Giving Voice to Patients through Technology: An Interview with Cathleen McBurney, Patient Advocate and Cancer Survivor
Cathleen McBurney, Patient Engagement Manager at Visiontree Software, Inc., describes all the ways in which patients and their care teams can benefit from ePROs, a growing and critical way to capture key outcomes data and enhance the total care journey.
What are electronic patient reported outcomes?
Electronic patient reported outcomes, or ePROs, is a mouthful of buzz words that simply refer to the questionnaires that patients are asked to fill out by their doctors related to their disease, treatments, and symptoms. The questions themselves can document a patient’s experience with physical, mental, and social well-being. Some examples include questions about pain, nausea, dry mouth, skin pain, swallowing, fatigue, numbness or tingling, taste, activity level, depression and more. Depending on the disease and treatment modality, the questions can vary, but all relate to changes in a patient’s quality of life. In the past, ePROs were filled out on paper and patients would have to mail them back to their doctors, but today there are software programs and tools that collect the data. Patients can now track and report their outcomes using familiar and personal devices making it much easier to comply and much easier for clinicians and researchers to organize the data.
Why are outcomes measures important in healthcare?
It doesn’t get any more accurate than patient reported data. With this data, the healthcare industry has the ability to use evidence-based decision-making to assess the value of treatments. Patient-reported evidence can help inform decisions like whether or not to continue a specific regimen on certain disease types, whether or not to increase therapeutic dose, or maybe even determine that it might be worth trying a specific regimen on a new disease type.
Why are outcomes measures important to you as a patient?
As a patient, I know that doctors are evaluating my responses shortly after I complete the forms. With actionable alerts, I also know that if I respond at a certain threshold for things like pain, that my doctors will be alerted of my response and will contact me accordingly. It’s a bi-directional form of communication that exists between myself and my care team between appointments and sometimes even years after treatment. It’s a great way to keep patients engaged long term.
How do ePROs help you in your role as an ambassador for patients?
Being an ambassador/advocate for patients has been my passion since being diagnosed with my own rare cancer eight years ago. Outcomes measures give voice to the voiceless. So many people who don’t know how to advocate, or simply never thought to, don’t realize they are advocating for themselves and so many others just by filling out the forms. Oftentimes, people are filling out forms just because they have to, not realizing that the information can not only have an impact on their care, but also on a whole cohort of other patients. Patient responses are helping to change the landscape of healthcare, from the way doctors treat to the way patients respond to that treatment. The patient voice is a powerful tool that is gaining more traction through patient advocacy efforts around treatments and equity. It’s so exciting to be a part of that change.
How do electronic patient reported outcome measures work for patients?
Rather than paper forms, patients receive questionnaires electronically. Sometimes there are electronic tablets at the doctor’s office for patients to fill out the forms (especially baseline), but usually they are sent to patients via their portal or email. If there are multiple forms to be completed, each form automatically populates the basic data after the patient completes the first form. Each form has a series of questions that ask patients to respond by clicking the appropriate response. Some forms require responses on a scale from 0-10 with ‘Not Present’ being a 0 and 10 being ‘As Bad as You Can Imagine’. Other forms use rating scales such as ‘Not at All’ all the way to ‘Very Much’. Regardless of the scale, the severity (or not) of symptoms is fairly well defined by the patient’s responses. It’s then up to the doctors to reach out to the patients if they deem it necessary.
Can you walk us through how patient reported outcomes are collected? Is it before treatment, during and/or after?
Patient reported outcomes are collected over a series of timepoints, starting with a baseline assessment which is usually close to the first patient visit with their care team. This gives doctors a snapshot of the patient’s symptoms before any treatments. Once treatment starts, the patient is set up on a schedule with auto delivery of patient reported outcome questionnaires, either via the patient portal or email. Timepoints are measured from baseline to three months after treatment, six months, 12 months, 18 months, two years, then annually up to 10 years. Of course, each doctor can use whatever timepoints they choose, unless it’s part of a research registry with set timepoints. Keeping patients engaged long term is an important part of survivorship and having timepoints set to 10 years is just one important way to do this.
What is the value of patient reported outcomes to you as a patient?
When I first started my treatment and was asked to be part of a research study at MD Anderson for proton therapy, I didn’t realize the implications of my participation. I assumed the information would only be used at MD Anderson and that the ePRO questionnaires were written by MD Anderson doctors. I thought it might help my treatment in some way and maybe other patients at that hospital. I didn’t realize that these same forms were being used by other institutions and that the information was being collected and shared to help improve patient outcomes around the globe. This immediately changed the way I looked at the forms and the way I felt about compliance. It made me realize that I had a voice far beyond Houston, TX where I had my treatment. My voice was being heard in my responses, and that was triggering positive change for future patients around the world. And not only my voice, but hundreds of thousands of patient voices are generating change through their participation. To that note, research has shown that when electronic patient reported outcomes have been used, there has been a 40% improvement in compliance, and tied to that is a 20% improvement in patient welfare*. How amazing is that?!
Do you believe that clinical performance should be focused on outcomes?
I think there’s something to be said for tying clinical performance to outcomes. Aren’t outcomes essentially the most important thing in healthcare? Isn’t that why doctors do what they do? Outcome measures can help foster best practices in healthcare if they are properly evaluated. On that note, I think there are a couple of important questions to ask: Are patients recovering from the illness they were treated for? Are patients with chronic illnesses living their best possible life? If they aren’t, then the healthcare systems should be looking at new, innovative ways to improve care, and on the flip side seeing where they fell short and how to fix any breakdowns in care.
How do you think patient outcomes measures help doctors?
Outcomes measures not only help improve treatments, but they also help hold clinicians accountable. The patient-collected information gives real time, patient reported data, that should be acted upon accordingly. If outcomes don’t show improvement over time, then the care team should act upon the patient-reported information and follow-up. Doctors and clinicians should see the whole patient through outcomes measures across their health journey, something I don’t think has necessarily always been the case in the past. Anything that helps improve patient engagement, care and communication is vital to the healthcare industry. What better means than the patient voice to accomplish that!
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The views, information and opinions expressed in this interview are those of the speakers and do not necessarily represent those of Brainlab.
*Information on file at Visiontree Software, Inc.