The Lens of the Patient and Carepartner – The Health Care Blog
By GRACE CORDOVANO
Attending HLTH 2021 in-person in Boston solidified that there is no comparison between attending live vs. virtual conferences. While content and presentations can be solid both virtually or in-person, it is the energy of the connections that are made between scheduled presentations and the conversations that are shared throughout that move the needle. Kudos to the organizers of HLTH 2021 for prioritizing the safety of all in-person attendees with COVID-19 vaccination requirements, proof of negative PCR testing within 3 days of arrival, and mask requirements on-site.
After reflecting on all the proceedings, the conversations, and the experiences at HLTH 2021, here are eight reflections on the event from the patient and carepartner perspective.
1) Patients and Carepartners (Not) Included
These words were the taglines of HLTH2021:
Dear Future: We’re coming for you. #HLTH2021
The largest and most important conference for health care innovation
A battle cry for improving health care, but I can’t help but wonder, who’s “we’re”?
The agenda and stages at HLTH2021 were filled with some of the biggest, most respected names in the health care ecosystem. Unfortunately, no patients were speaking from these stages. A search of the agenda and speaker list for “patient” showed entries for “patient experience” or “patient” in the form of an executive title. Many panels and discussions fell short of the real-world experiences of living life with a diagnosis or multiple comorbidities, the difficulties of barriers to healthier living that are caused by social determinants of health (SDoH), and disgraceful realities of the inefficiencies of workflows patients and their families face. There were no patient or carepartner champions sharing the positive impact that a company’s brand has had on their or their loved ones’ lives.
Numerous stakeholders said, “We are all patients or will be one day.” Be wary of this misconception and its associated assumptions. There is a spectrum of patients’ experiences of living their lives with a diagnosis which is made unique through the implications of SDoH, lack of health experience literacy, lack of peer health support, and lack of accessibility supports. One innovator’s (often privileged) experiences should not be assumed to be the collective experiences of all patients across all disease states and life’s circumstances. Instead of assuming, #AskPatients.
My advice to innovators:
- Demonstrate real-world impact with actual patients and carepartner telling their stories.
- Hire patients and carepartners as part of the leadership and decision-making team. Don’t forget about the power of surviving carepartners- the people who navigated and coordinated care for their loved ones who died from their disease. They have a wealth of wisdom from a unique perspective to share.
- Be bold. Invite groups of patients and carepartners to reflect on your brand’s work, analyze real-world value critically, and ask tough questions.
- Sponsor patients and carepartners to join conferences in-person or, at minimum, virtually. Check out #PatientsIncluded for more information on how to get started. Instead of spending precious budgets on conference swag, invest in sponsoring a patient and celebrate it. That is cutting-edge.
- Celebrate patients and carepartners that are working tirelessly to make a difference. A special shout out to Finn Partners for sponsoring the award for Journalistic Excellence in Amplifying Patient Voices that was awarded to Jen Horonjeff, founder of Savvy Cooperative, at the Power Press Awards Gala.
2) Behavior Change (or lack thereof)
There was no shortage of conversations about the holy grail of successful behavioral change. There is unanimous agreement from stakeholders that changing patient behavior is complex. More frequently than not, patient behavior is not the problem. What are patients and their families to do when it’s not their behavior that is the problem, but the ecosystem’s behavior is wreaking havoc? For example:
- A patient’s board-certified physician confirms that a patient needs a gold standard treatment for their cancer diagnosis or imaging to get more clinical information. The insurance company denies the treatment or the imaging prescribed by the board-certified physician, deeming it not medically necessary. Who is responsible for the delays in care that ensue?
- A single mother who is disabled has numerous comorbidities, including high blood pressure. She repeatedly goes to the emergency room because her blood pressure is poorly controlled. She is told to watch her salt intake and often shamed for not “doing it right.” The patient is discharged from the emergency room after spending most of the day in the ER. No one asked if she had healthy options at home or groceries in her refrigerator. No one asked if she needed support from a nutritionist. No one listened and wiped away her tears when she said she didn’t want to die of a stroke like her mother did, and she wants to do better but doesn’t know how. Who is responsible for bridging these gaps in care?
- A patient has been trying to get her medical records to switch to another cardiologist. Her previous cardiologist does not respond to the repeated requests for copies of records to be sent to the new cardiologist even though they were requested six weeks in advance of the new patient appointment. The new cardiologist is visibly frustrated that the patient can’t answer questions about their medication history, tests that have been performed (or not) and proceeds to order extensive bloodwork and various cardiology tests and imaging. The patient insists that they think these tests were all recently done. The new cardiologist says, “You didn’t bring me a copy of anything.” The patient has the tests repeated only to have the insurance company deny reimbursement for some of them because they are medically unnecessary. The patient is now responsible for high out-of-pocket costs that they cannot afford, may be documented as a “poor historian”, and assumed to have poor health literacy. It shouldn’t be this complicated to coordinate care.
Behavior change needs to encompass all people behaving in the health care ecosystem. Efforts for positive changes need to be directed at all stakeholders, not just patients. People who live in glass houses shouldn’t throw stones.
3) In Sickness & in Health
Conferences are an integral part of health care innovation. These experiences are designed to foster an environment for networking, connection, the challenging of the status quo, and the celebration of grit and innovation. Conferences bring learning, laughs, intrigue, brainstorming, the dawn of new collaborations, and healthy competitiveness. Conferences should be recognized as a part of health care. Why do we wait to engage with patients and their families only at the point of care? We routinely hear an emphasis on the need to invest in prevention, building patient trust, and encouraging patient engagement and adoption. Why aren’t patients included in conferences like HLTH2021?
