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Understanding the motivations of patients: A co-designed project to understand the factors behind patient engagement.

ABSTRACT: BACKGROUND:Large-scale transformation depends on effective engagement of diverse stakeholders. With the evolution of the role of the 'patient partner' in health-care decision making, understanding the motivations of these individuals is essential to the success of engagement initiatives. This study reports on motivational factors associated with patient engagement in health care. METHODS:Patient co-investigators and a researcher co-designed and conducted this study. A survey was administered to patients and family members. Key informant interviews and previous research informed the development of the survey tool. The survey data were analysed using exploratory factor analysis to identify the underlying dimensions in the data. Cronbach's alpha was used to determine reliability. RESULTS:A total of 1449 individuals participated in the survey. Of these, 543 completed and 427 partially completed the survey (67% complete rate). The mean age of the respondents was 54 years. The majority of participants were female, well-educated, retired, married and lived in an urban centre. Seven motivational factors explained 65% of the total variance. Analysis of internal consistency revealed acceptable reliability for all items. The seven motivations were as follows: Self-fulfillment, Improving Healthcare, Compensation, Influence, Learning New Things, Conditional and Perks. CONCLUSION:The results of this research describe a sample of patient and family members currently engaged with health systems. We identified seven motivational factors underlying their engagement. A deeper knowledge of volunteer motivations will not only create meaningful engagement opportunities for patients, but also enable health organizations to gain from the experience of these individuals, thereby enhancing quality and sustainability of patient engagement programmes.

SUBMITTER: McCarron TL

PROVIDER: S-EPMC6737762 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

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Understanding the motivations of patients: A co-designed project to understand the factors behind patient engagement.

McCarron Tamara L TL Noseworthy Thomas T Moffat Karen K Wilkinson Gloria G Zelinsky Sandra S White Deborah D Hassay Derek D Lorenzetti Diane L DL Marlett Nancy J NJ

Health expectations : an international journal of public participation in health care and health policy 20190804 4

<h4>Background</h4>Large-scale transformation depends on effective engagement of diverse stakeholders. With the evolution of the role of the 'patient partner' in health-care decision making, understanding the motivations of these individuals is essential to the success of engagement initiatives. This study reports on motivational factors associated with patient engagement in health care.<h4>Methods</h4>Patient co-investigators and a researcher co-designed and conducted this study. A survey was a ...[more]

PMID: 31379094

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Project description:BackgroundWith healthcare striving to shift to a more person-centered delivery model, patient and family involvement must have a bigger role in shaping this. While many initiatives involving patients and family members focus on self-care, a broader understanding of patient participation is necessary. Ensuring a viable and sustainable critical number of qualified patients and family members to support this shift will be of utmost importance. The purpose of this study was to understand how health systems are intentionally investing in the training and skill development of patients and family members.MethodsPatient co-investigators and researchers conducted a scoping review of the existing literature on methods adopted by healthcare systems to build the skills and capacity of patients to participate in healthcare decision-making using a recognized methodological framework. Six electronic databases were searched to identify studies. Two independent reviewers screened titles and abstracts and full-text papers for inclusion. The research team independently extracted data. Any disagreements were resolved by achieving consensus through discussion. Quantitative and qualitative content synthesis, as well as a quality assessment, was conducted.ResultsAfter eliminating duplicates, the search resulted in 9428 abstracts. Four hundred fifty-eight articles were reviewed and 15 articles were included. Four themes emerged: forums (33%), patient instructors (20%), workshops (33%), and co-design (13%). Four of the identified studies measured the impact and overall effectiveness of the respective programs. Examples of how patient and family members were supported (invested in) included advocacy training to support future involvement in engagement activities, a training program to conduct patient-led research, involvement in an immersive experience-based co-design initiative, and involvement in training pharmacy students. Overall, these studies found positive outcomes when patients and family members were recipients of these opportunities.ConclusionsThe results of this scoping review demonstrate that an evidence base around programs to advance patient engagement is largely absent. An opportunity exists for further research to identify strategies and measures to support patient engagement in healthcare decision-making.

