Practical Strategies for Co-design: The Case of Engaging Patients in Developing Patient-Facing Shared-Decision Making Materials for Lung Cancer Screening.

Co-design provides a meaningful way to engage patients in research. However, there is limited practical guidance. We used our co-design project to identify strategies for other researchers. An ethnographic case study design was used. Data included participant observation of co-design meetings, meeting minutes, analytic fieldnotes, qualitative patient interviews, and research team member self-reflections. Additionally, we got external feedback. We analyzed data iteratively. Our team included 5 patients and 6 researchers. We identified 3 strategies to include patients in co-design: (1) Deliberately build the team, from recruiting patients to specifying roles. (2) Tailor the meeting format to thoughtfully use patients' time and expertise. (3) Disrupt traditional hierarchies, to empower patients to actively participate. Researchers seeking to include patients as team members should consider: team composition and roles, leveraging meeting formats to optimize contributions and purposefully creating a culture of collaboration, so patient expertise informs the end product. Our work provides practical guidance for researchers to incorporate patient expertise in the co-design process and meaningfully involve them in their work.

"It Can't Hurt!": Why Many Patients With Limited Life Expectancy Decide to Accept Lung Cancer Screening.

PURPOSE: Lung cancer screening (LCS) has less benefit and greater potential for iatrogenic harm among people with multiple comorbidities and limited life expectancy. Yet, such individuals are more likely to undergo screening than healthier LCS-eligible people. We sought to understand how patients with marginal LCS benefit conceptualize their health and make decisions regarding LCS. METHODS: We interviewed 40 people with multimorbidity and limited life expectancy, as determined by high Care Assessment Need scores, which predict 1-year risk of hospitalization or death. Patients were recruited from 6 Veterans Health Administration facilities after discussing LCS with their clinician. We conducted a thematic analysis using constant comparison to explore factors that influence LCS decision making. RESULTS: Patients commonly held positive beliefs about screening and perceived LCS to be noninvasive. When posed with hypothetical scenarios of limited benefit, patients emphasized the nonlongevity benefits of LCS (eg, peace of mind, planning for the future) and generally did not consider their health status or life expectancy when making decisions regarding LCS. Most patients were unaware of possible additional evaluations or treatment of screen-detected findings, but when probed further, many expressed concerns about the potential need for multiple evaluations, referrals, or invasive procedures. CONCLUSIONS: Patients in this study with multimorbidity and limited life expectancy were unaware of their greater risk of potential harm when accepting LCS. Given patient trust in clinician recommendations, it is important that clinicians engage patients with marginal LCS benefit in shared decision making, ensuring that their values of desiring more information about their health are weighed against potential harms from further evaluations.

Tackling Guideline Non-concordance: Primary Care Barriers to Incorporating Life Expectancy into Lung Cancer Screening Decision-Making-A Qualitative Study.

BACKGROUND: Primary care providers (PCPs) are often the first point of contact for discussing lung cancer screening (LCS) with patients. While guidelines recommend against screening people with limited life expectancy (LLE) who are less likely to benefit, these patients are regularly referred for LCS. OBJECTIVE: We sought to understand barriers PCPs face to incorporating life expectancy into LCS decision-making for patients who otherwise meet eligibility criteria, and how a hypothetical point-of-care tool could support patient selection. DESIGN: Qualitative study based on semi-structured telephone interviews. PARTICIPANTS: Thirty-one PCPs who refer patients for LCS, from six Veterans Health Administration facilities. APPROACH: We thematically analyzed interviews to understand how PCPs incorporated life expectancy into LCS decision-making and PCPs' receptivity to a point-of-care tool to support patient selection. Final themes were organized according to the Cabana et al. framework Why Don't Physicians Follow Clinical Practice Guidelines, capturing the influence of clinician knowledge, attitudes, and behavior on LCS appropriateness determinations. KEY RESULTS: PCP referrals to LCS for patients with LLE were influenced by limited knowledge of the life expectancy threshold at which patients are less likely to benefit from LCS, discomfort estimating life expectancy, fear of missing cancer at the point of early detection, and prioritization of factors such as quality of life, patient values, clinician-patient relationship, and family support. PCPs were receptive to a decision support tool to inform and communicate LCS appropriateness decisions if easy to use and integrated into clinical workflows. CONCLUSIONS: Our study suggests knowledge gaps and attitudes may drive decisions to offer screening despite LLE, a behavior counter to guideline recommendations. Integrating a LCS decision support tool that incorporates life expectancy within the electronic medical record and existing clinical workflows may be one acceptable solution to improve guideline concordance and increase confidence in selecting high benefit patients for LCS.

