1. Incorporating Patient-Reported Outcomes Into Health Care To Engage Patients And Enhance Care
Danielle Lavallee, PharmD, PhD
Department of Surgery
University of Washington Medical Center

2. Educational Objectives
At the conclusion of this activity, participants should be able to:
Discuss efforts promoting the implementation of patient-reported outcomes (PROs) in health care
Describe ways in which PRO data support patient engagement in health care
Discuss strategies to capture PROs in routine clinical care
Understand challenges and future opportunities for PRO implementation in health care

3. Patient-Reported Outcomes
Term
Definition
Functional status
An individual's effective performance of or ability to perform those roles, tasks, or activities that are valued (e.g. going to work, playing sports, or maintaining the house). 
Health-related quality of life (HRQOL)
Personal health status. HRQOL usually refers to aspects of our lives that are dominated or significantly influenced by our mental or physical well-being.
Quality of life (QOL) 
An evaluation of all aspects of our lives, including, for example, where we live, how we live, and how we play.  It encompasses such life factors as family circumstances, finances, housing and job satisfaction. (See also health-related quality of life).
Well-being
Subjective bodily and emotional states; how an individual feels; a state of mind distinct from functioning that pertains to behaviors and activities.
Higgins JPT, Green S. Cochrane Handbook for Systematic Reviews. The Cochrane Collaboration. Version March Available at:

4. Patient-Reported Outcomes Do Not Include…
Clinician Reported Outcomes (ClinROs)
Observed reports from the physician (e.g. cure of infection, dermatologic changes)
Reports requiring clinician interpretation (e.g. lab results, radiologic reports)
Observer Reported Outcomes (ObsROs)
Assessment made by someone (i.e. teacher or caregiver) who does not have professional training related to the measure
May be used when the individual is unable to self-report (children, dementia)
PROs are different from measures we traditionally capture as part of clinical trials - Clinician Reported Outcomes (ClinROs) are most commonly assessed. This might include observed reports from the physician (e.g. cure of infection, dermatologic changes) or reports requiring clinician interpretation (e.g. lab results, radiologic reports).
An additional metric includes Observer Reported Outcomes. Such outcomes include assessments made by someone (i.e. teacher or caregiver) who does not have professional training related to the measure or might be included when the individual is unable to self-report (children, dementia).

5. Why the focus?

6. eHealth – Evolving ways to engage patients

7. How do we meaningfully capture & integrate this information into workflow and decision-making?

8. PROs Facilitate Engagement
Assess the severity of symptoms
Track the impact of treatments
Help patients and providers set priorities for office visit discussions
Inform treatment decisions
Monitor health and well-being
Connect providers to patient-generated health data
Patient-reported outcomes enhance patient engagement and shared decision making through their ability to provide unique view of patient health in a manner not captured by lab tests or clinical assessments.
CLICK: Routine capture of patient symptoms help facilitate discussions on the progression of a disease or experiences with treatments. In oncology care, collecting patient-reported symptoms through the electronic health record helped clinicians identify and discuss with patients potential adverse events related to chemotherapy modifying treatment plans as needed.
CLICK: Patient reported outcomes can provide insight on how effective treatments or lifestyle modifications are in improving health. One example from pediatric care is the Orchestra Project’s tracking tool. This tool, developed for children with inflammatory bowel disorders, allows the patient and physician to work together to determine a set of measures to track tailored to the individual. The patient and physician learn together, both from modifications for example to diet or sleep as well as changes to medical treatments.
CLICK: Capturing patient-reported pain and function outcomes over time can help inform when the next level of care is necessary. For example, tracking functional outcomes and pain overtime can help patients and clincians assess the effectiveness of physical therapy and medication treatments and determine when surgical care is necessary for knee replacement.
CLICK: PROs also allow for routine screening of general activity and health as part of wellness visits. Screening for depression, a CMS quality measure, using the patient-health questionnaire is probably the most common PRO integrated in healthcare systems.
CLICK: The most recent advance in the ability to track and report on patient- reported outcomes over time are mobile platforms and devices that give patients the control to determine which measures to track over time. This can include patient-reported measures as well as data regarding sleep, activity and diet. Patients value being able to easily collect and track information outside of the healthcare visit.

9. Challenges to Spread and Scalability
Workflow
Measurement
Technology
Design
While many promote the value PROs provide in better engaging patients in healthcare, challenges exist hampering widespread implementation.
CLICK: One of the biggest concerns and challenges increased burden on the clinic workflow. This includes increased burden to both patients and healthcare teams to ensure that data are collected and made available in a timely manner, added time required to interpret the data, and the increased duration of office visits to discuss this information in what is already viewed as a compressed amount of time.
CLICK: Measurement of patient-reported outcomes is best understood in the research setting. As these measures move into clinical practice concerns exist about how to ensure that the measures utilized and time-points assessed are relevant to individual patient care. Further, ensuring that the data can help inform and direct decision-making is critical – there is concern that scores generated may highlight problems but not link to actionable guidance for solutions.
CLICK: Technology continues its exponential rate of advancement, barriers exist for streamlining PRO implementation in clinical practice. Electronic Health Records are starting to support PRO capture but reporting capabilities and visualization, for both patients and providers are limited. Challenges also exist in the interoperability of electronic health systems limiting the ease of which the information can be shared across systems. And while technology is creating incredible new ways patients can generate and track health data it is not yet clear if or how to integrate this information into health care or existing clinical information systems.
CLICK: Finally, there has been limited focus on end users in the design and implementation of PRO capture. Efforts are needed to design processes that take into account both the patient and healthcare teams in workflow to capture and report PRO data. Health literacy, and numeracy, including the ability to interpret graphical representations of data are important to address to ensure the data reported is accessible and informative.

10. Future Focus Partnership with patients Address workflow issues
Automated PRO capture & reporting
Computer adaptive testing
Research
Translating PROs to actionable data
Patient-generated health data
Policy changes will continue to promote better access for patients to obtain their medical information to support their understanding and management of their health. I suspect payers will continue to expand expectations for reporting on data about patients experience with regards to healthcare and I have no doubt that patients will continue to innovate and challenge our thinking and practices for patient-centered care. To ensure that these changes are leveraged to transform care we feel future focus should center on the following:
CLICK: First, patients need to be partners in thinking through the challenges for implementing patient-reported outcomes in clinical practice. That includes collaborative efforts to address workflow issues described; ensuring that PROs measured add value to the visit and do not detract; and incorporating patients into the design processes to ensure reported data is informative to decision-making.
CLICK: There are a number of great research studies underway to determine how to implement PROs into clinical practice. Research conducted in this area should focus on implementation of PROs in clinical practice including how data links to actionable decisions by both patients and providers. Finally, research on the effectiveness of mobile health and patient generated health data in improving healthcare is needed including how best to integrate such platforms and data with existing health systems.

11. Thank You!
This project was supported by a grant from the Agency for Healthcare Research and Quality (AHRQ) to AcademyHealth (Grant No. U18HS022789).The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Healthcare Research and Quality.