Matching Patients with the Right Supportive Care Programs at the Right Time: Integrative Oncology Leadership Collaborative Case Study
Introduction
Community Hospital Offers Comprehensive Integrative Oncology Program
Inova Schar Cancer Institute is part of Inova, northern Virginia’s leading nonprofit health care provider. The integrated network has five hospitals (with 1,952 licensed beds), primary and specialty care practices, emergency and urgent care centers, outpatient services, and destination institutes.
“Supportive care makes a difficult experience better for patients and families.”
Executive Director, Life with Cancer and Patient Experience Inova Schar Cancer Institute
Integrative Oncology at the Inova Schar Cancer Institute
Life with Cancer is a supportive care and integrative care program within the Inova Schar Cancer Institute that was established more than 30 years ago. Its purpose is “to enhance the quality of life of those affected by cancer by providing evidence-based education, support, wellness programs, and integrative therapies.” Life with Cancer is embedded in each of Inova’s five hospitals and one standalone center. More than 75 team members work at Life with Cancer.
Comprehensive Programs and Services
Nurse navigators, behavioral health therapists, psychologists/psychiatrists, dieticians, and the fitness program are the pillars of Life with Cancer. Therapists are social workers, licensed professional counselors, psychologists, or psychiatrists. The team also includes:
- a music therapist
- journal therapists
- play therapists
- acupuncturists
- massage therapists
- Reiki masters
Every month, Life with Cancer offers about 200 programs and services, including:
- supportive counseling and consultations on what to expect from cancer and treatment;
- classes on healthy living, integrative therapies, managing symptoms, stress management, and more;
- fitness classes, which include cardio drumming, weights, movement, and Tai Chi;
- special guest speakers and conferences;
- community presentations at businesses, universities, health fairs, and more; and
- support groups to connect with other patients and families.
Classes to help patients manage common side effects, which are usually offered as a series, include:
- cancer related cognitive impairment
- cognitive behavioral therapy for insomnia
- fatigue
- sexual health
Life with Cancer also offers integrative psycho-oncology classes, which focus primarily on managing anxiety and depression through mindfulness or cognitive behavioral therapy.
Virtual, In-Person, and Hybrid Formats
Before the COVID-19 pandemic, all Life with Cancer programs and services were offered in person. Today, the majority of programs are virtual, however, many one-on-one appointments and some group programs are in person. Some fitness programs are offered virtually or in person while others are only available virtually.
“Supportive care is integral to what we do. We can’t take care of people and maximize quality of life without supportive care.”
“We’re trying to find a healthy mix of virtual and in-person programs and services,” says Jennifer Bires, MSW, LCSW, OSW-C, Executive Director of Life with Cancer and Patient Experience at Inova Schar Cancer Institute. “Some patients want in-person connections. Others like the convenience of being online and not having to travel.”
Paying for Supportive Care
Nearly all programs and services are free for patients (Inova patients and cancer patients being treated elsewhere), survivors, and their family members, with the exception of psychiatry, which is considered a “regular” medical service so that would be covered by health insurance or self-pay. Acupuncture and massage are free for up to six visits, depending on the patient. After that, patients pay a reduced rate.
Life with Cancer is funded by philanthropy (50%) and by the Inova health system (50%). The annual budget is about $7 million. Although the bottom line and fiscal responsibility are always important, the patient experience and Life with Cancer are both priorities at Inova.
Philanthropic Support
Life with Cancer was predominantly started as a philanthropic organization with a gift from a husband whose wife had died from cancer. Over the years, the community has continued to support the program, primarily through two events run by community members: the Lobster Extravaganza and the Joan Hisaoka Make a Difference Gala.
An Opportunity to Raise Awareness of and Enhance Supportive and Integrative Care Programs and Services
The Inova Schar Cancer Institute wanted to help more patients access supportive and integrative care and learn how to continue to enhance Life with Cancer.
Helping Patients Understand and Access Supportive and Integrative Care
Getting the right patient to the right programs and services at the right time is still a challenge for the team at Life with Cancer, as it is for similar programs at other cancer centers. The process for informing patients about Life with Cancer includes flyers in the new patient welcome packet and discussions with nurses during new patient education. Routine distress screening often results in referrals to Life with Cancer.
Anyone on the treatment team can refer patients to Life with Cancer. Patients can also participate in programs and services on their own. But after a cancer diagnosis, focusing on integrative care and choosing from the hundreds of programs and services can be overwhelming.
“Patients usually can’t take part in this when they first start treatment. As things start to settle down and they get into a routine, there is more opportunity for uptake,” says Bires. “But they have already done the education by then and don’t have a process to check back in with patients.”
