Tales from the Healthcare Front Linesby Susan Nemetz, January 2019
Each month, you have given our team permission to communicate our views on the biopharma industry, its leadership, and overall commercialization of innovative medicines. We share this perspective with knowledge of a healthcare system based on what we read, hear, and know from personal experience.
In our industry, we often talk about innovation, technology, data, and patient advocacy as separate topics. But when they are in front of you, and not purposefully integrated with the care of a loved one, they can produce despair and poor outcomes on multiple measures.
Today’s e-conversation, I warn, delves into a more personal story than usual. But perspective is still the operative word. My intent is to share an evolution of my thinking regarding the “delivery of healthcare” based on two, very real-life experiences.
A Family Health Crisis
I just returned to the office after spending a month with my siblings supporting our parents in their full-on interaction with the healthcare system – one parent with a rare disease, one with a critical care hospitalization. I return humbled, frustrated, determined, and with a vastly broadened perspective regarding the “delivery” of care and its many disintegrated parts.
Prior to this experience, these broad statements are typical of what I might have said in both professional and casual conversation:
- Electronic medical record (EMR) systems will improve patient care by aligning the disparate team on the facts
- Team-based care will ensure patients get the best input from diverse points of view
- Well informed patients (and their care providers) will be able to advocate for the treatments needed
- Diagnosis of a rare disease is a challenge, but once known, the disease can be treated with available therapies
- Patient-centered strategies must be part of the core of a pharmaceutical company strategy
- Although many drugs are expensive, there are options for most patients to reduce/manage the costs
All true. But absent perspective – that thing one attains with an experience that forces one to see what was not visible before.
From Bad to Worse
My Dad, an otherwise incredibly spritely former engineer, spent a year bouncing around specialists before finally being diagnosed with a rare cardiac disease. Even with vocal family members with their own medical expertise, he struggled to get attention for his worsening condition. What was obvious to us somehow evaded multiple specialists who never seemed to see the whole patient. And, because he lives in a city without an established academic medical center and only large community hospitals, retaining the patient and doing another test (or three) seemed more the norm, rather than taking an integrated view. We struggled to answer the question, “Who’s in charge?”
Once the diagnosis was finally made, his industry-savvy offspring knew that getting him into a trial or on expanded access for an “as of yet unapproved drug” could provide some hope. This concept is one that is so easy to discuss in a biotech conference room, yet so difficult to explain to a nurse practitioner that has to submit the paperwork to the pharma company, the office that needs to apply for IRB and FDA approval to become a site, or for the MD that now has to decide which patients, other than the one that raised the idea in the first place, should be in the queue. Oh, and BTW, the preferred method of communication is through the portal which often feels like communication into nowhere. Perspective!
Separate from this, my Mom, a less spritely, former nurse and mother of six kids (we still call our middle-aged selves “kids”) went into the hospital with pneumonia. The course of her care would fill many months of this newsletter, so I will keep it to this: Over a period of two weeks, my Mom was admitted to one hospital, transferred to another, cathed, intubated, extubated, held for four days, given multiple innovative pharmaceuticals, discharged at 8:00 pm to a rehab hospital in a wheelchair van, returned within 20 minutes when the oxygen tank ran out, transported in a second attempt to the rehab hospital in an ambulance, readmitted in 36 hours back to the hospital – this time via EMS with 3 PEs (pulmonary embolism) and a secondary hospital-acquired pneumonia.
Throughout every step, she had family who talked to the doctors, told her story to the nurses (different staff almost every day), rubbed her feet, gave her water when her mouth was dry, and assured her that Dad was ok. We didn’t care about any of the commercialization strategies the companies that made the drugs, devices, or equipment developed. We just wanted the healthcare providers to have time to work together, review her case, pause, and make the best integrated decision for the patient (my Mom).
We wanted the healthcare delivery part of the system to work. And while the clinicians were mostly kind and tried to be attentive (especially when family was in the room), man, they seemed overwhelmed, busy, and fragmented. The drugs probably worked well enough when she got them, but it just seemed chaotic, with all the facts and insights buried in “that computer,” as my Mom called it.
Through this we learned the importance of having a “patient advocate” and, as family, we tried to play this role as best we could. Hospitals have case managers that manage (read: accelerate) discharge but what about admissions, transition from level of care, and answering the ever-present question, “Who’s in charge?”
It was hard not to feel despair about the gap in implementation, particularly given my firsthand knowledge of the novel healthcare advances being made every day in the life sciences world we all inhabit.
Thoughts On Moving Forward
My takeaways now, somehow both pessimistic and hopeful, are these:
- The treatments our companies develop have no value if the healthcare providers have no mind space to focus on all aspects of the patient’s history to know what their problems are, and which treatments will be most effective.
- Superb imaging techniques have no value if no one has time to read the results and adjust the treatment as the patient gets sicker.
- Electronic medical records have no value if the healthcare providers don’t have time to absorb the volumes of information or, worse, even get a snapshot before their shift begins.
- Superb medical and marketing strategies have no value if drugs are stopped and started by each specialty, seemingly without consultation with the other specialties or full appreciation of the implications on other aspects of the patient story.
What was broken was the system. What IS broken is the system. Even the amazing care providers we connected with so deeply, acknowledged and shared in our frustration.
We must work together in our industry, in our communities, and with our votes, to fix this system. How can we encourage the prioritization of quality, integrated care delivery with a focus on the patient, and support of the healthcare providers, that truly keeps the patient’s health and well-being at the center?
We need to ensure our commercialization strategies for a drug or solution are developed in the context of the fragmented care delivery system that many patients experience.
I have so many thoughts that continue to float through my mind daily, including a recognition that my parents are lucky to be educated, have resources, and have a large and committed family to help them navigate the system. But what about those that are less fortunate? I can only imagine.
I am also grateful for the many people along the way that truly did their heroic best to give us the information we needed, advocate for the proper attention to both my parents, and support all of us. Some of those people were within the healthcare system; many others are friends, colleagues, and extended family members. It takes a village.
What are your thoughts about what we CAN do from our place in the industry and in our commercialization plans?
P.S. During the time I was with my Mom, a quality resource person did come by to ask a few patient satisfaction survey questions. Unfortunately, the questions only concerned the custodians and dietary delivery. Who’s in charge?