The provision of patient-centered care requires a health care environment that fosters engagement between patients and their health care team. One way to encourage patient-centered care is to ...incorporate patient-reported outcomes into clinical settings. Collecting these outcomes in routine care ensures that important information only the patient can provide is captured. This provides insights into patients' experiences of symptoms, quality of life, and functioning; values and preferences; and goals for health care. Previously embraced in the research realm, patient-reported outcomes have started to play a role in successful shared decision making, which can enhance the safe and effective delivery of health care. We examine the opportunities for using patient-reported outcomes to enhance care delivery and outcomes as health care information needs and technology platforms change. We highlight emerging practices in which patient-reported outcomes provide value to patients and clinicians and improve care delivery. Finally, we examine present and future challenges to maximizing the use of patient-reported outcomes in the clinic.
Introduction
New informatics tools can transform evidence-based information to
individualized
predictive reports to serve shared decisions in clinic. We developed a web-based system to collect ...patient-reported outcomes (PROs) and medical risk factors and to compare responses to national registry data. The system generates predicted outcomes for individual patients and a report for use in clinic to support decisions. We present the report development, presentation, and early experience implementing this PRO-based, shared decision report for knee and hip arthritis patients seeking orthopedic evaluation.
Methods
Iterative patient and clinician interviews defined report content and visual display. The web-system supports: (a) collection of PROs and risk data at home or in office, (b) automated statistical processing of responses compared to national data, (c)
individualized
estimates of likely pain relief and functional gain if surgery is elected, and (d) graphical reports to support shared decisions. The system was implemented at 12 sites with 26 surgeons in an ongoing cluster randomized trial.
Results
Clinicians and patients recommended that pain and function as well as clinical risk factors (e.g., BMI, smoking) be presented to frame the discussion. Color and graphics support patient understanding. To date, 7891 patients completed the assessment before the visit and 56% consented to study participation. Reports were generated for 98% of patients and 68% of patients recalled reviewing the report with their surgeon.
Conclusions
Informatics solutions can generate timely, tailored office reports including PROs and predictive analytics. Patients successfully complete the pre-visit PRO assessments and clinicians and patients value the report to support shared surgical decisions.
Background
Patient-reported outcome measures (PROMs) are increasingly being used as an assessment and monitoring tool in clinical practice. However, patient adherence to PROMs completions are ...typically not well documented or explained in published studies and reports. Through a collaboration between the International Society for Quality-of-Life Research (ISOQOL) Patient Engagement and QOL in Clinical Practice Special Interest Groups (SIGs) case studies were collated as a platform to explore how adherence can be evaluated and understood. Case studies were drawn from across a range of clinically and methodologically diverse PROMs activities.
Results
The case studies identified that the influences on PROMs adherence vary. Key drivers include PROMs administeration methods within a service and wider system, patient capacity to engage and clinician engagement with PROMs information. It was identified that it is important to evaluate PROMs integration and adherence from multiple perspectives.
Conclusion
PROM completion rates are an important indicator of patient adherence. Future research prioritizing an understanding of PROMs completion rates by patients is needed.
Purpose
Supporting the capture and use of patient-reported outcomes (PROs) at the point-of-care enriches information about important clinical and quality of life outcomes. Yet the ability to scale ...PROs across healthcare systems has been limited by knowledge gaps around how to manage the diversity of PRO uses and leverage health information technology. In this study, we report learnings and practice insights from UW Medicine’s practice transformation efforts to incorporate patient voice into multiple areas of care.
Methods
Using a participatory, action research approach, we engaged with UW Medicine clinical and administrative stakeholders experienced with PRO implementation to inventory PRO implementations across the health system, characterize common clinical uses for PROs, and develop recommendations for system-wide governance and implementation of PROs.
Results
We identified a wide breadth of PRO implementations (
n
= 14) in practice and found that nearly half (47%) of employed PRO measures captured shared clinical domains (e.g., depression). We developed three vignettes (use cases) that illustrate how users interact with PROs, characterize common ways PRO implementations support clinical care across the health system (1)
Preventive care,
(2)
Chronic/Specialty care
, and (3)
Surgical/Interventional care)
, and elucidate opportunities to enhance efficient PRO implementations through system-level standards and governance.
Conclusions
Practice transformation efforts increasingly require integration of the patient voice into clinical care, often through the use of PROs. Learnings from our work highlight the importance of proactively considering how PROs will be used across the layers of healthcare organizations to optimize the design and governance of PROs.
Purpose
We conducted semi-structured qualitative interviews with surgeons to assess their goals for incorporating a patient-reported outcome measure (PROM)-based shared decision report into ...discussions around surgical and non-surgical treatment options for osteoarthritis of the knee and hip.
Methods
Surgeons actively enrolling patients into a study incorporating a standardized PROM-based shared decision report were invited to participate in a semi-structured interview lasting 30 min. Open-ended questions explored how the surgeon used report content, features that were helpful, confusing, or could be improved, and how use of the report fit into the surgeon’s workflow. We used a conventional content analysis approach.