Strategies for engaging patients in co-design of an intervention.

OBJECTIVE: We provide practical guidance about using co-design methods to collaborate with patients to create patient-facing interventions, which others can use when undertaking similar projects. METHODS: This is a narrative review synthesizing co-design principles and published literature with our experience working alongside five Veteran patients of the U.S. Department of Veterans Affairs in New England to co-design a portfolio of patient-facing materials to improve patient-centered care coordination. Our process took 12 weeks (April - June 2022) and was conducted entirely via video conference. RESULTS: Co-design is a participatory research method. Its principles include sharing power over the research process and products, agency for all participants, embracing a plurality of forms of knowledge, and mutual and reciprocal benefit. We describe three stages of the co-design process (preparatory work; design and development; feedback and closure), strategies and techniques we used at each stage, challenges we faced, and considerations for addressing them. CONCLUSION: Co-designing patient-facing interventions blends different forms of knowledge to produce practical, contextually specific interventions with ownership by the people who will use them. PRACTICE IMPLICATIONS: Co-design is a feasible methodology for most health services research teams whose goal is to intensify patient engagement in research.

Creating Whole Person Health Care Systems: Understanding Employee Perceptions of VAs Whole Health Cultural Transformation.

Objective: Whole person health care, like that being implemented in the U.S. Veterans Health Administration (VHA), involves person-centered approaches that address what matters most to patients to achieve well-being beyond the biomedical absence of disease. As whole health (WH) approaches expand, their integration into clinical practice is predicated on health care employees reconceptualizing practice beyond find-it-fix-it medicine and embracing WH as a new philosophy of care. This study examined employee perspectives of WH and their integration of this approach into care. Design: We conducted a survey with responses from 1073 clinical and 800 nonclinical employees at 5 VHA WH Flagship sites about their perceptions and use of a WH approach. We used descriptive statistics to examine employees' support for WH and conducted thematic analysis to qualitatively explore their perceptions about this approach from free-text comments supplied by 475 respondents. Results: On structured survey items, employees largely agreed that WH was a valuable approach but were relatively less likely to have incorporated it into practice or report support within their organization for WH. Qualitative comments revealed varying conceptualizations of WH. While some respondents understood that WH represented a philosophical shift in care, many characterized WH narrowly as services. These conceptualizations contributed to lower perceived relevance, skepticism, and misgivings that WH diverted needed resources away from existing clinical services. Organizational context including leadership messaging, siloed structures, and limited educational opportunities reinforced these perceptions. Conclusions: Successfully transforming the culture of care requires a shift in mindset among employees and leadership alike. Employees' depictions didn't always reflect WH as a person-centered approach designed to engage patients to enhance their health and well-being. Without consistent leadership messaging and accessible training, opportunities to expand understandings of WH are likely to be missed. To promote WH transformation, additional attention is needed for employees to embrace this approach to care.

Proactively tailoring implementation: the case of shared decision-making for lung cancer screening across the VA New England Healthcare Network.

BACKGROUND: Shared Decision-Making to discuss how the benefits and harms of lung cancer screening align with patient values is required by the US Centers for Medicare and Medicaid and recommended by multiple organizations. Barriers at organizational, clinician, clinical encounter, and patient levels prevent SDM from meeting quality standards in routine practice. We developed an implementation plan, using the socio-ecological model, for Shared Decision-Making for lung cancer screening for the Department of Veterans Affairs (VA) New England Healthcare System. Because understanding the local context is critical to implementation success, we sought to proactively tailor our original implementation plan, to address barriers to achieving guideline-concordant lung cancer screening. METHODS: We conducted a formative evaluation using an ethnographic approach to proactively identify barriers to Shared Decision-Making and tailor our implementation plan. Data consisted of qualitative interviews with leadership and clinicians from seven VA New England medical centers, regional meeting notes, and Shared Decision-Making scripts and documents used by providers. Tailoring was guided by the Framework for Reporting Adaptations and Modifications to Evidence-based Implementation Strategies (FRAME-IS). RESULTS: We tailored the original implementation plan to address barriers we identified at the organizational, clinician, clinical encounter, and patient levels. Overall, we removed two implementation strategies, added five strategies, and modified the content of two strategies. For example, at the clinician level, we learned that past personal and clinical experiences predisposed clinicians to focus on the benefits of lung cancer screening. To address this barrier, we modified the content of our original implementation strategy Make Training Dynamic to prompt providers to self-reflect about their screening beliefs and values, encouraging them to discuss both the benefits and potential harms of lung cancer screening. CONCLUSIONS: Formative evaluations can be used to proactively tailor implementation strategies to fit local contexts. We tailored our implementation plan to address unique barriers we identified, with the goal of improving implementation success. The FRAME-IS aided our team in thoughtfully addressing and modifying our original implementation plan. Others seeking to maximize the effectiveness of complex interventions may consider using a similar approach.