As I walked the convention center halls, I carefully read all the big names on the various rooms that were reserved. Many had playful signage that said “Do Not Enter, Beware of Dog,” “Beware of Flesh-Eating Piranhas.” Imagine if there was signage celebrating: “Patient Think Tanks,” “Patient Innovation Labs,” “Proud to Welcome: Patients and Carepartners Joining Us Today!”, or “Patient & Carepartner Experts for Hire” (to address that talent pool gap everyone is talking about). We must dream bigger.
4) Data Dead Ends
Numerous exhibitors had innovations that could make at least incremental improvements in the lives of some patients and families. When I asked if data collected could be shared in real-time and actionably with the patient or with the patients’ carepartners, there were two camps of reactions:
1) company representatives looked perplexed and said data only went to providers or
2) representatives quickly said it was going to be a future offering.
The future is now.
We cannot continue to only send results to physicians. If data is being collected and used to guide decisions about a patients’ care or coordination of care, patients want and need access to it as do their carepartners. In an environment where we are collectively working towards more robust interoperability, too many in digital health, RPM, and AI/ML clinical decision support are intentionally creating a new avenue of digital innovation data silos. Hard stop.
5) Benefit$ to Who
As a patient, it’s becoming more and more difficult to understand if a company’s main goal is to truly transform people’s lives or if it’s really in the business of simply collecting as much data about the patient for secondary commercial purposes. As a patient, this weighs heavily in light of astronomical health care out-of-pocket costs and growing rates of financial toxicity, continued poor coordination of care, poor outcomes across a number of health conditions and disease states, and lack of attention to preserving autonomy, dignity, and quality of life.
There were no candid discussions about patient digital dignity and digital rights. Patient groups and advocates, such as The Light Collective, are demanding candid discussions and policy changes in the realm of data privacy. It is disappointing to watch leaders in innovation completely avoid addressing these critical issues. If companies were required to report their revenues from aggregated patient data streams, would their products, services, and offerings still be celebrated as transformative, improving outcomes and peoples’ lives and addressing health inequities? Show us the data.
6) Tin Man Seeking Heart
We say we are moving away from “doctor knows best” to patient and consumer empowerment but more and more, things feel like we are moving deeper into “tech and AI know best.” In many cases, our tech innovations are like the Tin Man in the Wizard of Oz seeking a heart: empty and longing for connection. Tech-enabled human touch is critically important. Tech is also not always the solution and cannot stand alone without those who have the heart to carry it forward. Investment in people who can deliver better patient support and customer service is critical.
Here are a few examples of tools and innovations that truly can make a difference in peoples’ lives, the power of which should have been more celebrated at HLTH2021:
- FamboxRx is a fresh grocery delivery service that now accepts Supplemental Nutritional Assistance Program (SNAP) benefits for fresh groceries, dry goods, and medically tailored frozen meals. This is exceptional news for patients with Medicaid and participating Medicare plans who may be living in poverty, with food insecurity, and in food deserts with limited access to healthy food choices. FarmboxRx meals are tailored and supported by a nutritionist and can even be ethnically customized. This is a strong example of innovation and public-private partnership that can drive substantial real-world change, helping support people in meeting their health goals.
- AARP Innovation Labs showcased a smart cooking pan that can help users understand the nutritional value of the meals they are cooking. This is one of the most challenging things people struggle with at home when they prepare meals for themselves and their loved ones: am I really cooking healthy? Empowering individuals with tools such as a smart pan can transform the way that people care for themselves and the ones they love.
- The benefits of animal and pet therapy in a variety of disease states, during in-patient care, chronic illness, and as emotional and mental health supports are widely documented. Having puppies on-site at HLTH 2021 brought immediate joy to all who passed by or jumped into the dog park to play. We need to look deeper past the novelty of puppies on-site and explore the boundaries of real-world implications on patients’ lives. How can the foundations of this exhibit be reimagined to bring more joy, companionship, and unconditional love to those struggling with complex illnesses, living with mental health diagnoses, to the elderly, and those who may be alone and in need of companionship? Pets can play a greater role in health’s future as a solution. Pair this with RPM or patient-reported outcomes. I double-dog dare someone to prove me wrong.
7) Shots! Shots! Shots!
I wish there was a way to get my flu shot while I was on-site at HLTH. We talk about in-person health care delivered in the clinic, virtual care, and at-home care. What about care where we are, like at a health care conference or work? COVID-19 testing was readily available, which was exceptionally well done. Anyone planning a conference in the fall should have mobile vaccination clinics for flu and COVID-19 vaccines available. Bonus points for having digital check-in for patient intake and doing away with paper forms on a clipboard and for getting proof of vaccination to my care team electronically.
8) Getting Stuff Done (GSD)
With so many high-power players and health care innovation celebrities under one roof, I would have loved to see a hackathon or connectathon-type format in lieu of some of the traditional panels. The HL7 FHIR community is one example of connectathons done right. Real-world challenges faced by different stakeholders, especially patient unmet needs, should be crowd-sourced prior to the conference event. Top challenges should be selected for live innovation, with updates on progress, successes, struggles, and solutions provided in real-time. This needs to include representatives from all stakeholders. There is plenty of low-hanging fruit that is ripe for the picking that could easily be solved if people truly collaborated in the sandbox and authentically wanted to incrementally transform health care and meaningfully address SDoH. Only then can we say, Dear Future: We’re coming for you.
Grace Cordovano, PhD, BCPA is a board-certified patient advocate specializing in the oncology space, a patient experience enhancer, and information unblocker.