Patient-Centered Research: The Author Replies

Patient-Centered Outcomes Research: Early Evidence From A Burgeoning Field.

Improved health outcomes and lower costs have been reported with pharmacist-led patient-centered approaches to medication optimization in older adults, but heterogeneity in studies has complicated assessments of how well these approaches have worked. Among the challenges in advancing care from patient-centered research is uncertainty in how well research questions have matched patients' care needs. One strategy is to engage patients, ideally as equal partners, in the preparation, execution, and dissemination of research. The objective of this study was to survey older adults, caregivers, researchers, and pharmacists to better understand the needs for training on patient-centered outcomes research (PCOR) focusing on medication optimization in older adults. A 12-member Community Council was formed to guide the project and to build capacity for engaging older adults, caregivers, researchers, and pharmacists in medication-related patient-centered outcomes research. The Community Council consisted of individuals from three regions: Hawaii, Midwest, and Mid-Atlantic. The Council created a needs assessment survey that was deployed electronically. There were 93 Elder Care Network participants who were asked to complete the needs assessment survey and 74 surveys were received resulting in a response rate of 80% but only 68 were completed and included in the analysis. Explaining what PCOR is, sharing examples of how members of the community can participate in research, discussing how community members can work with research teams to answer questions, and helping respondents understand how research can affect them were the top responses. Work of the Elder Care Medicine Network illustrates the importance of understanding the ongoing needs for education that are customized to meet the needs and preferences reported by older adults, caregivers, compared to clinicians and researchers.

Long Covid, characterised by persistent symptoms following the coronavirus disease 2019 (COVID-19) infection, significantly impacts the quality of life. Engaging patients in research and care through participatory methods can enhance a shared understanding of illness and improve the relevance of research. We define Patient Experts (PEs) as persons (including patients, caregivers and providers) who have completed a series of training sessions on team building, research methods and communication at the Patient Engagement Studio, University of South Carolina (PES USC). This study explores the use of photovoice to document the experiences and capacity-building journey of Long Covid PEs within PES USC. The study employed photovoice within the COVID-19-Focused Virtual Patient Engagement Studio (CoVIP Studio). PEs submitted photographs and narratives at two distinct time points. Among the 18 PEs who participated in the project, 47 photos were collected during the training, and 31 were collected at the project's conclusion. Thematic analysis was conducted to capture changes in patient perspectives and engagement. Initial themes identified were "Hope through Community," "Collaborative Education and Research" and "Strength and Endurance." By the project's end, themes had evolved to "Working as a Team to Share and Acquire Knowledge," "Enhanced Confidence in the Future of Care" and "Perseverance and Progress." These findings highlight the transformative impact of patient engagement and the utility of photovoice in documenting longitudinal shifts in patient perspectives. Photovoice effectively engaged Long Covid patients and captured their evolving roles and perceptions as PEs. The study underscores the value of patient-led participatory methods in enhancing the relevance and applicability of clinical research, advocating for their broader adoption to improve patient-centred care and research outcomes. A CoVIP Studio stakeholder advisory board (CoVIP SAB) guided the co-development and implementation of this project. The CoVIP SAB comprised nine members with complementary skills and expertise, including three patients, three clinicians who provide care to patients with COVID-19 and three researchers with expertise in patient-centred research, COVID-19 and/or patient engagement and collaborate with patients as co-investigators. The board contributed to project design and implementation, refining photovoice prompts and shaping dissemination strategies. In addition, one PE who actively participated in all phases of the project contributed to the writing of this paper and is a coauthor. All project activities involved patients and/or caregivers with lived experience of Long Covid.

