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?

Dear Cancer Patient: Don’t Get Lost! (Part 2)

     Last week, I paralleled the experience of a cancer patient navigating the healthcare system with that of the many passageways and blind alleys of a labyrinth. This week I’ll continue the discussion with the next 5 points in the journey where cancer patients get lost.

6.     Procedures: The doctor orders a diagnostic test or procedure such as a biopsy. Many cancer patients are confused and don’t understand why they need to get the test and never follow through. Some patients go for the test but never follow-up on the results with their doctor, assuming that the doctor will track them down. Many patients are confused about how to prepare for particular tests. Do they need to fast? Can they take their prescription medications? Do they need anesthesia? Do they need to go to the doctor’s office, the hospital, or some special facility for the test? Clearly more can be done to make this a simpler process. Providing patients with written instructions that are enhanced with illustrations or rationally designed pictographs may improve patient comprehension and compliance.

7.     Hospital: The average cancer patient may see dozens of doctors, residents, nurses, technicians, fellows, and staff (such as social workers and discharge planners) during a hospital stay for a surgical procedure. Each professional is a source of care and/or information. Sometimes patients may get conflicting information about their prognosis and next steps from different providers and people. Things get even more confusing upon discharge. Most cancer patients do not understand what their next steps are upon leaving the hospital. Who are they supposed to make a follow up appointment with and for what? When does that need to be scheduled? Who do they call with questions? What happens if they are in pain or experiencing complications? What prescriptions do I need to take? Who prescribed them and for what? Having clear discharge instructions is of essence for cancer patients leaving the hospital to ensure patient compliance as well as to improve overall patient satisfaction. Patients, do NOT leave the hospital until you are crystal clear about your next steps.

8.     Insurance companies:  In general, very few people understand the fundamentals of their insurance plan. Yet, people are shelling out thousands of dollars annually for a plan they know little to nothing about. Patients don’t understand what their plan does and does NOT cover.  When faced with a cancer diagnosis, many patients are shocked when the harsh reality sets in that having coverage does not guarantee being full covered. Dealing with insurance companies is not for the easily deterred. Insurance companies are well known for repeatedly denying claims, delaying decisions, processing errors, non-transparency, and confusing their policyholders with insurance-speak. Have a question? Great. Just call the member services number on the back of your insurance card, muddle through the automated menu, pray you’ve selected the right menu option, stay on hold for what seems to be a small eternity to speak to the next available representative, then brace yourself to be endlessly transferred, placed on hold, and eventually either disconnected or told to call your providers billing office. Back to square 1, only more confused and frustrated.

9.     Bills:  Cancer patients struggle with massive medical expenses and bills. Having health insurance doesn’t necessarily guarantee full coverage and eventually balances owed start piling up. While treatments and medical care are expensive, patients need to scrutinize each and every bill that they receive as medical billing errors run rampant in the industry. It has been reported that as high as 80% of all medical billing is incorrectly processed and contains some type of billing error. Patients, request itemized bills from your doctors and hospitals and get out your magnifying glass. Double check any questionable charges with billing departments prior to paying any balances.

10. Automated phone systems: Automated phone systems reduce the likeliness of callers getting a busy signal or being put on hold for extended periods of time due to the routing of other calls. With private practices and hospitals merging into larger facilities, menus of their respective automated phone systems are becoming longer with more and more options to select from. The number of prompts it takes to leave a message for their oncologist may overwhelm patients calling their cancer center. Some patients simply get confused and select the wrong menu option. I’ve been there. You have my sympathy because now you need to hang up and start all over. Even in cases when patients follow the prompts correctly, they may be connected to a voicemail instead of an actual person. Physicians, have you tried calling your own office and navigating your automated phone system? If you haven’t done so already, make sure you make it a priority.

          Navigating the healthcare system and its many uncertain passageways and blind alleys during a cancer diagnosis may become easily overwhelming and difficult. Hiring a private cancer patient advocate will arm you with the expertise and support you need to circumvent the unknown in your journey. You will be relieved of tedious and frustrating tasks so you may focus on what matters most: your peace of mind, recovery, and overall well-being.

 

Dear Cancer Patient: Don't Get Lost!