Increasing Adoption Among Physicians
The team at Life with Cancer would also like to increase physician engagement with supportive care. Although some physicians have integrated supportive care into their patient care and refer all of their patients to Life with Cancer, others refer only some patients to Life with Cancer. Another problem for physicians is knowing which symptoms different programs and services target.
“Supportive care is often delegated to advanced practice providers, nurses, and clinical therapists by oncologists with limited time, but it’s critical for physicians to be actively involved.”
Oncologists in particular could play a larger role in integrative oncology; however, they are hampered by increased demands on their time and documentation requirements. “The discrepancy between what oncologists are capable of delivering to a patient and what we can actually do has gotten worse,” says Dr. Wadlow.
An Opportunity to Expand and Enhance Integrative Oncology
Participating in the Integrative Oncology Leadership Collaborative enabled the team at the Inova Schar Cancer Institute to expand and enhance integrative oncology. Bires led the team and Dr. Wadlow led the implementation work related to the collaborative.
Along with helping more patients access integrative care and enhancing Life with Cancer, the Integrative Oncology Leadership Collaborative gave the Life with Cancer team the opportunity to help to create, test, and refine the HOPE for Cancer Care tools to make whole person cancer care routine.
HOPE stands for Healing-Oriented Practices & Environments. The HOPE for Cancer Care tools are based on the HOPE Note Toolkit, a set of integrative health tools developed for use in whole person primary care.
The toolkit consists of the:
- Personal Health Inventory
- HOPE Note
- personalized health plan
- related supporting tools
The Integrative Oncology Leadership Collaborative used an approach to integrative oncology called whole person cancer care. This approach focuses on what matters most to the patient and integrates each patient’s personal determinants of healing into their cancer care.
Whole Person Cancer Care
Whole person cancer starts by determining “what matters” to a patient and uses conventional treatments, complementary therapies, behavior, lifestyle, and self-care approaches to combat the side effects of cancer care and help restore the quality of life and length of life for patients.
Through the inclusion of evidence-based therapies such as nutrition, movement, meditation, and others, patients activate their individual ability to heal as they go through cancer treatment and into survivorship.
The Inova Schar Cancer Institute was one of 15 cancer centers and other organizations that participated in the Integrative Oncology Leadership Collaborative. Samueli Integrative Health Programs ran the collaborative from April 2021 to December 2022.
Learn more about the Integrative Oncology Leadership Collaborative (PDF).
Shifting the Focus from Disease-Specific Care to Whole Person Care
Matching Patients With the Right Supportive Care Programs at the Right Time
During the Integrative Oncology Leadership Collaborative, the Inova Schar Cancer Institute team began to shift the focus from disease-specific care to whole person care by piloting the Personal Health Inventory (PHI) in one clinic and using this as an opportunity to better understand patients’ integrative care needs from day one. They also learned more about how other cancer centers were providing integrative and supportive care and established connections and collaborations that will help them continue to enhance Life with Cancer.
Using the PHI to Focus on What Matters Most to Patients
The PHI is a way for oncology care teams to explain whole person cancer care to patients and focus the discussion on determinants of health, healing, and self-care. Oncology care teams use the PHI to identify and address what matters most to the patient. This process helps engage the patient in shared decision making about their health and healing, putting them front and center in the care plan. Providers offer evidence and support to help patients meet those goals.
With the help of the Life with Cancer team and teams from the other participating cancer centers, the Integrative Oncology Leadership Collaborative created a new version of the PHI focused on cancer care. The revisions deleted questions that were not appropriate for cancer patients and added:
- The Functional Assessment of Cancer Therapy–General 7 (FACT-G7) to assess “How is your health and wellbeing now?”
- “What is most important for you in life? What brings you joy?” in place of “What matters to you? Why do you want to be healthy?”
- “What do I need to know about you as a person to give you the best care possible?” (derived from the Patient Dignity Question)
Pilot Program Focuses on People, Not Tumors
Dr. Wadlow piloted the PHI in his Gastrointestinal Oncology Multidisciplinary Clinic. Thirty-seven patients completed the PHI on the Inova patient portal before their visit with him. This helped the team deliver integrative oncology programs and services in the context of each patient and their life challenges and helped physicians see patients as people rather than tumors.
“Transitioning from disease- or tumor-specific care to whole person care requires a team effort. As the primary manager of cancer, the oncologist sets the tone.”
Multidisciplinary Case Conferences
Nurse navigators or behavioral health therapists summarize each patient’s PHI and present the summary during the multidisciplinary case conferences. “We include what’s important to the patient, which provides a little bit of context that this is a person and not just a tumor,” says Dr. Wadlow.