Project description:BackgroundHealthcare stakeholders have pronounced both enthusiasm and apprehension over the expanding use of real-world evidence (RWE). The patient community-those who benefit from new treatments but are vulnerable to potential safety risks and whose routine medical encounters are used to generate RWE-has been less vocal. Understanding patient perspectives on the use of RWE to guide clinical decision making and inform regulatory decisions and value assessments is imperative.MethodsWe convened a day-long, multi-stakeholder roundtable in Washington D.C., USA, on 31 July 2017 to gather patient-community views on RWE and related concerns and the communications, information and tools needed by patients to understand, trust, and use RWE. Participants included a convenience sample of National Health Council (NHC) members primarily representing patient groups as well as non-patient members with an interest in RWE. Participants were organized into small, pre-assigned groups, ensuring representativeness across stakeholders and patient leadership. Discussions, including storyboards, notes, and illustrative examples were captured and later analyzed thematically by NHC staff.ResultsTen RWE themes emerged: (1) most patients were unaware of RWE and its actual or potential uses, (2) common definitions for real-world data and RWE are needed, (3) patient organizations need RWE skills and tools, (4) patient-scientist partnerships can help differentiate high-quality RWE, (5) RWE should inform decision making, (6) clinician support is needed for RWE uptake in patient decision making, (7) communications to patients should be balanced and empowering, (8) context of use impacts RWE acceptability/trust, (9) privacy/data ownership require clarity, and (10) patient-generated data are also real-world data (RWD).ConclusionPatients see great possibility in using RWE to understand how a treatment works-to find someone that "looks like me" as assurance of how a treatment might benefit them personally. Patient groups will play a critical role in helping to educate constituents on understanding, contributing to, and using RWE. To maximize patient uptake and the co-development and application of RWE, patient groups require education and tools.

Project description:ObjectiveLimited health literacy negatively impacts understanding of medication-related information. We describe an innovative methodology designed to optimize user understanding of patient medication labeling through the systematic application of evidence-based health literacy principles, using the Patient Package Insert (PPI) for bezlotoxumab (ZINPLAVA™, Merck & Co., Inc., Kenilworth, NJ, USA) as an example.MethodsWe used a mixed-model, iterative approach consisting of three phases: (1) content development; (2) focus group testing; and (3) comprehension testing. Content development was based on evidence-based health literacy principles and conducted through a collaborative partnership between industry and academia professionals. The PPI was then tested in four focus groups, two in Atlanta and two in Chicago, with an emphasis on collecting feedback from respondents with limited health literacy, evaluated using the Newest Vital Sign (NVS) health literacy assessment tool. Subsequent comprehension testing included patients with C. diff, caregivers, and general population members, with a pre-defined target sample of 25% with limited health literacy identified through two health literacy assessment tools: the Single Item Literacy Screener and the NVS.ResultsContent development of the bezlotoxumab PPI occurred in May 2015. In June 2015, focus group respondents (n = 34) provided generally favorable feedback, with insights revolving around organization and usability; language and comprehension; and volume of information. Comprehension testing of the revised PPI resulted in average comprehension scores of 96% for the overall population (n = 59), 90% for individuals presenting with limited health literacy (n = 14), and 97% for those with adequate health literacy (n = 45). This PPI development approach was similarly effective for subsequent products across diverse therapeutic areas, with comprehension scores ≥ 86% for all participants (n = 1197).ConclusionThis methodology represents a significant advancement for the development of understandable patient medication labeling, especially for people with limited health literacy.

Project description:BackgroundDespite the proven benefits of exercise rehabilitation for numerous health conditions, musculoskeletal injuries and recovery from surgery, patient adherence to such programs is reported to often be less than 35%. Increasing patient engagement therefore has the potential to improve patient health outcomes, benefiting the patient, their carers and the services that support them. The aims of this review were to identify the factors that contribute to 'patient' engagement in prescribed exercise rehabilitation using the COM-B (capability, opportunity, motivation-behaviour) framework of behavioural analysis.MethodsFive electronic databases (PubMed, Embase, Cochrane, Web of Science, and ClinicalTrials.gov) were searched. 'COM-B' was the key word searched for specifically within titles and abstracts, combined with either 'physical activity' OR 'exercise' included using the 'AND' operation. Records were then filtered and excluded following full-text screening based on the predetermined eligibility criteria.ResultsTwenty studies were included in the review. The main COM-B themes highlighted for improving patient engagement were: capability-improving patient knowledge and cognitive skills for behavioural regulation, such as 'action planning' and 'action control', which could also benefit time-management; opportunity-a balanced life situation that enabled time to be devoted to the exercise program, social support, easily accessible and affordable resources and services; and motivation-increasing patient levels of self-efficacy and autonomous motivation, which were noted to be influenced by levels of perceived 'capability', additionally 'motivation' was noted to be influenced by patients perceiving the benefits of the exercise, and adherence to the program was promoted by 'goal-setting'. Other issues in the 'capability' domain included a fear and/or dislike of exercise.ConclusionPatient engagement behavior has been shown to be influenced by both external (opportunity) and intrapersonal variables (capability and motivation). Those prescribing exercises within a rehabilitation program need to discuss these factors with their patients and co-design the exercise rehabilitation program in partnership with the patient, since this is likely to improve patient engagement, and thereby result in superior health outcomes. Furthermore, these factors need to be a consideration in clinical trials, if the findings from such trials are to translate into mainstream healthcare settings.