Chapter 5 - The Patient-Centered Outcomes Research Institute: Current Approach to Funding Clinical Research and Future Directions

Practice-based research networks (PBRNs) perform clinically relevant research designed for immediate translation to patient care. Research questions developed with patients and parents are more likely to be relevant to stakeholders. This case study developed priority areas for patient-centered outcomes research in pediatric health within the context of the Colorado Children's Outcomes Network, a statewide pediatric PBRN, and in collaboration with stakeholders. We undertook a mixed-methods, community-engaged process to understand and develop a research agenda for our pediatric PBRN. With a stakeholder-engaged research team, we conducted 52 stakeholder interviews and 1 focus group (n = 9) addressing topics including child health issues, personal health care experiences, community health, and the health care system. Transcripts were coded and analyzed by researchers and parent advisors. We conducted a Web-based survey of PBRN stakeholders (n = 75) to rate priority issues identified in qualitative findings. Finally, we facilitated a community-engaged mixed-methods interpretation and issue selection process with our Network Advisory Board to identify issues of highest importance for Colorado Children's Outcomes Network. Six topic areas of importance to pediatric health stakeholders emerged from qualitative work. Participating stakeholders used rating surveys to rank these 6 topics. Pediatric mental health coordination and communication/integration with primary care was ranked as the most important and highest research priority. The Network Advisory Board additionally identified immunization uptake and transition from pediatric to adult health care as research priority areas. This pediatric PBRN identified numerous research priorities in pediatric health and selected 3 for immediate research action. PBRNs can use community-engaged, mixed-methods research approaches to set research priorities and develop patient-centered pediatric research agendas.

The National Psoriasis Foundation (NPF) is developing an agenda for patient-centered research to help patients and their caregivers make more informed health care decisions by engaging psoriasis patients in prioritizing comparative effectiveness research (CER) topics. The NPF has created a novel patient-centered research platform known as Citizen Pscientist (CP), allowing patients with psoriasis and psoriatic arthritis to register and contribute their health data. The CP Governance Council administered an online 23-question CER survey to the CP community and held a structured meeting on December 3, 2016, with patients and researchers to review CER survey results and discuss patient-centered research priorities. Of the 2,945 patients surveyed, 792 patients responded. Three CER topics were deemed to be of high priority for the research agenda: 1) Treat-to-target therapy for psoriasis, 2) Psoriatic arthritis screening questionnaires for early detection and treatment of psoriatic arthritis, and 3) Comparative effectiveness of home-based phototherapy for psoriasis.

BackgroundEmerging and epidemic infectious disease outbreaks are a significant public health problem and global health security threat. As an outbreak begins, epidemiological investigations and traditional public health responses are generally mounted very quickly. However, patient-centred research is usually not prioritised when planning and enacting the response. Instead, the clinical research response occurs subsequent to and separate from the public health response, and is inadequate for evidence-based decision-making at the bedside or in the offices of public health policymakers.DiscussionThe deficiencies of the clinical research response to severe acute respiratory syndrome, pandemic influenza, Middle East respiratory syndrome coronavirus and Ebola virus demonstrate that current research models do not adequately inform and improve the quality of clinical care or public health response. Three suggestions for improvements are made. First, integrate the data and sample collection needs for clinical and public health decision-making within a unified framework, combined with a risk-based, rather than a discipline-based, approach to ethical review and consent. Second, develop clinical study methods and tools that are specifically designed to meet the epidemiological and contextual challenges of emerging and epidemic infectious diseases. Third, invest in investigator-led clinical research networks that are primed and incentivised to respond to outbreak infections, and which can call on the support and resources of a central centre of excellence.ConclusionsIt is crucial that the field of epidemic science matures to place patients at the heart of the response. This can only be achieved when patient-centred research is integrated in the outbreak response from day one and practical steps are taken to reduce the barriers to the generation of reliable and useful evidence.

BackgroundThere are good reasons to train clinician researchers, including a lack of translational and patient centered research, a decline in physicians choosing academic careers, the need for physicians who are able to critically appraise research, and accreditation requirements. However, why are we insisting that residents engage in original clinical research?DiscussionThis paper is structured around three questions: 1) Is mandating original research the answer? 2) What ought to be the central purpose of research training? And 3) What are the alternatives to original clinical research? The successful development of clinician-scientists involves many more factors than resident research training. While invoking social accountability and public welfare, we argue for considering the opportunity cost of resident research training. We question the focus on original resident research and challenge medical educators to encourage research training aimed steadfastly at public good in the local setting. Finally, we offer preliminary suggestions for how to move forward.ConclusionsWe conclude that medical educators should critically re-think our programs to develop resident researchers. If it is worthwhile to require original research projects during residency, then we must consider the priorities of local settings to best serve the public interest.

