This is Part 5 of a six-part series on Healthcare in the Age of Personalization. Part 4 is here.
We have new capabilities for precision medicine, but that does not automatically mean we’re ready to deliver treatment and prevention for our age of personalization.
In the opening article of this series, I introduced the age of personalization, how it’s connected to inclusion, why it is significant for healthcare, and why healthcare in particular can help point the way for all industries to lead in the age of personalization. In the articles that followed, I discussed the real metrics of inclusion, how business models must evolve, and how personalization intersects with population health.
This time I will explore how personalization affects or informs how we treat and prevent disease. I have written about this topic in the past, in a series on individuality in healthcare, and in this article about a co-design approach to cancer care.
Healthcare, like any industry, faces a quandary of simultaneously needing both standardization and personalization. There are standards of care for a reason: they ensure that people get treatments shown to be safe and effective. Also, without a certain level of standardization, costs would be even more out of control and organizations wouldn’t be very efficient.
But personalization is increasingly possible, especially related to prevention and treatment. Innovations like genome sequencing allow doctors to know your personal health on a level of detail like never before, while technologies like activity monitors enable you to track your own health, fitness and nutrition metrics. These advancements are exciting but not universally available, and they can only take us so far within a system that still isn’t quite ready to handle personalization at scale.
If I track my own metrics and get my DNA sequenced, but end up with a health plan and provider network that aren’t set up to take full advantage – I am still missing out on the level of personalization I expect. The system has to be designed for it.
That’s why I’m so interested in speaking with CEOs and other leaders of health systems. They see the big picture, they know the opportunities and the limitations, and they understand the system as a whole.
Many of the CEOs I interviewed for this series are leaders of cancer centers. They talked about how personalization in cancer care has expanded to include comprehending the individuality of the cancer itself, along with a deeper understanding of the individual host – the person they are treating.
Robert Stone, president and CEO of City of Hope, emphasized how personalization has shifted along with clinical advances. “City of Hope is about providing hope to cancer patients and their families by bringing tomorrow’s discoveries to the people who need them today. We were founded over one hundred years ago by visionaries who believed that medicine and science would continue to evolve, but that caring for an individual – as opposed to simply treating a disease – should be a core tenant for all healthcare providers. This patient-centered approach is the essence of personalized medicine. And now that the science and the practice of medicine are finally catching up with our wholistic approach, it allows us to accelerate best treatments while tending to the unique needs of the individual.”
Stone also said that personalized care at City of Hope takes many forms. “Patient-specific clinical, multiomic and patient generated data is crucial to a personalized approach to medicine. Translational Genomics Research Institute (T-Gen), a medical research institute focused on unraveling the genetic components of cancer and complex diseases, joined the City of Hope family several years ago. This was a crucial last step in creating an oncology continuous learning platform that allows us to derive patient-specific insights and inform evidence-based decision making. As the industry shifts to a value-based care approach, we really cannot achieve true value without meeting the patients’ needs, and T-Gen allows us to get their faster.”
The personalization is not just about how to treat, but also where and who.
According to Stone, “healthcare providers unfortunately too often view the environment through the lens of competition. Cancer is the competition, not the other providers, and a truly personalized approach means, being inclusive by sharing expertise and best practices with others. This is particularly the case with community-based physicians and practices who carry the yeoman’s burden of treating approximately 80% of cancer cases across the nation. One recent example is our decision to launch a transformative supportive care project to train oncologists, nurses and other health care professionals to deliver City of Hope’s signature compassionate, holistic cancer care. This supportive care project will educate more than 1,500 health professionals around the county to treat the psychological, social and spiritual needs of patients and their loved ones in tandem with patients’ clinical treatment. This builds on our decade-long supportive care approach that pioneered SupportScreen technology, which is a touch-screen application that asks patients a wide range of questions to address physical and psychological concerns common to their diagnosis.”
I also spoke with Nancy Davidson, MD, executive director and president of Seattle Cancer Care Alliance.
“What you’re saying [about personalization] is music to the ears of an oncologist, because we really do believe that we’re in the age of what we would call precision cancer medicine,” said Dr. Davidson. “For a long time that meant that we were looking at the cancer: what do we know about that tissue, the genetic changes, the molecular changes that led to that cancer might define how it’s going to respond to treatment.”
