Our Take

Amplifying the Patient Voice in Oncology through ePROs

Patient centricity has been a longstanding aspiration for many health care organizations. But the push to understand patient-defined value, to enable shared decision-making, and to prepare for new regulatory requirements is creating more urgency today than ever before.

 

While progressive organizations are investing in capturing patient-reported outcomes (PROs), specific guidance for how PROs should inform treatment decisions remains sparse. At the same time, growth of digital technologies like wearables, remote monitoring, and EHR-based tools are creating new ways of capturing patient-focused data in real time.

So, how can providers meaningfully capture the patient voice through ePROs? How should PRO data inform treatment decisions and value analysis? What role should stakeholders across the health care ecosystem play in advancing the use of PROs?

Across the last four months, Advisory Board partnered with Pfizer Oncology to start to address these questions. Advisory Board spoke with 50+ leaders from across the healthcare industry to understand where the most compelling opportunities for ePROs exist—and where root cause barriers are preventing progress.

We also hosted a virtual workshop, sponsored by Pfizer, designed to unpack those questions, surface areas of shared aspiration, and identify opportunities for cross-industry collaboration. Pfizer participated in the workshop, along with a range of progressive organizations, like MD Anderson, Carevive, Tennessee Oncology, Patient Advocate Foundation, COTA, Memorial Sloan Kettering, UnitedHealthcare, One Oncology, Noona, Purchaser Business Group on Health, and many more.

Below are 5 key takeaways from the research and workshop discussion.

SPONSORED BY
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This article is sponsored by Pfizer. Advisory Board experts wrote the article, conducting the underlying research independently and objectively. Pfizer had the opportunity to review the article.

  • Key takeaway

    There is growing interest in amplifying patient voice across the health care industry, but different stakeholder groups often have distinct aims.

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  • Key takeaway

    Patient-reported outcomes (PROs) are one of many critical tools for capturing patient voice, but patient-reported outcomes are not always patient-centered.

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  • Key takeaway

    ePROs can help accelerate the shift from reactive to proactive treatment management.

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  • Key takeaway

    Over time, the collection of ePROs can generate enough real-world evidence to enable more personalized treatment decisions.

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  • Key takeaway

    Several root cause barriers make widespread use of ePROs difficult today; but the transition to value-based care, greater utilization of RPM, and a shift to care at home will help accelerate ePRO adoption.

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Parting thoughts:

Achieving a collective ambition for ePROs in cancer care can’t happen unless we plan for and address the adaptive challenges, not just the technical challenges, standing in our way. We need to adapt our culture, thoughts, and behaviors in order to make space for the myriad changes this type of work requires. Doing so likely means challenging our entrenched ideas about our identities, roles, and objectives as health care leaders. If providers, patients, payers, and other industry leaders are not bought in emotionally on the value of ePROs as an integral part of delivering good patient care, then efforts to expand adoption are bound to stall. To advance ePROs, health care leaders should:

  1. Expand the definition of ROI beyond clinical and financial measures. As an industry, we need to think more broadly about how we define ROI to include measures of impact such as improved communication, patient engagement, adherence, patient loyalty, or whether an individual’s treatment goals were met. 
  2. Use storytelling and case studies to elevate moments of impact. Data can’t always win hearts and minds the way stories can. By sharing stories of organizations that implemented ePRO programs and meaningfully impacted patients as a result, we can start to build the culture and buy-in required for behavior change.
  3. Collaborate to build consensus. All stakeholders can benefit from advancing ePROs, but progress requires consensus and collaboration. A starting point is to come together to build consensus around which PROMs and which “ROI” metrics are most meaningful—to lay the groundwork for collaborating to enable ePRO data collection and utility in patient care. 