Project description:BackgroundIndiscriminate use of laboratory blood testing in hospitals contributes to patient discomfort and healthcare waste. Patient engagement in low-value healthcare can help reduce overuse. Understanding patient experience is necessary to identify opportunities to improve patient engagement with in-hospital laboratory testing.ObjectivesTo understand patient experience with the process of in-hospital laboratory blood testing.MethodsWe used a qualitative study design via semistructured interviews conducted online or over the phone. Participants were adult patients or family members/caregivers (≥18 years of age) with a recent (within 12 months of interview) experience of hospitalization in Alberta or British Columbia, Canada. We identified participants through convenience sampling and conducted interviews between May 2021 and June 2022. We analysed transcripts using thematic content analysis. Recruitment was continued until code saturation was reached.ResultsWe interviewed 16 participants (13 patients, 1 family member and 2 caregivers). We identified four themes from patients' experiences of in-hospital laboratory blood testing: (i) patients need information from healthcare teams about expected blood testing processes, (ii) blood draw processes should consider patient comfort and preferences, (iii) patients want information from their healthcare teams about the rationale and frequency of blood testing and (iv) patients need information on how their testing results affect their medical care.ConclusionCurrent laboratory testing processes in hospitals do not facilitate shared decision-making and patient engagement. Patient engagement with laboratory testing in hospitals requires an empathetic healthcare team that provides clear communication regarding testing procedures, rationale and results, while considering patient preferences and offering opportunities for involvement.Patient or public contributionWe interviewed 16 patients and/or family members/caregivers regarding their in-hospital laboratory blood testing experiences. Our findings show correlations between patient needs and patient recommendations to make testing processes more patient-centred. To bring a lived-experience lens to this study, we formed a Patient Advisory Council with 9-11 patient research partners. Our patient research partners informed the research design, co-developed participant recruitment strategies, co-conducted data collection and informed the data analysis. Some of our patient research partners are co-authors of this manuscript.

Project description:BackgroundAs research teams, networks, and institutes, and health, medical, and scientific communities begin to build consensus on the benefits of patient engagement in cancer research, research funders are increasingly looking to meaningfully incorporate patient partnership within funding processes and research requirements. The Canadian Cancer Society (CCS), the largest non-profit cancer research funder in Canada, set out to co-create a patient engagement in cancer research strategy with patients, survivors, caregivers and researchers. The goal of this strategy was to meaningfully and systematically engage with patients in research funding and research activities.MethodsA team of four patient partners with diverse cancer and personal experiences, and two researchers at different career stages agreed to participate as members of the strategy team. Ten staff members participated in supportive roles and to give context regarding different departments of CCS. The strategy was co-developed in 2021/2022 over a series of 7 workshops using facilitation strategies such as ground rules and consensus building, and methods such as Design Thinking. The strategy was subjected to 3 rounds of validation.ResultsThe co-creation and validation process resulted in a multi-faceted strategy with actionable sections, including vision, guiding principles, engagement methods, 13 prioritized engagement activities spanning the spectrum of research funding, and an evaluation framework. The experience of co-creating the strategy was captured using the Patient and Public Engagement Evaluation Tool and revealed a positive, supportive experience.ConclusionsLessons learned included the value of an emphasis on a co-creation process from day one, the utility of facilitation techniques such as ground rules for dialogue, consensus building and Design Thinking, and the importance (and challenge) of designing for and incorporating equity when drafting the strategy. Future work will include implementation and evaluation of the strategy, as well as an examination of further ways to meaningfully and systematically engage diverse voices in research and research funding.

Project description:IntroductionPatient-centred care can be facilitated by co-design, which refers to collaboration between healthcare professionals and consumers in producing and implementing healthcare. Systematic reviews on co-design have mainly focused on the effectiveness of co-produced healthcare interventions. Less attention has been directed towards the experiences of patients in co-designed interventions. This rapid review aims to explore patient experiences of co-designed rehabilitation interventions and inform rehabilitation decision-making.Methods and analysisA rapid review will expedite timely information on co-design experiences for stakeholders. Four electronic databases, including Cochrane CENTRAL, MEDLINE, Embase and CINAHL, will be searched for papers published from 1 January 2000 to 1 January 2022. The Cochrane Risk of Bias tool will be used for randomised trials. Critical appraisal checklists from The Joanna Briggs Institute shall evaluate the risk of bias of non-randomised trials and qualitative studies. A narrative synthesis will be provided for the quantitative studies. Thematic synthesis will be conducted on qualitative findings. The overall strength of the evidence will be measured using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) framework for quantitative investigations and the GRADE-Confidence in Evidence from Reviews of Qualitative Research for qualitative studies. The results will be presented using narrative summaries, identified themes, summary tables, flow charts and quantitative statistical analyses.Ethics and disseminationEthics approval is not required for the review. The protocol and rapid review will be submitted to an online, open access and peer-reviewed journal for publication. The review findings will be rapidly translated to consumers, clinicians, healthcare leaders, organisations, researchers and policy makers via publications, evidence summaries, conferences, workshops, websites, social media and online events.Prospero registration numberCRD42021264547.

Dataset Information

Understanding the motivations of patients: A co-designed project to understand the factors behind patient engagement.

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Understanding the motivations of patients: A co-designed project to understand the factors behind patient engagement.

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