scholarly journals What works when: mapping patient and stakeholder engagement methods along the ten-step continuum framework

2021 ◽  
Author(s):  
Hillary A Edwards ◽  
Jennifer Huang ◽  
Liz Jansky ◽  
CD Mullins
Keyword(s):  
Focus Groups ◽  
Patient Engagement ◽  
Mixed Methods Research ◽  
Evidence Based ◽  
Patient Centered ◽  
Team Members ◽  
Modified Delphi ◽  
Translation Table ◽  
What Works ◽  
Print Materials

Aim: This study provides a recommended ‘patient engagement translation table’ that identifies evidence-based methods for meaningful patient engagement along a ten-step framework for continuous engagement. Materials & methods: We used a mixed methods research design to collect data on preferred engagement methods, including an environmental scan of available literature, interviews and focus groups with patient-centered outcomes research stakeholders to match methods with research steps and a modified Delphi process with subject matter experts to create the final translation table. Results: Evidence-based engagement methods included community partnerships, focus groups, interviews, meetings, sharing print materials, social media, storytelling, surveys and including patients as research team members. Conclusion: Our recommended patient engagement translation table is designed to assist investigators in determining appropriate engagement methods for meaningful interactions with stakeholders.

Pragmatic patient engagement in designing pragmatic oncology clinical trials

2021 ◽  
Author(s):  
Bernard Bright Davies-Teye ◽  
Michelle Medeiros ◽  
Cynthia Chauhan ◽  
Claudia Rose Baquet ◽  
C Daniel Mullins
Keyword(s):  
Patient Engagement ◽  
Evidence Based ◽  
Regulatory Requirements ◽  
Patient Centered ◽  
Community Based ◽  
Scientific Rigor ◽  
Oncology Clinical Trials ◽  
Implementation And Dissemination ◽  
Practical Guidance ◽  
Increasing Demand

Oncology trials are the cornerstone of effective and safe therapeutic discoveries. However, there is increasing demand for pragmatism and patient engagement in the design, implementation and dissemination of oncology trials. Many researchers are uncertain about making trials more practical and even less knowledgeable about how to meaningfully engage patients without compromising scientific rigor to meet regulatory requirements. The present work provides practical guidance for addressing both pragmaticism and meaningful patient engagement. Applying evidence-based approaches like PRECIS-2-tool and the 10-Step Engagement Framework offer practical guidance to make future trials in oncology truly pragmatic and patient-centered. Consequently, such patient-centered trials have improved participation, faster recruitment and greater retention, and uptake of innovative technologies in community-based care.

scholarly journals Improving Clinicians’ Implementation of Guidelines to Help Women Stop Smoking in Pregnancy: Developing Evidence-Based Print and Video Materials

2021 ◽  
Vol 18 (19) ◽  
pp. 10522
Author(s):  
Jo M. Longman ◽  
Catherine Adams ◽  
Christine Paul ◽  
James McLennan ◽  
Megan E. Passey
Keyword(s):  
Behaviour Change ◽  
Mixed Methods Research ◽  
Behaviour Change Techniques ◽  
Evidence Based ◽  
Multiple Stakeholders ◽  
Smoking In Pregnancy ◽  
Stop Smoking ◽  
Print Materials ◽  
Public Health Challenge ◽  
In Pregnancy

Smoking in pregnancy remains a public health challenge. Our team developed a comprehensive intervention using the Behaviour Change Wheel to support clinicians’ implementation of guidelines on supporting women to stop smoking in pregnancy. Integral to the intervention was a suite of evidence-based video and print materials. This paper describes the rationale and process for developing these materials. Comprehensive mixed methods research was undertaken to identify the key barriers and enablers for clinicians in implementing the guidelines. This research identified which behaviours required change, and which behaviour change techniques were best suited to effecting that change. Materials were developed based on this understanding, in a collaborative process with multiple stakeholders, and their feasibility and acceptability explored in a small trial. Materials developed included leadership, clinician and client resources. There are considerable advantages to systematically and collaboratively developing materials which are integral to a behaviour-change intervention even though it is resource intensive to do so.