He admits that this approach was “a little jarring” initially because it was so different from the usual disease- or tumor-specific approach. “Where it may have felt funny to talk at first about someone who wants to spend time with their grandchildren instead of talking about their CT scan, this became accepted and part of our culture,” says Dr. Wadlow.
Staff Identify Key Patient Needs
Reviewing data from all patients who completed the PHI enabled Life with Cancer staff to home in on key patient needs—stress management and insomnia—and programs and services that could meet those needs. “This helped us narrow down what to refer and connect the patients with the right program or service quickly,” said Bires. In the pilot program, a nurse navigator or a behavioral health therapist referred patients to Life with Cancer programs and services.
“We’re more focused on personalized, whole person care now. We have a system for asking these questions and implementing it into our patients’ care plans.”
Key Insights About Implementing Integrative Oncology
Integrative oncology takes a team.
Implementing integrative oncology takes a team that includes oncologists, other physicians, staff working in integrative oncology or supportive care, and health care administrators. Obtaining buy-in from oncologists and other physicians and health care administrators is crucial.
“You have to have supportive leadership, people who will invest time, money, and personnel in integrative oncology,” says Dr. Wadlow.
Start small.
Hire one person and pick one area to get started. Conduct a short survey of patients and talk to oncologists and other physicians to identify key needs at your cancer center. Key needs for patients at Inova Schar Cancer Institute are programs and services related to nutrition, insomnia, and fatigue, according to data captured through distress screening.
Focus on group programs.
Group programs require fewer resources and impact more patients than one-on-one programs. They are a great way to get started in offering integrative oncology.
Collaborate with community members.
Many organizations that are not affiliated with health systems are already providing programs and services related to integrative oncology. Creating partnerships with some of these organizations is an efficient way to launch integrative oncology programs and services.
In seeking support from health care administrators, focus on improving patient outcomes and the patient experience and reducing physician burnout.
Although providing integrative oncology is the right thing to do, data on the differences to the bottom line, improving the patient experience, and reducing physician burnout are far more persuasive to health care administrators.
Integrative oncology reduces costs by improving adherence to treatment and patients’ quality of life. It reduces physician burnout and increases their efficiency by enabling integrative oncology staff and advanced practice providers to provide more patient care and alleviating symptoms that physicians would normally handle.
“Without leadership buy-in for integrative oncology, it’s hard to be successful,” says Bires. “Talking to leadership in a language they understand is really important.”
Emphasize how integrative oncology attracts more patients by making the cancer center stand out from other cancer centers.
Competition for patients is common in today’s health care environment. “Integrative oncology is important to the patient experience,” says Dr. Wadlow. “Patients want to go where they can get the best experience.”
Look for philanthropy champions.
Life with Cancer raises about $2.75 million each year from philanthropy. Champions from the community run the two key annual events and are persuasive when asking other community members for donations.
Challenges and Lessons Learned
The Inova Schar Cancer Institute team faced the following challenges and learned the following lessons in expanding access to integrative oncology and enhancing Life with Cancer.
Try to reach patients throughout their cancer journey.
Patients have different needs at different times in their cancer journey. After being diagnosed and at the beginning of treatment, patients are overwhelmed and often unable to consider integrative oncology. Their needs and interest in integrative oncology change during and after treatment.
Most of the information patients currently receive about Life with Cancer is provided early in the cancer journey. Getting the right patient to the right programs and services at the right time is still a challenge.
While using the PHI may help increase the use of integrative oncology during treatment, more work is necessary to try to reach patients more often.
Allocating staff to continually follow up with patients is not financially feasible. Artificial intelligence may have the potential to help do this in an affordable way.
Pilot programs increase efficiency when implementing change.
Changing processes such as adding the PHI before patient visits and incorporating key results in the multidisciplinary case conferences is difficult. “It took a real team effort to make sure we were doing something useful,” says Dr. Wadlow. Doing a small pilot first to develop and refine the processes was key in reducing wasted time and effort.
Be aware of equity issues in delivering integrative oncology.
Lack of economic stability and lack of payment and reimbursement for integrative oncology create equity issues. “If you can’t get someplace or put food on the table, it’s not likely you’ll be able to focus on anxiety, depression, or other symptoms,’’ says Bires.
Also, Life with Cancer tends to provide more assistance to patients with the highest levels of distress. “The most distressed and most resourced patients can engage most with Life with Cancer,” says Dr. Wadlow. “The struggle is finding people with lesser degrees of distress and people who can’t access services due to issues with fundamental needs.”
