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Building Data Capacity for Patient-Centered Outcomes Research Interim Report 1 - Looking Ahead at Data Needs (2021) / Chapter Skim
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3 Patient Perspectives on Data Needs
Pages 29-40

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From page 29...
... Rebekah Angove shared her perspective based on her role as vice president for patient experience and program evaluation at the Patient Advocate Foundation (PAF) , a nonprofit organization that provides case management services and financial aid to those with chronic, life-threatening, and debilitating illnesses.
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From page 30...
... Angove highlighted several characteristics of meaningful patient engagement. First, she noted that engagement requires careful thinking about the range of experiences that are included in order to achieve representativeness.
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From page 31...
... Angove also emphasized the importance of communicating to patients the value of their contributions. Gary Epstein-Lubow, Brown University, discussed his experiences as team leader for the stakeholder engagement team for the National Institute on Aging's Imbedded Pragmatic Alzheimer's Disease and AD-related Dementias Clinical Trials Collaboratory (IMPACT Collaboratory)
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From page 32...
... There is also the risk of potential added burden for family members and caregivers in their roles as proxy respondents and missed opportunities for data linkage in the case of missing data from caregivers. Additional data challenges exist for research on dementia, according to Epstein-Lubow, including the following: • There is no standard measure set for people living with dementia.
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From page 33...
... One way to do this would be to rely on the CMS "Meaningful Measures" initiative, including use of new care planning codes, the annual wellness visit, and the MIPS dementia measures discussed earlier. Elisabeth Oehrlein discussed insights from her work at the National Health Council (NHC)
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From page 34...
... As an illustration of a model for moving forward, Oehrlein discussed the work of the EveryLife Foundation for Rare Diseases. Its report assessing the total economic burden of rare diseases was born out of the realization that the data that have been collected to date on direct medical costs really do not reflect the full patient experience, especially when it comes to rare diseases.3 EveryLife Foundation researchers have thought carefully about which costs are important to patients and how those data might be collected.
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From page 35...
... The data include individually generated, individually permissioned data, such as data from wearables and environment data, as well as system-generated individually permissioned data, such as data from electronic health records. Figure 3-1 illustrates the range of data sources considered by Evidation.
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From page 36...
... Evidation Health (2021)
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From page 37...
... Examples discussed included predicting flare events in an autoimmune condition using wearable and survey data; enhancing recovery modeling for limb surgeries with personalized predictions of outcome tailored to individual characteristics; and early detection, monitoring, and management of COVID-19 in everyday life. For a potential roadmap of how to achieve the full potential of persongenerated health data and digital clinical measures, Patrick-Lake referenced
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From page 38...
... Evidation Health (2021)
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From page 39...
... CONCLUSIONS Representatives of patient organizations argued that PCOR data are often not focused on the types of issues that are truly important to people and that would enable them to find answers to the questions they tend to have about their treatment options and potential outcomes. Information on costs was highlighted as particularly important, which is in line with the goals of the recently broadened scope of PCOR to take into consideration "the potential burdens and economic impacts of the utilization of medical treatments, items, and services." CONCLUSION 3-1: The patient-centered outcomes research data infrastructure has not reached its full potential to provide data that can answer questions that matter to patients and enable them to make informed decisions.
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Key Terms

  • meaningful patient
  • pcor data
  • clinical trials
  • digital technologies
  • health data

  • patient experience
  • oehrlein discussed
  • rare diseases
  • patient involvement
  • patient engagement

  • patient organizations
  • patient advocacy
  • permissioned data
  • health records
  • electronic health

  • evidation health
  • data infrastructure
  • outcomes data
  • routine clinical
  • research network

  • care partners
  • measure set
  • statutory scope
  • chronic fatigue
  • standard measure

  • individually permissioned
  • challenges associated
  • myalgic encephalomyelitis
  • asthma symptoms
  • traditional sources


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