scholarly journals Reconciling Validity and Challenges of Patient Comfort and Understanding: Guidelines to Patient-Oriented Questionnaires

2021 ◽  
Author(s):  
Catherine Hudon ◽  
Alya Danish ◽  
Mireille Lambert ◽  
Dana Howse ◽  
Monique Cassidy ◽  
...  
Keyword(s):  
Patient Engagement ◽  
Health Research ◽  
Questionnaire Development ◽  
Governance Structure ◽  
Patient Comfort ◽  
Patient Centered ◽  
Team Members ◽  
Patient Reported ◽  
Questionnaire Research ◽  
Healthcare Innovation

Abstract Background: Patient-reported outcomes measures (PROMs) are widely recognized as important tools for achieving a patient-centered approach in health research. While PROMs are subject to several stages of validation during development, even questionnaires with robust psychometric properties may pose problems for targeted patients. Challenges can rise for reasons of clarity, understanding, comfort, or the complexity of the patient’s situation (e.g., their health needs). How can good practices in questionnaire development and validation on one hand, and challenges of accommodating patient comfort and understanding on the other hand be reconciled? Building on the experience of patient engagement in the PriCARE research program, this paper aims to propose: 1) steps to address challenges of patient comfort and understanding of the questionnaires and to reach consensus, and 2) patient-oriented guidelines for administrating the questionnaires. Methods: Based on a participatory approach and the patient engagement framework in the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, team members, including patient partners, worked together to discuss the problem, review the questionnaires, and come up with different solutions. Based on literature presenting similar processes in research projects, a working group was created to produce guidelines for administering the questionnaires. We present a step-by-step description of strategies used in PriCARE, to reconcile good research practices for using validated questionnaires and the challenges in questionnaire development related to patient comfort and understanding. Results: This paper demonstrates how patient partners were engaged in PriCARE and integrated into the program’s governance structure, the challenges they raised regarding the questionnaires, and how the challenges were addressed in a six-step approach: 1) Recognizing patient partner concerns, discussing these concerns, and reframing the challenges; 2) Detailing and sharing evidence of the validity of the questionnaires; 3) Evaluating potential solutions; 4) Searching literature for guidelines; 5) Creating guidelines; 6) Sharing and refining guidelines. Conclusion: This six-step approach demonstrates how research teams can integrate patient partners as equal members, develop meaningful collaboration through recognition of individual experiences and expertise, and ensure the patient perspective is taken into consideration in questionnaire research, the development of data collection tools, and healthcare innovation in general.

Behavioral Health Professionals’ Perceptions on Outcomes of Patient-Controlled Granular Information Sharing Study: Focus Groups and Survey (Preprint)

2020 ◽  
Author(s):  
Julia Ivanova ◽  
Tianyu Tang ◽  
Nassim Idouraine ◽  
Anite Murcko ◽  
Adela Grando ◽  
...  
Keyword(s):  
Focus Groups ◽  
Information Sharing ◽  
Behavioral Health ◽  
Health Professionals ◽  
Medical Information ◽  
Health Data ◽  
Health Record ◽  
Team Members ◽  
Patient Study ◽  
Actual Patient