“But in recent years,” she continued, “we’ve come to realize that while the cancer is extremely important, the cancer resides in the host, in the patient. It’s equally important to understand all the individual features of the host. Not only the biological qualities of that person – their genetic makeup, their heredity – but also all the things that are wrapped around [each person]. The family with whom they live, their environment, their lifestyle. At this time of precision cancer medicine, we need to be focusing on the features of the cancer and the features of the patient or the host, to understand the best path forward for that patient.”
Personalized prevention – why do people age at different rates?
Morgan Levine, Ph.D., is assistant professor of pathology at Yale School of Medicine. She’s interested in personalized medicine and personalized aging, but her take on it is slightly different. While most personalization is focused on treatment, she is focused on personalized prevention. She researches aging and is curious about why people age at different rates.
“We know aging is the number one risk factor for most of the major diseases – heart disease, Alzheimer’s disease, diabetes and cancer,” said Dr. Levine. “There is a general consensus in the aging community that if you could actually target aging itself, that it would have the biggest impact on people’s health and wellbeing. That’s why I have focused on aging research, trying to figure out why certain people seem to be aging faster and how people are aging differently.”
This is a fascinating example of taking the most universal of experiences – aging – and exploring personalization at its core. It could be easy for organizations (whether in healthcare or any other industry) to generalize whenever possible in order to streamline how they approach any given population of employees or customers. But Dr. Levine’s perspective on something so universal is a good reminder that there’s room and opportunity for personalization even in something we accept as inevitable for every single person. A strategic leader will design organizational processes to help understand and implement changes in the organization around how their populations’ health is shaped by family, community and lifestyles.
Dr. Levine has an interesting approach: “I’m starting to think that we shouldn’t have just one biological age,” she said. “You have all these different organ systems, and organs and tissues, and maybe you have multiple biological ages – and it’s how that mosaic makes you the individual you are in terms of your aging trajectory.”
She explained how it could work.
“We use different statistical approaches that model the whole system and understand how just one individual’s system can make them susceptible to various outcomes compared to another individual,” said Dr. Levine. “From there, [we could] understand why Individual A is aging faster in some systems than Individual B. It might be genetic, or it might be lifestyle, diet, exercise.”
She wants to look at the whole individual, their social circle and their lifestyle, and use that information to determine what they should be doing in terms of health behaviors and medical care. They could gain insight into what an individual can do now, before developing that first chronic disease, to decrease the chance they develop a disease 10 or 20 years early and have a shorter life expectancy.
Dr. Levine is also interested in the outliers and what leads to resilience.
“The other thing I’m really interested in is not just mean – this group seems worse or better than another group – but also variance within groups,” she said. “That’s what I think of as resilience. Why are there these robust people, and what is it about them that enables them to maintain health? And can we target that to help everyone as a whole?”
Her work also reflects what the previous article mentioned about population health – the toll that various stressors can take on health. But, again, it comes down to individuality.
“I’ve also done a lot of work looking at socioeconomic status and financial strain, and also discrimination and stressors and how that translates into these different measures,” said Dr. Levine. “Again, we find exactly what we would expect – individuals who are facing these chronic stressors and hardships throughout their life are definitely appearing to be aging much faster. From there the question is: how do you target the populations? What do they need to reduce that disparity?”
This is where personalization can help inform population health.
“That’s why I’m really focused on this resilience idea,” said Dr. Levine. “Why is it that person A who seems to have the exact same profile, at least from a socio-behavioral standpoint, is not doing as badly as person B? What is it about them that makes them able to withstand this?”
Getting to know patients as individuals.
Patient and family advisory councils are a popular way for healthcare providers to learn about how people feel about the care they receive.
Laurie H. Glimcher, MD, President and CEO of Dana-Farber Cancer Institute in Boston, explained why they are so useful.
“We established Patient and Family Advisory Councils (PFAC), which include current and former patients, caregivers, parents, bereaved family members, and Dana-Farber faculty and staff,” she said. “PFAC members serve as the voice of the patient and family, and bring their perspective and experience to policies, programs, projects and services across the Institute, including by helping to shape our organizational efforts around inclusion and diversity. They are highly engaged in our operations and processes, including using their experiences and perspectives to shape the design and opening of our largest outpatient facility the Dana-Farber Yawkey Center for Cancer Care, and in ongoing projects and satellite facilities.”