Workshop Participants

  • Abbey Kaler, MS, APRN, FNP-C, Nurse Practitioner, Advanced Breast Cancer (ABC) Program, MD Anderson Cancer Center

  • Abi Baldwin Medsker, MSN, RN, OCN, Associate Director, Product Development & Business Delivery, Memorial Sloan Kettering Cancer Center

  • Ammu Irivinti, Principal, ICAREdata Use Case Lead, CodeX HL7 FHIR Accelerator, MITRE Corp.

  • Becky Borgert, PharmD, BCOP, Senior Director of Oncology Clinical Strategy and Innovation, Magellan Rx Management

  • Brian Morrissey, MBA, Vice President, Oncology National Customer Group, Pfizer

  • Cardinale Smith, MD, PhD, Director of Quality for Cancer Services, Mount Sinai Health System

  • Christine Gilroy, MD, MS, Associate Chief Medical Officer, Bright Health

  • Claire Snyder, PhD, MHS, Professor of Medicine, Oncology, and Health Policy & Management; Program Director, Building Lifestyle, Outcomes, and Care Services Research in Cancer (BLOCS), Johns Hopkins Schools of Medicine and Public Health

  • Dawn Holcombe, FACMPE, MBA, ACHE, President, DGH Consulting; Director, NAMCP Medical Directors Institute Oncology Council; Executive Director, Connecticut Oncology Association; President, National Oncology State Network

  • Eleanor Perfetto, PhD, MS, EVP for Strategic Initiatives. National Health Council

  • Emma Hoo, Director, Value-Based Purchasing, Pacific Business Group on Health

  • Heather Jim, PhD, Senior Member and Program Co-Leader, Moffitt Cancer Center

  • Heidi McClelland, PharmD, BCACP, Director, Oncology Health Data Analytics Specialist, Pfizer

  • Holger Keim, PhD, MBA, Senior Director, North America Medical Affairs, Oncology, Pfizer

  • Jennifer Malin, MD, PhD, Chief Medical Officer, Oncology and Genetics, UnitedHealthcare

  • Laurie Smith, MBA, MPH, Vice President, Marketing and Business Development, WiserCare

  • Lee Schwartzberg, MD, FACP, Chief Medical Officer & Board Member, OneOncology

  • Maddy Herzfeld, RN, BSN, OCN, Founder and Vice Chairman, Carevive

  • Manav Sevak, Chief Executive Officer & Co-Founder, Memora Health

  • Michael Graff, Co-founder and Chief Product Officer, Navigating Cancer

  • Natalie Dickson, MD, President, Chief Medical Officer, Tennessee Oncology

  • Rebekah Angove, PhD, Vice President, Patient Experience and Program Evaluation, Patient Advocate Foundation

  • Toni Perry, RN, MSN, Global Head of Evidence and Value, Noona by Varian Medical Systems

  • Ty Gluckman, MD, FACC, FAHA, Medical Director, Center for Cardiovascular Analytics, Research, and Data Science, Providence St. Joseph Health

  • Viraj Narayanan, MBA, SVP and General Manager, Life Sciences Business, COTA

     

Advisory Board Experts

 

De Saulet

Deirdre Saulet
Expert Partner

EXPERTISE
Oncology, Philanthropy


Expert overview
Image

Manasi Kapoor
Managing Director

EXPERTISE
Life Sciences


Expert overview
Katie Schmalkuche

Katie Schmalkuche
Research Consultant

EXPERTISE
Life Sciences


Expert overview

About the Sponsor

At Pfizer Oncology, we are committed to advancing medicines wherever we believe we can make a meaningful difference in the lives of people living with cancer. Today, we have an industry-leading portfolio of 24 approved innovative cancer medicines and biosimilars across more than 30 indications, including breast, genitourinary, colorectal, blood and lung cancers, as well as melanoma.

Learn More About Pfizer

This research and associated workshop were sponsored by Pfizer for educational purposes only. The content, views, and opinions contained herein are copyrighted by Advisory Board and all rights are reserved. Advisory Board experts wrote the content, conducting the underlying research independently and objectively. Advisory Board does not endorse any company, organization, product or brand mentioned herein.

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