BACKGROUND Granular information sharing studies rarely use actual patient electronic health record (EHR) information. In a previous study, behavioral health patients categorized their own EHR data into sensitive categories (e.g. mental health) and chose which care team members (e.g. pharmacists) should have access to those records. In this study, behavioral health professionals are provided access to the outcomes of a previous patient study to better understand the perspectives of health professionals on patient-controlled granular information sharing. OBJECTIVE Assess behavioral health professionals’: (1) perspectives on understanding and opinions about granular information sharing; (2) accuracy in assessing redacted medical information; (3) reactions to patient rationale for health data categorization, assignment of sensitivity, and sharing choices; and (4) recommendations on how to improve the process of granular health information sharing. METHODS Four two-hour focus groups and a pre- and post-survey were conducted at two integrated health facilities. During the focus groups, outcomes from a previous study on patients’ medical record sharing choices were shared. Thematic analysis and descriptive statistical analyses were conducted. RESULTS Twenty-eight professionals were initially unaware of or provided incorrect definitions of granular information sharing (56.0%). After having access to outcomes from a previous patient study, professionals increased their mixed perspectives (21.4% to 37.1%) on granular information sharing. A majority (81.3%) identified that key medical data had been redacted from the study case. Many (66.1%) stated they did not understand patient rationale for categorization or medical sharing preferences. Finally, participants recommended that a variety of educational approaches be incorporated to inform patients about granular information and health record sharing processes. CONCLUSIONS This study provides detailed insights from behavioral health professionals on patient-controlled granular information sharing. Health professionals accurately identified information gaps resulting from patient-directed data redaction, improved in their overall concept comprehension, underscored the fine line between patient safety and patient rights, and expressed a commitment to help patients appreciate the risks and benefits associated with granular information sharing. Outcomes will inform the development, deployment and evaluation of an electronic consent tool for granular health data sharing.

scholarly journals “Running myself ragged”: stressors faced by peer workers in overdose response settings

2021 ◽  
Vol 18 (1) ◽  
Author(s):  
Zahra Mamdani ◽  
Sophie McKenzie ◽  
Bernadette Pauly ◽  
Fred Cameron ◽  
Jennifer Conway-Brown ◽  
...  
Keyword(s):  
Drug Use ◽  
Focus Groups ◽  
Mixed Methods Research ◽  
Financial Burden ◽  
People Who Use Drugs ◽  
Frequency Distributions ◽  
Sequential Mixed Methods ◽  
Health Quality ◽  
Mental Health Effects ◽  
Perception Of Health

Abstract Background Peer workers or “peers” (workers with past or present drug use experience) are at the forefront of overdose response initiatives, and their role is essential in creating safe spaces for people who use drugs (PWUD). Working in overdose response settings has benefits for peer workers but is also stressful, with lasting emotional and mental health effects. Yet, little is known about the stressors peer workers face and what interventions can be implemented to support them in their roles. Methods This project used a community-based sequential mixed-methods research design. Eight peer researcher-led focus groups (n = 31) were conducted between November 2018 and March 2019 to assess needs of peer workers. The transcripts were thematically coded and analysed using interpretative description. These results informed a survey, which was conducted (n = 50) in September 2019 to acquire quantitative data on peer workers’ perception of health, quality of life, working conditions and stressors. Frequency distributions were used to describe characteristics of participants. X2 distribution values with Yates correction were conducted to check for association between variables. Results Five themes emerged from the focus groups that point to stressors felt by peer workers: (1) financial insecurity; (2) lack of respect and recognition at work; (3) housing challenges; (4) inability to access and/or refer individuals to resources; and (5) constant exposure to death and trauma. Consistent with this, the factors that survey participants picked as one of their “top three stressors” included financial situation, work situation, and housing challenges. Conclusion Peer workers are faced with a diversity of stressors in their lives which often reflect societal stigmatization of drug use. Recognition of these systemic stressors is critical in designing interventions to ease the emotional, physical and financial burden faced by peer workers.

scholarly journals Virtual external implementation facilitation: successful methods for remotely engaging groups in quality improvement

2021 ◽  
Vol 2 (1) ◽  
Author(s):  
Christine W. Hartmann ◽  
Ryann L. Engle ◽  
Camilla B. Pimentel ◽  
Whitney L. Mills ◽  
Valerie A. Clark ◽  
...  
Keyword(s):  
Public Health ◽  
Quality Improvement ◽  
Evidence Based ◽  
National Program ◽  
Extensive Experience ◽  
Evidence Based Practices ◽  
Team Members ◽  
Virtual Experience ◽  
Key Points ◽  
Program Content