'It Makes You Sit Back and Think Where You Wanna Go': Veteran experiences in virtual whole health peer-led groups.

BACKGROUND: The Veterans Health Administration (VHA) is building a Whole Health system of care that aspires to empower and equip each Veteran to pursue a personally meaningful vision of health and well-being. As part of this effort, VHA has developed Taking Charge of My Life and Health (TCMLH), a peer-led, group-based programme that seeks to support Veterans in setting and pursuing health and well-being goals. Prior research showed TCMLH groups to positively impact Veteran outcomes; yet, little is known about Veterans' own experiences and perspectives. METHODS: We completed semi-structured telephone interviews with 15 Veterans across 8 sites who had participated in TCMLH groups offered by the VHA in the virtual format between Summer 2020 and Fall 2021. Inductive thematic analysis was applied to interview transcripts to generate themes. FINDINGS: We identified five themes regarding Veterans' experiences with TCMLH: (1) navigating the virtual format; (2) internalizing the value of health engagement; (3) making healthy lifestyle changes; (4) forging social connections; and (5) taking on a more active role in healthcare. CONCLUSION: Veterans perceived virtual TCMLH groups as meaningful and beneficial, yet also highlighted several challenges. Their perspectives speak to the need to supplement time-limited programmes like TCMLH with ongoing, community-based support. Virtual group-based well-being programmes are a promising innovation. Other healthcare systems may draw on VHA's experience while tailoring format and content to the needs of their patient populations. PATIENT OR PUBLIC CONTRIBUTION: Veterans were involved as evaluation participants. A Veteran consultant, who is a coauthor on this paper, was engaged through the conceptualization of the evaluation, development of data collection materials (interview guide) and writing.

Stakeholder Research Priorities to Promote Implementation of Shared Decision-Making for Lung Cancer Screening: An American Thoracic Society and Veterans Affairs Health Services Research and Development Statement.

Rationale: Shared decision-making (SDM) for lung cancer screening (LCS) is recommended in guidelines and required by Medicare, yet it is seldom achieved in practice. The best approach for implementing SDM for LCS remains unknown, and the 2021 U.S. Preventive Services Task Force calls for implementation research to increase uptake of SDM for LCS. Objectives: To develop a stakeholder-prioritized research agenda and recommended outcomes to advance implementation of SDM for LCS. Methods: The American Thoracic Society and VA Health Services Research and Development Service convened a multistakeholder committee with expertise in SDM, LCS, patient-centered care, and implementation science. During a virtual State of the Art conference, we reviewed evidence and identified research questions to address barriers to implementing SDM for LCS, as well as outcome constructs, which were refined by writing group members. Our committee (n = 34) then ranked research questions and SDM effectiveness outcomes by perceived importance in an online survey. Results: We present our committee's consensus on three topics important to implementing SDM for LCS: 1) foundational principles for the best practice of SDM for LCS; 2) stakeholder rankings of 22 implementation research questions; and 3) recommended outcomes, including Proctor's implementation outcomes and stakeholder rankings of SDM effectiveness outcomes for hybrid implementation-effectiveness studies. Our committee ranked questions that apply innovative implementation approaches to relieve primary care providers of the sole responsibility of SDM for LCS as highest priority. We rated effectiveness constructs that capture the patient experience of SDM as most important. Conclusions: This statement offers a stakeholder-prioritized research agenda and outcomes to advance implementation of SDM for LCS.

Evaluating the Impacts of Patient Engagement on Health Services Research Teams: Lessons from the Veteran Consulting Network.