Results
Of the 16 eligible surgeons, 11 agreed to participate with 9 completing the interview and 2 withdrawing due to work demands. We identified 8 themes related to PROM-based report use: Acceptability, Patient Characteristics, Communication Goals, Useful Content, Not Useful Content, Challenges, Training Needs, and Recommended Improvements. Additional sub-themes emerged for Communication Goals (7) and Challenges (8). All surgeons shared positive feedback about using the report as part of clinical care. Whereas surgeons described the use of the report to achieve different goals, the most common uses related to setting expectations for post-surgical outcomes (89%) and educating patients (100%).
Conclusion
Surgeons tailor their use of a PROM-based report with individual patients to achieve a range of aims. This study suggests multiple opportunities to further our understanding of the ways PROMs can be used in clinical practice. The way PROM information is visually displayed and multi-component reports are assembled can facilitate diverse aims.
Lung cancer screening, despite its proven mortality benefit, remains vastly underutilized. Previous studies examined knowledge, attitudes, and beliefs to better understand the reasons underlying the ...low screening rates. These investigations may have limited generalizability because of traditional participant recruitment strategies and examining only subpopulations eligible for screening. The current study used crowdsourcing to recruit a broader population to assess these factors in a potentially more general population.
A 31-item survey was developed to assess knowledge, attitudes, and beliefs regarding screening among individuals considered high risk for lung cancer by the United States Preventive Services Task Force. Amazon’s crowdsourcing platform (Mechanical Turk) was used to recruit subjects.
Among the 240 respondents who qualified for the study, 106 (44%) reported knowledge of a screening test for lung cancer. However, only 36 (35%) correctly identified low-dose CT scanning as the appropriate test. A total of 222 respondents (93%) reported believing that early detection of lung cancer has the potential to save lives, and 165 (69%) were willing to undergo lung cancer screening if it was recommended by their physician. Multivariable regression analysis found that knowledge of lung cancer screening, smoking status, chronic pulmonary disease, and belief in the efficacy of early detection of lung cancer were associated with willingness to screen.
Although a minority of individuals at high risk for lung cancer are aware of screening, the majority believe that early detection saves lives and would pursue screening if recommended by their primary care physician. Health systems may increase screening rates by improving patient and physician awareness of lung cancer screening.
ObjectiveThe objective of this study was to explore the outcomes of research engagement (patient engagement, PE) in the context of qualitative research.DesignWe observed engagement in two groups ...comprised of patients, clinicians and researchers tasked with conducting a qualitative preference exploration project in inflammatory bowel disease. One group was led by a patient research partner (PLG, partner led group) and the other by an academic researcher (RLG, researcher led group). A semistructured guide and a set of critical outcomes of research engagement were used as a framework to ground our analysis.SettingThe study was conducted online.ParticipantsPatient research partners (n=5), researchers (n=5) and clinicians (n=4) participated in this study.Main outcome measuresTranscripts of meetings, descriptive and reflective observation data of engagement during meetings and email correspondence between group members were analysed to identify the outcomes of PE.ResultsBoth projects were patient-centred, collaborative, meaningful, rigorous, adaptable, ethical, legitimate, understandable, feasible, timely and sustainable. Patient research partners (PRPs) in both groups wore dual hats as patients and researchers and influenced project decisions wearing both hats. They took on advisory and operational roles. Collaboration seemed easier in the PLG than in the RLG. The RLG PRPs spent more time than their counterparts in the PLG sharing their experience with biologics and helping their group identify a meaningful project question. A formal literature review informed the design, project materials and analysis in the RLG, while the formal review informed the project materials and analysis in the PLG. A PRP in the RLG and the PLG lead leveraged personal connections to facilitate recruitment. The outcomes of both projects were meaningful to all members of the groups.ConclusionsOur findings show that engagement of PRPs in research has a positive influence on the project design and delivery in the context of qualitative research in both the patient-led and researcher-led group.
•Patient engagement in research can be improved by providing dedicated training.•Patients benefit from and gain confidence from training prior to research work.•Proper engagement in research also ...requires facilitation of the patient-research relationship.•This patient engagement framework can be extrapolated to other urologic malignancies.
The Bladder Cancer Advocacy Network's (BCAN) Patient Survey Network established a diverse bladder cancer patient community who contribute to the prioritization of bladder cancer research topics through surveys and summits. This study describes our experience establishing an online learning program to train this population in research methods specific to bladder cancer and to subsequently engage patients in various stages of bladder cancer research.
We created online learning modules that addressed scientific concepts related to bladder cancer, creating the patient empowerment through engagement in research (PEER) program. Bladder cancer patients and caregivers who completed the program were invited to participate in the annual BCAN Bladder Cancer Summit to develop research study concepts. We then facilitated the promoting implementation of patient engagement in research conference to identify methods of connecting patient research advocates with research teams and find ways to disseminate patient-centered outcomes research.
After completing the online training, 2 cohorts of PEER trainees attended the 2017 (n = 19) and 2018 (n = 18) Bladder Cancer Summits. These research advocates contributed to the prioritization of bladder cancer research topics that appeared on the Patient Survey Network and developed 3 patient-centered research studies. BCAN research advocates participated in promoting implementation of patient engagement the following year (n = 57) and identified these priorities: (1) the need to expand the patient research advocate cohort, (2) the need to streamline links between patient research advocates and research teams, and (3) approaches for patient-centered dissemination of research results.
The PEER program provides an exemplar for disease-specific research training for fostering patient engagement in research. This framework can be extrapolated to facilitate patient engagement in the research of other disease processes and malignancies.
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