Abstract Background Relatively little guidance exists on how to use virtual implementation facilitation to successfully implement evidence-based practices and innovations into clinical programs. Yet virtual methods are increasingly common. They have potentially wider reach, emergent public health situations necessitate their use, and restrictions on resources can make them more attractive. We therefore outline a set of principles for virtual external implementation facilitation and a series of recommendations based on extensive experience successfully using virtual external implementation facilitation in a national program. Model and recommendations Success in virtual external implementation facilitation may be achieved by facilitators applying three overarching principles: pilot everything, incorporate a model, and prioritize metacognition. Five practical principles also help: plan in advance, communicate in real time, build relationships, engage participants, and construct a virtual room for participants. We present eight concrete suggestions for enacting the practical principles: (1) assign key facilitation roles to facilitation team members to ensure the program runs smoothly; (2) create small cohorts of participants so they can have meaningful interactions; (3) provide clarity and structure for all participant interactions; (4) structure program content to ensure key points are described, reinforced, and practiced; (5) use visuals to supplement audio content; (6) build activities into the agenda that enable participants to immediately apply knowledge at their own sites, separate from the virtual experience; (7) create backup plans whenever possible; and (8) engage all participants in the program. Summary These principles represent a novel conceptualization of virtual external implementation facilitation, giving structure to a process that has been, to date, inadequately described. The associated actions are demonstrably useful in supporting the principles and offer teams interested in virtual external implementation facilitation concrete methods by which to ensure success. Our examples stem from experiences in healthcare. But the principles can, in theory, be applied to virtual external implementation facilitation regardless of setting, as they and the associated actions are not setting specific.

scholarly journals Understanding decisions about antibiotic prescribing in ICU: an application of the Necessity Concerns Framework

2021 ◽  
pp. bmjqs-2020-012479
Author(s):  
Alyssa M Pandolfo ◽  
Robert Horne ◽  
Yogini Jani ◽  
Tom W Reader ◽  
Natalie Bidad ◽  
...  
Keyword(s):  
Focus Groups ◽  
Antibiotic Prescribing ◽  
Negative Consequences ◽  
Out Of Hours ◽  
Team Members ◽  
Clinical Vignettes ◽  
Molecular Microbiology ◽  
Semistructured Interviews ◽  
Decision Making Processes ◽  
The Individual

BackgroundAntibiotics are extensively prescribed in intensive care units (ICUs), yet little is known about how antibiotic-related decisions are made in this setting. We explored how beliefs, perceptions and contextual factors influenced ICU clinicians’ antibiotic prescribing.MethodsWe conducted 4 focus groups and 34 semistructured interviews with clinicians involved in antibiotic prescribing in four English ICUs. Focus groups explored factors influencing prescribing, whereas interviews examined decision-making processes using two clinical vignettes. Data were analysed using thematic analysis, applying the Necessity Concerns Framework.ResultsClinicians’ antibiotic decisions were influenced by their judgement of the necessity for prescribing/not prescribing, relative to their concerns about potential adverse consequences. Antibiotic necessity perceptions were strongly influenced by beliefs that antibiotics would protect patients from deterioration and themselves from the ethical and legal consequences of undertreatment. Clinicians also reported concerns about prescribing antibiotics. These generally centred on antimicrobial resistance; however, protecting the individual patient was prioritised over these societal concerns. Few participants identified antibiotic toxicity concerns as a key influencer. Clinical uncertainty often complicated balancing antibiotic necessity against concerns. Decisions to start or continue antibiotics often represented ‘erring on the side of caution’ as a protective response in uncertainty. This approach was reinforced by previous experiences of negative consequences (‘being burnt’) which motivated prescribing ‘just in case’ of an infection. Prescribing decisions were also context-dependent, exemplified by a lower perceived threshold to prescribe antibiotics out-of-hours, input from external team members and local prescribing norms.ConclusionEfforts to improve antibiotic stewardship should consider clinicians’ desire to protect with a prescription. Rapid molecular microbiology, with appropriate communication, may diminish clinicians’ fears of not prescribing or of using narrower-spectrum antibiotics.