BACKGROUND: Despite increasing commitment to patient engagement in research, evaluation of the impact of these efforts on research processes, products, and teams is limited. OBJECTIVE: To explore the impacts of engaging patients as consultants to research studies by examining the experiences, impacts, and lessons learned from a program facilitating patient engagement at a Veterans Health Administration research center. DESIGN: We developed a logic model to articulate the activities being implemented to support patient engagement and their anticipated outcomes. Then, we conducted qualitative, semi-structured interviews with participants in the local Veteran Consulting Network to qualitatively explore these outcomes. PARTICIPANTS: Twelve researchers and eleven Veteran patients with experience working on at least one grant or funded study. APPROACH: Interview transcripts were inductively coded using a consensus-based approach. Findings were synthesized using framework analysis and mapped back onto our logic model of expected patient engagement impacts. KEY RESULTS: Patient engagement improved the perceived quality and relevance of research studies as patient consultants challenged researchers' assumptions about patient populations and clinical contexts and gave feedback that helped improve the feasibility of proposed grants, readability of study materials, comprehensiveness of study assessments, and cultural sensitivity and relevance of interventions. Patient engagement also had personal benefits to researchers and patients. Researchers reported improved communication skills and higher job satisfaction. Patients reported a sense of purpose and satisfaction from their work with greater awareness of and appreciation for research. CONCLUSIONS: Engaging patients in research can have multiple benefits to the people and work involved. Our evaluation process can serve as a template for other organizations to plan for and assess the impact of their own patient engagement programs. Creating logic models and updating them based on feedback from program users make engagement goals explicit, help verify expected mechanisms to achieve impact, and facilitate organizational learning.

Lessons Learned From VHA's Rapid Implementation of Virtual Whole Health Peer-Led Groups During the COVID-19 Pandemic: Staff Perspectives.

BACKGROUND: Committed to implementing a person-centered, holistic (Whole Health) system of care, the Veterans Health Administration (VHA) developed a peer-led, group-based, multi-session "Taking Charge of My Life and Health" (TCMLH) program wherein Veterans reflect on values, set health and well-being-related goals, and provide mutual support. Prior work has demonstrated the positive impact of these groups. After face-to-face TCMLH groups were disrupted by the COVID-19 pandemic, VHA facilities rapidly implemented virtual (video-based) TCMLH groups. OBJECTIVE: We sought to understand staff perspectives on the feasibility, challenges, and advantages of conducting TCMLH groups virtually. METHODS: We completed semi-structured telephone interviews with 35 staff members involved in the implementation of virtual TCMLH groups across 12 VHA facilities and conducted rapid qualitative analysis of the interview transcripts. RESULTS: Holding TCMLH groups virtually was viewed as feasible. Factors that promoted the implementation included use of standardized technology platforms amenable to delivery of group-based curriculum, availability of technical support, and adjustments in facilitator delivery style. The key drawbacks of the virtual format included difficulty maintaining engagement and barriers to relationship-building among participants. The perceived advantages of the virtual format included the positive influence of being in the home environment on Veterans' reflection, motivation, and self-disclosure, the greater convenience and accessibility of the virtual format, and the virtual group's role as an antidote to isolation during the COVID-19 pandemic. CONCLUSION: Faced with the disruption caused by the COVID-19 pandemic, VHA pivoted by rapidly implementing virtual TCMLH groups. Staff members involved in implementation noted that delivering TCMLH virtually was feasible and highlighted both challenges and advantages of the virtual format. A virtual group-based program in which participants set and pursue personally meaningful goals related to health and well-being in a supportive environment of their peers is a promising innovation that can be replicated in other health systems.

Implementing Shared Decision-Making for Lung Cancer Screening across a Veterans Health Administration Hospital Network: A Hybrid Effectiveness-Implementation Study Protocol.

Shared decision-making (SDM) for lung cancer screening (LCS) is recommended by multiple organizations, reflecting a larger movement toward patient-centered care. Yet SDM for LCS does not routinely occur owing to barriers at multiple levels. Moreover, how best to implement SDM into routine clinical practice remains unknown. There is a need for a novel approach to overcome multilevel barriers and ensure high-quality SDM for LCS is integrated into routine practice. We present the protocol for our U.S. Department of Veterans Affairs (VA)-funded study. Our protocol is designed to implement and evaluate a multilevel, tailored approach to SDM for LCS in routine clinical practice within the VA New England Health Care Network, comprising eight medical centers. In this prospective, pragmatic hybrid implementation-effectiveness study, we will first conduct a formative evaluation of barriers to SDM for LCS at each level of the socioecological model, which will inform our tailored implementation plan. We will then sequentially introduce components of our tailored, multilevel approach to implementing SDM for LCS across VA New England. Finally, using mixed methods, we will evaluate the implementation and its impact on effectiveness (primary outcome, defined as patient-centeredness of SDM), as well as implementation outcomes informed by the RE-AIM implementation science framework (i.e., reach to patients, adoption by providers, implementation fidelity). Tailored implementation will address identified challenges to achieving policy recommendations for SDM for LCS in VA New England, inform nationwide implementation of SDM for LCS, and address stakeholder interests in promoting more patient-centered interactions across the VA.