility touch point. And while you are at it, lets have the capability to pay any co-pays with a second wave of the phone.  I mean enough with this cash, checks, or digging for a credit card nonsense.

Alternatively, at this juncture, it may be easier to perhaps bring in Pepper (SoftBank Robotics), the humanoid robot, into waiting rooms across the nation as an acting patient assistant to fill out the damn paperwork and get the insurance cards out for patients https://www.ald.softbankrobotics.com/en/robots/pepper. I’ll bet you a dollar it may easier than solving the current shortcomings and interoperability issues surrounding electronic health records (EHR) and patient portals.  It may also be more pleasant of an experience than many of the interactions I’ve witnessed with some front desk receptionists. Dear tech companies, looking forward to what you come up with. In the meantime, excuse me while I go find a pen that works for my client.

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.

Wishes For The End

     The only thing that is certain in this life is that we must die. Sounds awful and morbid. But what’s worse is the reality. Too many people die in a way that they would never choose. Too many people die in the hospital or in a medical facility, surrounded by machines, tubes, over-treated, over-medicated, and subjected to endless procedures until their last breath. While an unexpected sudden death obviously cannot be planned for, discussing your wishes, values, and end-of-life care choices is extremely important. The best time to have the conversation with loved ones is when you aren’t in the middle of the throes of a medical emergency. I’ve witnessed it too many times before. Someone is in the hospital, unresponsive or in critical condition. Family members have moments to make decisions that will significantly impact the life of their loved one. Disagreements and conflicts arise amongst family members in an already high stress situation. Emotions run high. How can anyone think clearly and make informed choices at such a difficult time? If your spouse, parent, sibling, or other close family member was hospitalized and you had to make decisions on their behalf regarding their care, would you be able to?  If you and your loved ones do not have an advanced directive, it’s time to start working on one now. You never know when a medical emergency or accident may happen.  The time may come in your 20’s or in your 80’s. Having an advanced directive in place gives you and your loved one peace of mind that all options have been openly discussed. Unfortunately, many people aren’t aware of advanced directives and the importance surrounding them. In 2014, a study in the American Journal of Preventive Medicine estimated that only about a quarter of Americans had completed an advance directive.

     So what exactly is an advanced directive? An advanced directive is not just about “pulling the plug”. An advanced directive is typically comprised of two legal documents. A medical power of attorney names a healthcare representative or healthcare proxy to make decisions about your care in the event that you are unable to speak for yourself, for example in the event of a coma.  The other document, a living will, defines your wishes with respect to the level of care you would want in the event of medical emergency. For example, in the event of a coma, would you want a feeding tube or to be placed on a ventilator?

     My 4-year-old son often takes me on a date to the local diner on Wednesdays. Every time we are there, there’s a group of 4 ladies lunching at the same table in the back right corner. My guess is that they are in their late 80’s. They look fabulous and laugh a lot. We are often seated next to them. I must admit, the candidness of their conversations is both refreshing and shocking. This particular Wednesday, they talked about their deaths and end-of-life care openly and quite casually over their soup and half sandwich specials. I came to learn that they all had advanced directives. They were in agreement that there would be no resuscitations, that quality of life was more important than continuing treatments that had terrible side effects, and that if it was possible, all wanted to spend their last days at home. One woman stated she had finally figured out where to spread her ashes: she’d have a helicopter fly over Neiman Marcus and sprinkle her over the shoe department! Though I almost choked on my pancakes, I was impressed and made a mental note of that one.

     We can’t plan everything. We can’t plan our death. But we can have a conversation.  A conversation about what’s important to us at the end of life. If not at the diner, then at home over lunch or a cup of tea. CaringInfo.org is an excellent resource and great place to start.  The site provides free advanced directives and instructions on a state-by-state basis.  So, do you have an advanced directive yet?