Can a Human-Centric Design help Improve Outcomes for Cancer Patients? | Deloitte US has been saved
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By Courtney Sherman, managing director, and Christina Buckless, manager, Deloitte Consulting LLP
The complexity and uncertainty that envelops the cancer experience is unfortunately all too familiar for many of us. Each cancer patient’s physical and mental well-being can fluctuate substantially depending on where they are in their treatment. The days and weeks after a chemotherapy treatment, for example, can vary across patients, with some patients suffering silently through a roller coaster of side-effects.
Side-effects are often under-reported by cancer patients for a variety of reasons. Some patients worry that their treatment could be suspended if they report certain side-effects. Others might not understand clinical terminology, or they simply might not feel comfortable sharing personal information with their care team. Unfortunately, without this first-hand information, clinicians have less opportunity to intervene or adjust treatment to improve clinical outcomes.
To bridge this gap, clinicians and care teams should consider building and fostering an environment that promotes the sharing of patient-reported outcomes (PROs)—or data shared directly by a patient without interpretation of the response by a clinician or anyone else.1 PRO data includes, but is not limited to, health-related quality of life (including functional status), symptoms, and symptom burden. Moreover, some studies show that clinical interventions based on PROs can have significant benefits for cancer patients, including increased overall survival rates and longer toleration of chemotherapy.2 While the benefits of PROs for cancer care are clear, existing PRO standards and questionnaires tend to be research-focused, rather than patient-centered. While PRO standards have been widely used in clinical trials, those surveys tend to be dense and can be overwhelming.
Six lessons learned from building a holistic experience for cancer patients
Deloitte recently worked with a health system to design a digital experience that could capture and triage PROs for cancer patients. Here are six key lessons that emerged:
Lesson 1: Promote a value exchange
Successful PRO solutions require a clear value exchange. If patients are asked to share information about their health, or describe how they are feeling to providers, they should receive something of value in return. This could be in the form of educational materials related to their condition, or data related to how their status compares to others who have the same condition. Patients might also want to see the impact their PROs have on care decisions and treatment plans. Nurse follow-ups, further probes during physician appointments, and medication adjustments are some of the ways a health system can demonstrate how PROs are being incorporated. This can help patients see the connection between the sharing of their health information and the support they receive from their care team.
Lesson 2: Reduce the burden on the system
In a recent blog post, we explained how a human-centered design approach could help to counter rising burnout rates among nurses and other clinicians. Designing a human-centered digital solution to capture PROs could use a similar strategy. Understanding how to operationalize a new digital solution first requires an understanding of existing clinical workflows. Any proposed solution should minimize, not add to, workload and effort for clinicians. Similarly, some oncology patients are already navigating and managing the different pathways of their care and day-to-day obligations and responsibilities beyond their care. Prioritized data elements should strike a balance between delivering need-to-know information to clinicians and reducing the burden on patients to provide data.
Lesson 3: Advance health equity
PRO collection and patient monitoring have made it easier for clinicians to identify patients who might not receive the support they need. It can also help pinpoint solutions that address nuanced needs without requiring time-consuming or costly appointments. Through a multi-channel approach (such as telephonic, web, mobile, and in-person), patients who have limited access to technology can still communicate their treatment experiences to clinicians. Additionally, a PRO approach should broaden the aperture of patient side-effects and symptoms beyond physical impacts to include functional, emotional, and social health. This would extend the analysis to drivers of a patient’s health and directly integrate those drivers into care decisions. Across the health system, capturing this information from patients can enable a broader analysis of its patient population, sparking new ideas for offerings, community involvement, and the health ecosystem.
Lesson 4: Bring a holistic perspective
PRO collection can create a broader, more holistic view of the patient that goes beyond straightforward clinical assessments or interventions by a patient’s oncologist or care team. Depending on the reported symptom or side-effect there is an opportunity to connect patients with specialists or other cancer-care services. For example, if a patient reports feeling consistently sad, the patient could be connected to an oncology-focused psychologist. If the patient reports sustained loss of appetite, the patient could be connected to a nutritionist or dietician. While the majority of PROs likely would be triaged to clinical staff, there are potential opportunities to connect patients with more holistic and/or targeted resources across the health system.
Lesson 5: Listen to the patient
While there are certainly exciting developments around connected, passive health data collection (e.g., wearable fitness trackers, always-on sensors), there is still value in hearing directly from the patient. For instance, blurred vision may not be easily evaluated by remote wearable monitors and could go unreported unless prompted by the patient or the provider. Additionally, certain contextual and quality-of-life questions (e.g., how much does a symptom interfere with your day-to-day activities?) simply can’t be answered by a wearable tracker. These PROs—along with and passive health data—can be combined to build a clearer, more nuanced picture of a patients’ health. Layering information is often accomplished at the start of in-person and virtual appointments. Doing so digitally, frequently, and remotely supports a consistent view of a patient’s health, and it also facilitates information sharing in an increasingly interoperable world.
Lesson 6: Make it personal
In the Future of HealthTM that Deloitte envisions, we expect the patient to be at the center of any solution. The ability to understand patient needs and motivations is the foundation of a human-centric solution. Adapting to patient preferences—around communication cadence, content, and communication channel—should be explored by providers. Some patients might prefer highly detailed information from their clinicians shared via text, while others might favor summarized views with only key details explained verbally. Tailoring the PRO solution to each patient’s unique needs and preferences can help establish trust and ultimately drive higher patient engagement rates and information sharing.
The COVID-19 pandemic transformed all facets of health care, and cancer care is no exception. Many oncology units took a cautious approach to the pandemic and reduced in-person appointments and non-urgent treatments and procedures. While oncology operations have largely resumed, timely communication between patients and clinicians remains a priority due to postponed cancer screenings, fewer in-person interactions (and more telehealth), and social-distancing procedures that kept some caregivers from attending patient appointments.
This dynamic, in addition to the rise of at-home oral chemotherapies, has made it more crucial for clinicians to build and foster an environment that encourages the sharing of PROs. We see an opportunity to reframe PROs with human-centric solutions that improve care and health outcomes for cancer patients.
1. Patient reported outcomes are any reports of the status of a patient's health condition, health related behavior or health care experience that comes directly from the patient, without interpretation of the response by a clinician or anyone else, National Quality Forum
2. Overall Survival Results of a Trial Assessing Patient-Reported Outcomes for Symptom Monitoring During Routine Cancer Treatment, JAMA, July 11, 2017
Acknowledgements: Ashley Chan, Matt Josephson, Tyler Wigington, Ryan Youra