Tom Jackiewicz, CEO of Keck Medicine of USC, discussed several different ways they get to know patients and put that knowledge to use, saying that providing appropriate and personalized care to their diverse patient population inherently brings continual opportunities for culture changes within their organization.
“We identified an opportunity to provide stronger value-based care for our senior surgical patients,” said Jackiewicz. “About 30% of our patients over 65 suffer from various forms of neurocognitive disorders and are at a higher risk for post-operative issues such as delirium that can ultimately result in increased length-of-stay, readmissions, costs and morbidity. Our Brain Health Initiative involves members from departments of Geriatrics, Internal Medicine, OT, Pharmacy, Nursing, Anesthesiology, Surgery and Center for Health System Innovation. Pre-op patients over age 65 are assessed for neurocognitive concerns and their inpatient care program is tailored accordingly – for example, rooms with more natural light, less interruptions such as lab work at night. Family members also receive education to make the transition to home safer and easier.”
Jackiewicz said education plays a large role in value-based care for total joint replacement patients as well, many of whom are seniors.
“All joint replacement patients attend a class led by a Keck nurse navigator that focuses on pre-op preparations, as well as expectations during inpatient stay and after discharge,” he said. “Nurse navigators then follow the individual patient throughout the continuum of care.”
This ties into another question I ask leaders, when assessing their organization’s readiness for inclusion: Do you have processes in place to get to know patients as individuals, and to make sure that knowledge is shared across the continuum of care? My intent is to go deeper than the usual health-related questions. Beyond just basic questions, do you have strategies for engaging with patients in a way that invites them to tell us their whole story – beyond how they’re feeling that day?
Jackiewicz described a few different programs in place to create structures for getting to know patients.
“Our No Passing Zone program came out of a Patient and Family Advisory Council and was designed by patients,” he said. “Anytime a patient light is on, staff members must stop by the room. There are algorithms around what tasks can be handled based on clinical or non-clinical position. For example, a request to use the bathroom may require a staff member to inform the nursing station, while a request for an out-of-reach item such as a magazine can be handled by anyone.”
Keck Medicine of USC also has adopted some nursing best practices to facilitate personalization.
“Keck Hospital nurses do a great job getting to know their patients and have several tools at their fingertips, depending on length of stay – from a simple form to share non-medical questions about family, pets or hobbies – to an in-depth living history interview of the patient and family members that is compiled in a story that resembles a newspaper article,” said Jackiewicz. “The story and photos are laminated and posted in patient rooms to help doctors, nurses, lab technicians and other providers understand more about each patient and provide an avenue to develop personal connections about children, grandchildren, pets or favorite travels.”
He said the oncology team led the way in developing this tool, and that the tool is typically reserved for Cystic Fibrosis, transplant, heart surgery or cancer patients staying more than a week.
“Another way Keck nurses develop that personal connection with patients is through a two-minute sit, a procedure where bedside nurses pull up a chair to spend two minutes each day with a patient talking at eye-level about non-medical issues such as family or pastimes,” said Jackiewicz. “Nurse managers created videos of this exercise with each other to facilitate training throughout the nursing staff.”
After-care – what happens in the community after treatment?
I spoke with two leaders from the University of Pennsylvania: Jaya Aysola, MD, MPH, is assistant professor of medicine and pediatrics at the Perelman School of Medicine and described herself as working in health equity; and Eve Higginbotham, SM, MD, is vice dean for inclusion and diversity of the Perelman School of Medicine.
They work together to take the concepts of inclusion and equity and translate them into action items that can be operationalized within the health system – focusing on culture to enhance patient care delivery, scientific innovation and retention efforts.
They conducted a qualitative narrative analysis to better understand what can be done to improve inclusion within healthcare organizations. I’ll share more about their study and results in the next article, where I’ll discuss non-clinical aspects of personalization.
But for now, here’s an example Dr. Higginbotham shared that ties in with the topic of clinical implications and patient experience.
“The business case of diversity is always something that one needs to address, and we’re tying that into a specific measure – financial gains based on 30-day all-cause readmission rate,” said Dr. Higginbotham. “One of the [Centers for Medicate & Medicaid] rubrics is to reward systems that have lowered their readmission rate. To do that, you have to understand the components that go into the readmission rates. One of those is the disparate delivery of patient care across communities. So that’s where the work that we’re doing on a health equity side is so important. If we can identify that patients from a particular neighborhood aren’t following up on their discharge instructions, we [engage] another one of our initiatives: the community health worker.”
