Helpful Resources

User’s Guide for Patient-Reported Outcomes in the Electronic Health Record was released by PCORI in May 2017. It provides a thoughtful evaluation of various approaches for integrating PROs into EHRs.

View the guide and slide presentations here>>

The International Society of Quality of Life Research (ISOQOL) offers an on-demand webinar ($), “Patient Engagement with PRO Completion in Clinical Practice: Challenges and Solutions.”

Learn more>>

Recommendations from Successful Implementations

A growing number of publications identify enablers and barriers for implementing patient-reported outcome measures for patient care.

Enablers and Barriers

Using the Theoretical Domain Framework, a research team at McGill University identified both enablers and barriers for healthcare providers to use patient-reported outcome scores in clinical care for patients with low back pain. Learn more>>

Enablers

  • Knowledge (e.g., objective in collecting PROs)
  • Skills (e.g., how to interpret a PRO score)
  • Professional role (e.g., perceive responsibility for using PRO in care)
  • Optimism (e.g., expect PROs will improve patients’ outcomes)
  • Beliefs about consequences (e.g., believe in benefits of using PROs)
  • Reinforcement (e.g., having improved patient outcomes after using PROs reinforces use of PROs
  • Intentions (e.g., plan to use PROs in clinical care delivery)

Barriers

  • Skills (e.g., need new skills to use PROs)
  • Professional role (e.g., unsure of role with using PROs)
  • Beliefs about consequences (e.g., don’t need PROs to achieve improved outcomes)
  • Goals (e.g., PROs are not more important than other sources of information)
  • Decision processes (e.g., unclear how to use PROs in treatment decisions)
  • Environmental context and resources (e.g., lack of time)
  • Social influences (e.g., don’t consult with others on need to use PROs)
  • Behavioral regulation (e.g., don’t assess patients’ motivation to complete PROs)

The Society of Gynecologic Oncology’s Policy, Quality, and Outcomes Taskforce identified “significant, but surmountable” challenges in integrating patient-reported outcome measures in healthcare. These include infrastructure, reporting, provider engagement, and patient engagement (Sisodia et al, 2020).

Recommendations from Successful System-wide Integrations

The Cincinnati Children’s Hospital Medical Center (CCHMC) implemented system-wide assessment with PROMIS and other PRO measures. Across clinics, their completion rate is 75%. Their experience resulted in a publication (Gerhardt et al., 2018) describing recommendations for successful implementation including identification of a physician or nurse champion, matching measures with clinical need, knowing the meaning of scores including when and how to intervene, training providers and staff, and monitoring completion rates. Further discussion by (Lavallee et al, 2018) highlighted the need for such case studies.

University of Utah Health also implemented system-wide PRO collection that includes PROMIS CATs (Biber et al 2018). Their recommendations include engaging in pre-implementation planning, creating a standardized process for implementation, having organizational and clinical leadership, and collaboration across teams.

A McGill University research team created a workshop to address barriers in using patient-reported outcome scores in care for patients with low back pain. Empirically supported behavior change techniques (e.g., modeling, rehearsal of skills, reward/incentives) were matched with identified barriers (e.g., skills to interpret PRO scores). An outline of the intervention including sample graphical reports of PRO score change over time and treatment recommendations by PRO score is available as supplementary information to their 2020 manuscript. Learn more>>

A 2019 publication provides an overview of challenges and opportunities in using patient-reported outcomes in health care delivery. Hsiao and colleagues summarized two technical expert panel meetings held in 2016 by the Agency for Healthcare Research and Quality. They identified challenges at pre-implementation (e.g., lack of a business case to collect PROs), data collection (e.g., liability and privacy concerns), and post-data collection (e.g., data display is not patient-friendly). They then identified strategies to address these challenges today (e.g., provide training on benefits of PRO collection; provide multiple data collection modalities; provide guidance on PRO score interpretation) and research opportunities (e.g., identify what PRO measures in what context provide what specific benefits; identify how PRO information can be integrated into care plans). Learn more>>

Although implemented as part of clinical research studies, Stover et al (2019) describe strategies to facilitate implementation of PROs in clinical care through use of stakeholder engagement. Specifically, clinician and patient input was used to establish thresholds for clinical action and create decision support tools for how to respond to concerning scores. Tracking and reporting the impact of those thresholds (e.g., frequency of concerning scores) was also useful in understanding the impact of PRO implementation on clinician workload and evaluate the frequency of false positives. Learn more>>

The National Quality Forum (NQF) published Patient-Reported Outcomes: Approaches and Challenges in Selection and Data Collection – An Environmental Scan in December 2019. Approaches to measure selection include psychometric soundness, person-centeredness, meaningfulness, amenability to change, and implementability. Methodological options (e.g., self-report versus proxy-report, self-administration versus interviewer administration, paper versus electronic, clinic setting versus home setting versus other settings, classical test theory versus item response theory) are also explored. Challenges include data collection burden, difficulties incorporating into the clinician workflow, difficulties incorporating data into electronic medical records, lack of clear interpretation of scores, both to patients and clinicians, and achieving stakeholder buy-in. Learn more>>

Three academic medical centers integrated PROMIS computer adaptive tests in their electronic health records and created an implementation toolkit to aid other sites (Nelson et al, 2020). Lessons learned included:

  • Allow sufficient time in the planning process to make and discuss decisions.
  • Recognize that planning is both a stepwise and an iterative process.
  • Continuously engage institutional leaders.
  • Expect to identify and overcome barriers throughout the process.

The first year of implementation of patient-reported measures in 18 sites in New South Wales, Australia was evaluated through qualitative interviews with stakeholders. Barriers included impact on workflow, patient burden, and technology limitations among others. Facilitators included information access, efficient communication, and workforce training. The authors describe the ways measures were used in expected and unexpected ways, and requirements for future implementations to realize the benefits of patient provided information (Rutherford et al, 2020).

Qualitative feedback from oncologists in an academic medical center highlighted the concerns about measure relevance, data overload, and actionability of scores among other barriers (Sandhu et al., 2020).

Across 205 clinics in a large healthcare organization, increased completion of patient-reported outcome measures was associated with training providers on PROs, routine administrative oversight, presence of a clinical champion, and payor incentives (Sisodia et al, 2020).

Additional References

Antunes B, Harding R, Higginson IJ; EUROIMPACT. (2014). Implementing patient-reported outcome measures in palliative care clinical practice: a systematic review of facilitators and barriers. Palliat Med, 28(2):158-75. doi: 10.1177/0269216313491619.

Foster, A., Croot, L., Brazier, J. et al. (2018). The facilitators and barriers to implementing patient reported outcome measures in organisations delivering health related services: a systematic review of reviews. J Patient Rep Outcomes 2, 46. https://doi.org/10.1186/s41687-018-0072-3