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Ensuring Quality With Patient-Reported Outcomes and Electronic Health Records

A Conversation With Claire Snyder, MHS, PhD


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Claire Snyder, MHS, PhD

Claire Snyder, MHS, PhD

Accurately assessing the quality of cancer care over the continuum of treatment requires a special set of metrics and data-gathering methods. Moreover, with a growing number of cancer survivors, the post-treatment care involves primary care providers who are adept at managing the comorbidities associated with cancer care. To shed light on these important issues, The ASCO Post recently spoke with Claire Snyder, MHS, PhD, Professor of Medicine, Oncology, and Health Policy & Management at the Johns Hopkins School of Medicine and Bloomberg School of Public Health. Dr. Snyder is also Director of the Program on Building Lifestyle, Outcomes, and Care Services Research in Cancer at Johns Hopkins.

Patient-Reported Outcomes Research 

Please tell our readers a bit about your work in quality-of-life outcomes in cancer patients and how patient-reported outcome questionnaires fit into your research. 

When I was an undergraduate at Duke University, I had the opportunity to take a seminar on outcomes research with Dr. Joseph Lipscomb. The idea of evaluating different treatment options based on outcomes that matter to patients was incredibly compelling to me then and remains so to this day. Early in my career, I worked in consulting and helped industry sponsors incorporate patient-reported outcomes into their clinical trials. But about 15 years ago, my focus shifted to thinking about how quality-of-life and other patient-reported outcomes could be used for individual patient management. 

In this application of patient-reported outcomes, an individual patient completes a questionnaire about his/her functioning and well-being, and that patient’s data are reported to his/her clinician (and frequently also to the patient) to help monitor progress and inform management. My work today focuses primarily on using patient-reported outcomes in clinical practice, although I also continue to use them as outcome measures in research studies. In addition, we are very interested in exploring how patient-reported outcomes data collected for individual patient management can be aggregated, linked with other clinical information (eg, from electronic health records), and used for quality evaluations and comparative effectiveness research. 

Comparative effectiveness research was politicized right out of the gate as a euphemism for rationing. How do you get around that negative connotation? 

You can replace that term with patient-centered outcomes research, which is where the field went when comparative effectiveness became politicized. The idea is not just to compare different treatments but rather to compare different treatments on outcomes as they matter to patients. 

Streamlining the Use of Electronic Health Records 

Although it is generally agreed that gathering patient-reported outcomes from electronic health records offers an opportunity to enhance the care model, the process itself is often seen as onerous by overworked oncologists. Is there a way to streamline the process? 

I was part of a team that developed a “User’s Guide to Integrating Outcomes in Electronic Health Records,” which was funded by the Patient-Centered Outcomes Research Institute. The User’s Guide walks you step by step through the different considerations and options involved in integrating patient-reported outcomes into electronic health records. For each option there are relative advantages and disadvantages, so clinicians or organizations can figure which trade-off works best in their particular context. Clinicians increasingly want to see patient reports of their functional status and well-being along with clinic notes, lab reports, and imaging reports. 

“The idea of evaluating different treatment options based on outcomes that matter to patients was incredibly compelling to me then and remains so to this day.”
— Claire Snyder, MHS, PhD

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PatientViewpoint Webtool 

Please tell us about the PatientViewpoint webtool and what it is intended to do. 

When my focus began to shift to using patient-reported outcomes in clinical practice for individual patient management, a key consideration was how to collect the data and report the results as part of a clinical encounter. Along with my colleague, Dr. Albert Wu, and a multidisciplinary team, we developed the PatientViewpoint webtool. It was designed to house a library of patient-reported outcomes questionnaires and enable clinicians to “order” different questionnaires for their patients to complete—the same way they would order a laboratory test or imaging study. Clinicians could decide which patients would be asked to complete which questionnaire at what intervals. When it was time for patients to complete a questionnaire, they received an e-mail with a link to PatientViewpoint so they could go to the website and complete their assigned patient-reported outcomes. 

One of the major innovations of PatientViewpoint is that it integrated with what was then our homegrown electronic patient record. Our institution has since changed electronic health records, and we’re now thinking of other ways (such as mobile applications) to collect patient-reported outcomes and use them in clinical practice. 

Intersection Between Primary Care and Oncology Care 

Please tell us about your work in assessing the role of primary care in cancer survivorship. 

I am privileged to have my primary appointment in the Department of Medicine, in the Division of General Internal Medicine, at the Johns Hopkins School of Medicine. However, a primary care division is not necessarily the first place you would look to find a PhD cancer outcomes and health services researcher! Through my joint appointments in Oncology, and in our Bloomberg School of Public Health’s Department of Health Policy & Management, colleagues and I have been able to build a broad research agenda exploring the intersection between primary care and oncology care. 

My own personal research has focused on cancer survivorship. We have conducted a number of studies looking at the non–cancer-care needs of cancer survivors, and very consistently, we find that cancer survivors who have a primary care provider involved in their care are more likely to receive appropriate preventive and comorbid condition care. Colleagues of mine focus on the role of primary care providers in other parts of the cancer care continuum, such as screening and diagnosis. 

“We find that cancer survivors who have a primary care provider involved in their care are more likely to receive appropriate preventive and comorbid condition care.”
— Claire Synder, MHS, PhD

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One of the things we have looked at is the role of primary care providers in managing the comorbid conditions of patients with cancer. Given that patients with cancer tend to be older and to have multiple comorbid conditions, managing their cancer care in the context of their overall health is incredibly important. We also see that some cancer treatments can lead to long-term and late effects or exacerbate existing conditions, and I am interested in pursuing research examining how primary care and oncology providers can partner to make sure patients’ other health conditions are managed most effectively during cancer treatment and survivorship. 

Survivorship Care Plan Template 

You worked on a survivorship care plan template with other members of ASCO. Please describe the process and the tool. 

As the ASCO audience well knows, the recommendation for survivorship care planning emerged from an Institute of Medicine report, primarily based on face validity. However, as the ASCO audience also knows equally well, implementing survivorship care planning in practice has been challenging and time-consuming. Initial templates and approaches developed to support survivorship care planning included a lot of detail and were difficult to complete. At the same time, research suggested that primary care providers and other survivorship care plan users did not necessarily find all that detail helpful. As a result, ASCO led an effort to revise its survivorship care plan template. 

Our Task Force, under the leadership of Dr. Deborah Mayer, obtained input from key stakeholder groups including oncologists, nurses, patients, primary care providers, payers, and others to identify the essential elements of a survivorship care plan. The resulting template was significantly shorter than the original, and the hope is that it makes completing the survivorship care plans easier. 

Dr. Katherine Smith and I are currently leading a randomized controlled trial, “Simplifying Survivorship Care Planning,” to examine different approaches to delivering a care plan to determine which one is least burdensome while still being effective. Our primary outcome measure is whether patients receive the care recommended on their care plans. Secondary outcomes include whether they avoid tests that are not recommended and patient-reported outcomes such as knowledge, self-efficacy, information needs, and worry. The survivorship care plan templates being used in our study are based on the ASCO template. 

Closing Thoughts 

Please share some closing thoughts on integrating primary care into the cancer care continuum. 

During my nearly 20 years as a cancer researcher, I have always been impressed by how both my oncology and primary care colleagues don’t just treat patients, they care for them. I see it as my job to do research to develop tools and resources to help oncology and primary care providers work together to ensure that patients with cancer receive the best care possible. ■

DISCLOSURE: Dr. Snyder receives royalties from UptoDate for co-authoring a section on cancer survivorship. 


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