Helping to Make Whole Person Cancer Care Routine
Along with beginning to shift the focus from disease-specific care to whole person care and establishing connections and collaborations that will help the team continue to enhance Life with Cancer, the team from the Inova Schar Cancer Institute worked with teams at other cancer centers to review and discuss the current state of the science, gaps, and future opportunities in whole person cancer care and create, test, and refine the HOPE for Cancer Care tools.
Benefits of the Integrative Oncology Leadership Collaborative
Finding Tools, Ideas, and a Sense of Community
During the Integrative Oncology Leadership Collaborative, the Inova Schar Cancer Institute team found practical tools and ideas to enhance their integrative oncology programs and services, learned from the successes and challenges of other cancer center teams, and met and established ongoing relationships with some of those teams.
Practical Tools and Ideas
Participating in the Integrative Oncology Leadership Collaborative reinforced the importance of giving patients access to integrative oncology and provided practical tools and ideas for doing this better. The Inova Schar Cancer Institute team used the collaborative’s cancer-focused PHI to identify and address what matters most to patients and start to shift the culture from treating disease to treating people.
Learning from Other Cancer Care Teams
Learning about work in integrative oncology at other cancer centers, including successes and challenges, gave the Inova Schar Cancer Institute team ideas for improving or expanding their programs and services. For example, the use of metrics by the Sidney Kimmel Cancer Center gave the team ideas for the future.
“The Integrative Oncology Leadership Collaborative motivated us to institute the PHI initiative, toward the goal of referring the right patients to the right services at the right time.”
“Anytime we have an opportunity to learn from other folks, only good things can come from that.”
Dedicating time to participate in the Integrative Oncology Leadership Collaborative enabled Bires to focus strategically on integrative oncology and ways to use what she was learning to match more patients with the right Life with Cancer programs and services at the right time.
A Sense of Community
Working in integrative oncology and trying to provide patients with services that are not currently reimbursable by most types of insurance can be “very isolating,” says Bires. “To be in a space where we’re all talking about integrative oncology was reassuring and less isolating. Even though it’s difficult, we want to continue moving forward, even if only a little at a time.”
The connections made and collaborations started during the Integrative Oncology Leadership Collaborative will strengthen Life with Cancer going forward. “Being connected to other cancer centers is important. We continue to talk to those centers about cases and care,” says Bires.
Next Steps
Continuing Work in Integrative Oncology
The Inova Schar Cancer Institute continues the work they began during the Integrative Oncology Leadership Collaborative with the PHI and is exploring ways to match more patients with the right supportive care programs at the right time.
A New System and a New Survivorship Program
In 2023, Life with Cancer launched a new registration system that should make it easier for patients to find programs and services and a Survivorship Clinic that provides comprehensive care focused on resiliency after treatment. Patients complete a survey before the first appointment to help staff identify some of their most important concerns, followed by a survivorship assessment at the appointment with an advanced practice provider.
Patients will be referred to programs and services based on their needs. Programs and services include:
- education on signs and symptoms of recurrence and prevention of recurrence
- addressing post-treatment side effects
- fear of recurrence and emotional health
- social drivers of health and barriers to care
- assistance with lifestyle modifications to promote recovery and health
- sexual health care
- nutrition care
- coordination of care for post-treatment, long-term survivorship care needs
Remote Monitoring Facilitates Integrative Oncology
Also in 2023, the Inova Schar Cancer Institute began piloting a digital remote patient monitoring platform, Locus Health, to manage symptoms of patients on active chemotherapy. The goal is to reduce preventable escalations in care, such as trips to the emergency department and hospitalizations.
Patients can use Locus Health on any phone, tablet, or computer. If they do not have the necessary technology, the Inova Schar Cancer Institute provides a tablet. Patients also receive Bluetooth-compatible blood pressure and temperature monitors. The platform includes a library of educational materials on managing symptoms of chemotherapy.
Information to Personalize Recommendations
Dr. Wadlow got involved with remote monitoring because he sees the potential to go beyond collecting health data. Locus Health can also be used for communication between physicians and patients to learn about symptoms and distress and to educate patients.
Information about symptoms and distress would be used to “help frame the conversation during an
appointment and personalize recommended Life with Cancer resources,” says Dr. Wadlow. The physician
can also give patients assignments on what to read or watch in the educational library based on
their symptoms.
Reimbursable Care
Remote patient monitoring is reimbursable. Currently, Dr. Wadlow is piloting use of Locus Health with patients who have private insurance. Once he has worked out the kinks in the process and gathered sufficient data, he will expand its use and seek reimbursement. Dr. Wadlow also plans to expand the use of the PHI to patients who are using Locus Health.
These movements toward more whole person cancer care are ongoing and remain informed by participation in the Integrative Oncology Leadership Collaborative.
Topics: Cancer