IntroductionTo design and implement a novel cloud-based digital platform that allows psoriatic patients and researchers to engage in the research process.MethodsCitizen Pscientist (CP) was created by the National Psoriasis Foundation (NPF) to support and educate the global psoriatic disease community, where patients and researchers have the ability to analyze data. Psoriatic patients were invited to enroll in CP and contribute health data to a cloud database by responding to a 59-question online survey. They were then invited to perform their own analyses of the data using built-in visualization tools allowing for the creation of “discovery charts.” These charts were posted on the CP website allowing for further discussion.ResultsAs of May 2017, 3534 patients have enrolled in CP and have collectively contributed over 200,000 data points on their health status. Patients posted 70 discovery charts, generating 209 discussion comments.ConclusionWith the growing influence of the internet and technology in society, medical research can be enhanced by crowdsourcing and online patient portals. Patient discovery charts focused on the topics of psoriatic disease demographics, clinical features, environmental triggers, and quality of life. Patients noted that the CP platform adds to their well-being and allows them to express what research questions matter most to them in a direct and quantifiable way. The implementation of CP is a successful and novel method of allowing patients to engage in research. Thus, CP is an important tool to promote patient-centered psoriatic disease research.

Engaging community collaborators in research is crucial for enhancing health care outcomes, especially for cerebral palsy (CP). However, effective multi-collaborator involvement poses challenges. This study used an occupation-based approach to engage community collaborators in developing a CP Task Force to initiate patient-centered comparative clinical effectiveness research and evaluated member perspectives on roles and experiences. A repeated cross-sectional design was employed, with 18 CP Task Force members completing 39 surveys. Engagement activities focused on social participation, leisure, play, education, and work. Surveys assessed team culture, trust, and role satisfaction. Descriptive statistics analyzed survey data, while thematic analysis summarized qualitative responses. Participants reported high satisfaction and engagement. Key themes included inclusivity, effective communication, accessibility, and expanded engagement. Occupation-based engagement can enhance collaboration, build rapport, and create a shared sense of purpose among multi-collaborators when establishing a CP Task Force to support patient-centered comparative clinical effectiveness research.

In recent years, the healthcare community has recognized that our current clinical research system, for all of the great advances it produces, is in need of improvement. Research—especially large clinical trials—is currently not only expensive, but also slow in both the setup and conduct of a study. Expanding the nation’s capacity to conduct clinical studies quickly and economically requires new infrastructure that takes advantage of data gathered in clinics, hospitals, and other sites where patients receive care—as well as patient registries. PCORnet, the National Patient-Centered Clinical Research Network, works with patients, clinicians, health systems leaders, informaticians, and clinical researchers to connect 29 individual networks of patients and healthcare systems into a large interoperable, secure national network that turns millions of patient encounters into valuable data points. This chapter includes a case study of the Patient-centered SCAlable National Network for Effectiveness Research (pSCANNER), a stakeholder-governed, distributed clinical data research network that is part of PCORnet. pSCANNER leverages data from its clinical sites—over 30 million patients in all 50 states—for comparative effectiveness and patient-centered outcomes research to improve care of conditions such as obesity, heart failure, and Kawasaki disease. Implications for nursing research and practice are also offered.

Single-patient (n-of-1) trials: a pragmatic clinical decision methodology for patient-centered comparative effectiveness research

There Is Nothing So Stable as Change

The editorialist discusses the ethical and regulatory recommendations presented by the Patient-Centered Outcomes Research Institute and explains why direct, continuous involvement of patients in de...

Research into the psychological impact of critical care has burgeoned over the past 20 years. This chapter outlines the major areas of psychological and rehabilitation research being conducted in critical care, as well as the gaps that remain to be filled. The authors review research areas corresponding to the early acute critical care phase, the in-hospital rehabilitation phase, and the post-hospital recovery period. The focus is on patient-centered research. The authors also review how clinicians can set themselves up to conduct psychological research, what kind of teams they need to assemble, and the challenges they could face working in critical care environments. The authors draw on their own experiences conducting linked, critical care psychology research studies, and compare this to methods used by other researchers.