Key Takeaways
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Experts say capturing the patient voice is essential for cancer care
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Patient-reported outcomes collection is a vehicle for leveraging the patient voice
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Oncologists can collect patient-reported outcomes while being cognizant of both provider workflows and patient experiences
Patient-centered care. Shared-decision making. Patient engagement. Everywhere you look in healthcare there is acknowledgement of the power of patients as partners in their own care - to do more than just leverage medical history but also their voices and experiences to improve their care and the care of others.
In cancer care especially, leveraging patient voices is vitally important. Yet, patients with ranging levels of health literacy, experiencing one of the most frightening clinical diagnoses, aren’t always equipped to identify and relay information that clinicians would find valuable. As stated by Mary E Cooley, PhD, RN, FAAN of the Dana-Farber Cancer Institute:
“Patient's voice in cancer care is absolutely critical. Patients that are diagnosed with cancer experience a lot of distress initially, making it really difficult to understand information that's provided to them. A lot of times they'll go into their appointments and may not think that their symptoms are the essential thing to bring up during the appointment.”
So, how do we help patients identify the essential pieces of the puzzle? Dr. Cooley advocates for the importance of collecting patient-reported outcomes:
“Having patient reported outcomes makes it very easy for the clinician to actually see the symptoms that are most distressing to patients. This is essential because untreated symptoms are related to increased morbidity, increased cost, and mortality from cancer and its treatment.”
Capturing the patient voice
How can oncologists collect patient-reported outcomes data from their patients, without placing additional burden on them as they fight for their wellbeing? And how can they manage the collection and analysis of this data without adding to the provider workflow? A key question when 45% of oncologists in the United States are experiencing burnout.
It comes down to two things:
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Automate outreach - but make it personal
Organizations do not have the time or bandwidth to manually collect patient-reported outcomes. Instead, leverage automated outreach to patients but ensure the collection is personalized. Outreach should be specific to individual patients, their diagnoses, and their unique care journeys. Ensure no unnecessary or repetitive questions are asked, and make sure questions are asked at the times and in the ways patients prefer.
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Ensure data is actionable
It would be cruel to take time from patients fighting cancer and then not leverage the data they’ve provided – so make sure the data you collect is actionable. Reports are valuable but also ensure there are real-time insights, accessible directly within the EHR, so you can refer to the data at the point of care, with your patients, and make educated decisions together.
Learn more
Not mentioned above but vitally important – you’re the best at what you do and so are PRO experts. Leverage resources that can combine the technology and expertise you need to scale a patient-reported outcomes program in oncology.
Our PROs in cancer care fact sheet is a great resource for learning more.