scholarly journals A behaviour change intervention to reduce home exposure to second hand smoke during pregnancy in India and Bangladesh: a theory and evidence-based approach to development

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Veena A. Satyanarayana ◽  
Cath Jackson ◽  
Kamran Siddiqi ◽  
Prabha S. Chandra ◽  
Rumana Huque ◽  
...  
Keyword(s):  
Pregnant Women ◽  
Behaviour Change ◽  
Delphi Survey ◽  
Behaviour Change Techniques ◽  
Evidence Based ◽  
Behaviour Change Intervention ◽  
Behaviour Change Interventions ◽  
Modified Delphi ◽  
Qualitative Interview Study ◽  
At Home

Abstract Background Home exposure to secondhand smoke (SHS) is highly prevalent amongst pregnant women in low- and middle-income countries like India and Bangladesh. The literature on the efficacy of behaviour change interventions to reduce home exposure to SHS in pregnancy is scarce. Methods We employed a theory and evidence-based approach to develop an intervention using pregnant women as agents of change for their husband’s smoking behaviours at home. A systematic review of SHS behaviour change interventions led us to focus on developing a multicomponent intervention and informed selection of behaviour change techniques (BCTs) for review in a modified Delphi survey. The modified Delphi survey provided expert consensus on the most effective BCTs in reducing home exposure to SHS. Finally, a qualitative interview study provided context and detailed understanding of knowledge, attitudes and practices around SHS. This insight informed the content and delivery of the proposed intervention components. Results The final intervention consisted of four components: a report on saliva cotinine levels of the pregnant woman, a picture booklet containing information about SHS and its impact on health as well strategies to negotiate a smoke-free home, a letter from the future baby to their father encouraging him to provide a smoke-free home, and automated voice reminder and motivational messages delivered to husbands on their mobile phone. Intervention delivery was in a single face-to-face session with a research assistant who explained the cotinine report, discussed key strategies for ensuring a smoke-free environment at home and practised with pregnant women how they would share the booklet and letter with their husband and supportive family members. Conclusion A theory and evidence-based approach informed the development of a multicomponent behaviour change intervention, described here. The acceptability and feasibility of the intervention which was subsequently tested in a pilot RCT in India and Bangladesh will be published later.

scholarly journals Harnessing COVID-Driven Technical Innovations for Improved Multi-Disciplinary Cancer Care in the Post-COVID Era: The Virtual Patient Room

2020 ◽  
Vol 27 (1) ◽  
pp. 107327482096480 ◽  
Author(s):  
Austin J. Sim ◽  
Gage Redler ◽  
Jeffrey Peacock ◽  
Cristina Naso ◽  
Stuart Wasserman ◽  
...  
Keyword(s):  
New Technology ◽  
Multidisciplinary Care ◽  
Virtual Patient ◽  
Paradigm Shifts ◽  
Patient Room ◽  
Patient Centered ◽  
Team Members ◽  
The Road ◽  
Centered Care ◽  
Virtual Visits

Emergence of the COVID-19 crisis has catalyzed rapid paradigm shifts throughout medicine. Even after the initial wave of the virus subsides, a wholesale return to the prior status quo is not prudent. As a specialty that values the proper application of new technology, radiation oncology should strive to be at the forefront of harnessing telehealth as an important tool to further optimize patient care. We remain cognizant that telehealth cannot and should not be a comprehensive replacement for in-person patient visits because it is not a one for one replacement, dependent on the intention of the visit and patient preference. However, we envision the opportunity for the virtual patient “room” where multidisciplinary care may take place from every specialty. How we adapt is not an inevitability, but instead, an opportunity to shape the ideal image of our new normal through the choices that we make. We have made great strides toward genuine multidisciplinary patient-centered care, but the continued use of telehealth and virtual visits can bring us closer to optimally arranging the spokes of the provider team members around the central hub of the patient as we progress down the road through treatment.

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