Dr. Higginbotham said it’s about being mindful of the need for something like the community health worker, having the data so that you can assess the impact of that need, and then having the strategies to respond to that need: “That’s where we do have all those things aligned here at Penn Medicine. Of course, we can always do more and that’s where the opportunity is.”
Her example relates to another question I ask when assessing organizations for inclusion: Can you think of an example of when you learned something about how a particular population accesses care, and then applied that lesson to the way you deliver care?
Dr. Higginbotham said they are also in the process of learning more about wait times in Emergency Rooms.
“We’re finding that diverse populations have different wait times, they tend to wait longer than others,” said Dr. Higginbotham. “So as part of that project there is the opportunity for patients to tell us their perception of how long they waited and how they felt about it, and what their recommendations are. We’re just at the [early] stages where we’re understanding what questions to ask and what those questions will actually present as data that we can learn from and develop a strategy.”
I appreciated the willingness of Dr. Higginbotham and Dr. Aysola – and of all the people I interviewed for this series – to share with me initiatives that are still in progress. It’s so important for leaders in healthcare to be open because we all need to learn from each other. We’re all still trying to figure this out.
I also appreciated that Dr. Higginbotham and Dr. Aysola brought the discussion beyond today to the need to diversify the medical knowledge of tomorrow.
“The thing that resonates with me in terms of what you said [about personalization],” said Dr. Aysola, “the way our healthcare systems have been designed and the way our medical knowledge has been generated to date has been primarily from a single cultural perspective. We’re all acculturated in that norm. It’s not merely diversifying the front lines, you must diversify your leadership and also those that generate the medical knowledge of tomorrow – to get to a point where we’re designing systems with a diverse perspective, and we’re innovating and generating the medical knowledge of tomorrow with a diverse perspective.”
Expanding participation in clinical trials.
It’s hard to diversify the medical knowledge of tomorrow if diverse populations are not represented in clinical trials.
According to this article by Victoria Forster, a postdoctoral research scientist focusing on childhood cancers, most cancer clinical trials don’t meet their enrollment targets and the reasons are varied – structural barriers often get in the way. Dr. Forster cites a new study published in the March 2019 issue of the Journal of the National Cancer Institute. Barriers range from patient access – no clinical trial nearby, and no financial means to travel to participate in trials elsewhere – to varying degrees of support offered to participating institutions: trials sponsored by pharmaceutical companies get far more support than those sponsored by the government.
Once again, I turn to Nancy Davidson, MD, executive director and president of Seattle Cancer Care Alliance. She is a physician scientist, medical oncologist by training and trade, and her personal interest is in breast cancer.
“As somebody who’s passionate about clinical trials, I tell every patient that everything I know about how to treat you today is because of the clinical trials that doctors and patients before us participated in,” said Dr. Davidson. “I want the trials that we’re doing today to be the new therapy for tomorrow, and we can work together to be a part of that. So that’s something that I feel passionately about for everybody.”
She stressed that participation in trials is low for all populations.
“When you start to talk about our ethnic minority populations, I think you’re right that sometimes it’s even lower and that probably reflects several things,” she said. “One is failure on our part as doctors and researchers to make sure that we’re making these opportunities available widely to everybody. We certainly have the opportunity to partner with our advocate colleagues to make sure there’s awareness across all populations about the importance of doing [trials] and actually about how you as an individual may get even better care. You may be getting the care of the future by participating in these trials.”
She acknowledged the challenge of earning trust.
“I think that we’ve come to realize that we have to be culturally appropriate and [employ] special efforts for some minority populations who might be distrustful of the medical system and worry that they’re being asked to serve as a guinea pig,” said Dr. Davidson. “That’s something that we’re all working very hard on because we’re only going to make headway in the diseases that we call cancer if we’re able to have our clinical advances apply across the board.”
That ties into the importance of trust. We can’t force the issue of trust. We can only build it over time. That requires a systemic approach – with training, methods and processes in place that make connection and trust a proactive, measurable pursuit.
Understanding people’s choices.
It’s only once we have those trust-building systems in place that we can actually start understanding the factors that influence the health and wellness choices made by individuals.