          Merriam-Webster defines a labyrinth as a place constructed of or full of intricate passageways and blind alleys.  The image offers an excellent representation of a cancer patient’s journey through the healthcare system. Our healthcare system is complex, fragmented, and filled with intricate passageways and blind alleys. Cancer patients trek through the labyrinth while fighting their disease.  In this first post of a 2 part series, here are 5 of the top 10 intricate passageways and blind alleys where cancer patients get lost in the healthcare labyrinth.

1.     Diagnosis: The majority of cancer patients get lost right after their diagnosis is delivered. Honestly, who wrote the terminology for diagnosing cancer?! The doctor may say, “Your biopsy results were positive.” and the patient sighs with relief, “That’s great news doc! I’ve been hoping for positive results!”.  No, positive results in this case signify confirmation of cancer.  The reality is, as a patient, you want negative biopsy results. The doctor continues, rattling off a number of abbreviated diagnostic tests, “We need to schedule a CT, PET scan, and take a look at BRAF, KRAS, and CEA markers. Make a follow-up appointment with me once you get those done”.  That was basically alphabet soup. Most patients do not have the health literacy needed to understand the medical jargon used during their appointment with their doctor. Many are too embarrassed or scared to interrupt and ask a question or ask for clarification. Doctors, when you see your patient wearing a “deer in headlights” look and NOT asking questions, stop and start again.

2.    Internet:  Patients typically start looking up their symptoms, diagnosis, and treatment options on the internet. While the patient is trying to be proactive, it may be very difficult for them to select medically credible sources of information. The downward spiral begins. The internet is filled is thousands of misleading sites, many with outdated content, incorrect statistics, deceiving information, and advertisements for herbal supplements and therapies that have no proven clinical efficacy nor are approved for use in patients.  In the midst of a cancer diagnosis, people are vulnerable and fall victim to resources that are too good to be true. Personally, I love when celebrities and people who have zero medical training become self-proclaimed experts in various disease states and begin advising what patients should be doing. Patients, please! Suzanne Somers is NOT a medical expert in cancer! A better choice would be to refer to the National Cancer Institute or the American Cancer Society.

3.    Finding A Specialist: Your doctor suspects you have cancer and tells you to see a specialist. He or she may offer a referral to a specialist. Is that person the right fit? What if the referral is not covered by your insurance? What if your doctor doesn’t refer anyone? Patients struggle with finding the right specialist to manage or confirm their diagnosis. Don’t just take your co-workers recommendation or neighbor’s experience as gold standard. Patients, make sure your doctor is at minimum board certified and specializing in the cancer in question. If you wouldn’t hire an unlicensed plumber to do all of the electrical work in your home, don’t schedule an appointment with a non-board certified plastic surgeon to manage a your breast cancer diagnosis.

4.     Medical Records: So you’ve scheduled an appointment with a specialist, such as a medical oncologist, and now you need to bring a copy of your medical records to the consultation.  Individuals have a right under HIPAA to request access to their medical records. The process should be straightforward, right? Nope. Many medical record requests are misplaced and never completed. Patients struggle to get updates on their requests over the phone as more and more health information departments are deferring to automated phone systems with no chance at getting connected directly to a person in the office. In many cases, only portions of requested medical records are released or incorrect information is being released. Some medical record requests are denied and never released. Patients are frustrated trying to get access to records that rightfully belong to them.  The advent of electronic health records will hopefully solve this problem one day. Ladies and gentleman, we are not there yet.

5.     Prescriptions: Many cancer patients undergoing active treatment take additional medications for co-morbid conditions. Some patients self-medicate with over-the-counter (OTC) medications, vitamins, supplements, and herbal remedies. Keeping track of all of the medications, what they are for, the doses, when and how they should be taken may become a daunting and confusing task.  During active treatment, cancer patients may be dealing with difficult side effects and may forget to take a dose or accidentally take too much of a particular drug. The results could be perilous. Patients often times fail to fully disclose all of the medications they take to their doctors which puts them at risk for drug interactions and for diminishing the efficacy of their prescribed regimens. Detailed record keeping of all medications and complete transparency is key for cancer patients’ safety and health.

     If you have experienced these or other places of confusion during your journey through cancer, I would love to hear your thoughts. These are just 5 examples of situations where hiring a private patient advocate would resolve any confusion one may be experiencing.  Stay tuned for part 2 of this series next week.