I spoke with Johnese Spisso, president of UCLA Health and CEO of UCLA Hospital System, about balancing personalization and standardization. As she described it, there’s a need to balance “individualized, personalized medicine to make sure we’re getting the right patient the right test or procedure at the right time. Then, also, the need to reduce variability where appropriate according to evidence-based guidelines to achieve the best outcomes for patients, and to demonstrate value-added care that is affordable as well. As health system leaders, we have to be exploring both.”
She said cultural diversity is at the core of everything they do, starting internally with the workforce, and extending to the community to include “not only in our patient care but also our research, our education, and our scholarly efforts in community engagement in reaching vulnerable populations.”
To provide an example, she shared what the organization is doing through an internal LGBTQ committee made up of people who are experts in understanding the needs of the patient population.
“Our goal has been to continue to advance our policies and procedures, educate staff and involve patients and families so that we can be a leader in serving the LGBTQ population,” said Spisso.
She mentioned having patient and family advisory councils for all of the system’s hospitals and clinics. Patients and family members offer input on things like service, diversity, equity, inclusion, “and what they feel when they come into our institution,” she said. “We get really good feedback. Sometimes we think we know the best way to design these processes that represent what patients and families want, but by listening to the patients, we get a lot better information and intel on what we can do to make a difference.”
Based on the feedback from the LGBTQ committee and focus groups, UCLA Health has changed the way they designate information about next of kin in medical records, they updated their website so people can find healthcare professionals who have experience supporting patients who are LGBTQ and the needs of that patient population, and the organization has sought out opportunities to sponsor and participate in job fairs in the LGBTQ community.
She said they look for ways to design care processes that take into account patient needs.
“It’s always a work in progress, but I’ve been pleased with the willingness of our staff to listen to patients, and then to see their leadership in taking these initiatives forward and communicating with us things that we need to do better.”
I also posed some questions to Anthem CEO Ms. Gail Boudreaux about how the organization is responding to the need for inclusion in healthcare and sharing inclusion insights throughout the organization.
“It is important that we have employees and teams operating in the community, and even more important that we have the right mechanisms and processes to incorporate their learnings and insights into the broader organization,” she said.
One way they do this is through the Anthem Whole Health Connection tool.
It “allows different teams inside the organization to work together to better understand the unique and personalized needs of our population,” said Boudreaux. “Leveraging this tool allows us to bring together the medical, dental, vision, and pharmacy interactions of our patients to organize their care and ensure that they receive targeted solutions for their specific needs.”
Among several specific programs, she mentioned progress related to the needs of seniors.
“We have an innovative Togetherness program for seniors first launched within our CareMore model to combat loneliness,” she said. “Of the approximately 780 members who’ve engaged in the program to date, we find improved health outcomes as result of the more intentional acts of socialization. Our most recent analysis shows that as engagement rates with this specific audience went up more than 20% over the previous 12-month period, their need for medical treatment declined by 20% during that same time.”
From the insurance perspective, Dr. Shaden Marzouk, managing director of health for AXA, told me about some initiatives designed to help get health innovations to more people.
“AXA has embraced innovation and technology as one way to more fully engage with customers across the continuum of care,” said Dr. Marzouk. “This includes championing telemedicine around the world as well as investing in health-tech start-ups that have an impact on the lives of patients.”
This brings me back to my opening statement about the importance of making new innovations more accessible to all people.
“For example,” Dr. Marzouk continued, “AXA facilitates patient journeys by supporting Moroccan start-up DabaDoc, tackles innovations in alcohol rehab through an investment in Annum Health in the US, and enables UK elders live more safely in their own homes by incubating Birdie. DabaDoc helps thousands of patients a month connect with doctors. Annum Health provides evidence-based treatment in patients’ homes for alcohol use. Birdie utilizes technology to bring together the elderly, their families and caregivers.”
As you can see, there’s incredible work being done to advance the way we can prevent and treat disease at the population level and at the individual level.
But how can we really put these advancements to work if we don’t have the systems for personalization? Everything comes back to the need for getting to know people as individuals, and for structuring organizations in a way that is welcoming to every individual at every level.
The final article in the series will address the workplace and the role of human resources becomes reimagined given the urgent need to secure a more diverse talent pipeline and creating an organizational culture of inclusion that honors our new age of personalization.