Engaging under- and/or never-engaged populations in health services: A systematic review

Patient engagement is a mechanism used to facilitate person-centred care, however, has not been realized in all patient populations. Often, many marginalized populations still remain under- and/or never-engaged. The purpose of this systematic review was to: 1) identify methods or interventions that have been used to engage under- and/or never-engaged populations in health services and 2) identify outcomes that are associated with engaging under- and/or never-engaged populations in health services. A comprehensive search using the Ovid MEDLINE, EMBASE and CINAHL databases was conducted to examine literature between January 2002 and January 2015. Twenty-nine studies met the inclusion criteria. Data was extracted from these studies and findings are synthesized based on discrete themes that map to the research objectives. The majority of studies were quantitative, repeated-measures designs and concentrated in the United States. Hispanic and Latino/a populations were most frequently included in these studies. The main methods of recruitment included: 1) referral from a healthcare provider, 2) patient self-referral after seeing advertisements on mass media or targeted media, 3) directly approached by researcher in-person or telephone, and 4) administrative databases. Interventions occurred primarily at the individual-level, however some system-level interventions were identified. Five main outcomes resulted from the interventions, including: 1) behavioural change, 2) physiological, 3) psychosocial, 4) system and 5) process. Finally, culture-specific components were embedded in the interventions, both as surface and deep structures. This study provides future direction for patient engagement related projects, as it relates to under-and never-engaged population in healthcare. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens

Patient Priorities Concerning Treatment Decisions for Advanced Neuroendocrine Tumors Identified by Discrete Choice Experiments.

BACKGROUND Patients with advanced neuroendocrine tumors (NETs) have multiple treatment options. Ideally, treatment decisions are shared between physician and patient; however, previous studies suggest that oncologists and patients place different value on treatment attributes such as adverse event (AE) rates. High-quality information on NET patient treatment preferences may facilitate patient-centered decision making by helping clinicians understand patient priorities. METHODS This study used 2 discrete choice experiments (DCE) to elicit preferences of NET patients regarding advanced midgut and pancreatic NET (pNET) treatments. The DCEs used the "potentially all pairwise rankings of all possible alternatives" (PAPRIKA) method. The primary objective was to determine relative utility rankings for treatment attributes, including progression-free survival (PFS), treatment modality, and AE rates. Ranking of attribute profiles matching specific treatments was also determined. Levels for treatment attributes were obtained from randomized clinical trial data of NET treatments. RESULTS One hundred and 10 participants completed the midgut NET DCE, and 132 completed the pNET DCE. Longer PFS was the highest ranked treatment attribute in 64.5% of participants in the midgut NET DCE, and in 59% in the pNET DCE. Approximately, 40% of participants in both scenarios prioritized lower AE rates or less invasive treatment modalities over PFS. Ranking of treatment profiles in the midgut NET scenario identified 60.9% of participants favoring peptide receptor radionuclide therapy (PRRT), and 30.0% somatostatin analogue dose escalation. CONCLUSION NET patients have heterogeneous priorities when choosing between treatment options based on the results of 2 independent DCEs. These results highlight the importance of shared decision making for NET patients

Lessons learned: Linking patient-reported outcomes data with administrative databases

Introduction Since 2007, Cancer Care Ontario (CCO) has systematically collected patient-reported outcomes (PROs) in the form of symptom data, for cancer outpatients visiting regional cancer centres or affiliate institutions. Data are used in real-time to facilitate conversation between clinicians and patients and have recently been combined with provincial administrative databases. Objectives and Approach CCO collects PROs using the Edmonton Symptom Assessment System (ESAS), which scores 9 symptoms on a scale of 0 (no symptoms) to 10 (worst symptom severity). Data were imported from CCO in 2015 and linked to a cancer cohort at ICES. We investigated differences between patients who completed $\geq$1 ESAS record and patients who did not, as well as the number of records, timing of data collection and missingness. We describe our experience linking and using the PRO data to administrative data, including presenting trajectories of symptoms over time and combining scores into composite indices. Results 120,745 cancer patients had 729,861 symptom records between 2007 and 2014. Not all patients with a cancer diagnosis had $\geq$1 ESAS record and this varied by patient, disease and system level factors. Because implementation occurred from a clinical perspective, data collection was irregular within and across patients and depended on treatment and other factors; the number of records per patient varied, as well the number of contributing patients in each time period following diagnosis. Attempts were made to create meaningful composite indices by combining all symptom scores as well as combining multiple high scores for each individual symptom. As a result, selecting the best statistical analysis to use these PRO data as an exposure or outcome is still uncertain. Conclusion/Implications PRO data linked to provincial, administrative data holdings represent a new frontier for population-based cancer research, both in their challenging structure as well as their implications for clinical practice and health system. These lessons learned will hopefully support other researchers rigorous use of these data in the future

Tackling gaps in developing life-changing treatments for dementia.

Since the G8 dementia summit in 2013, a number of initiatives have been established with the aim of facilitating the discovery of a disease-modifying treatment for dementia by 2025. This report is a summary of the findings and recommendations of a meeting titled "Tackling gaps in developing life-changing treatments for dementia", hosted by Alzheimer's Research UK in May 2018. The aim of the meeting was to identify, review, and highlight the areas in dementia research that are not currently being addressed by existing initiatives. It reflects the views of leading experts in the field of neurodegeneration research challenged with developing a strategic action plan to address these gaps and make recommendations on how to achieve the G8 dementia summit goals. The plan calls for significant advances in (1) translating newly identified genetic risk factors into a better understanding of the impacted biological processes; (2) enhanced understanding of selective neuronal resilience to inform novel drug targets; (3) facilitating robust and reproducible drug-target validation; (4) appropriate and evidence-based selection of appropriate subjects for proof-of-concept clinical trials; (5) improving approaches to assess drug-target engagement in humans; and (6) innovative approaches in conducting clinical trials if we are able to detect disease 10-15 years earlier than we currently do today

Preferences for the Role in Making Treatment Decisions: A Comparison between Patients and Patient Advocates in the Neuroendocrine Cancer Population

Background: Patient engagement has become a common focus for healthcare organizations in the last decade and is a priority in Canadian healthcare policies and research strategies. Objectives: The objective of this thesis was 1) to examine the association between the preferred role in treatment decisions that adult patients and patient advocates with a rare cancer, neuroendocrine (NETs), wish to play in their care, and 2) to test the hypothesized relationship with ehealth literacy, trust in physician, information seeking behaviours and sociodemographic variables within and across both groups (patients and patient advocates). Design: A cross-sectional survey design was used to measure preferred roles in problem solving and decision-making. Methods: Preferred roles were measured across two health vignettes: ‘current health condition’ and ‘chest pain’. Bivariate analysis was conducted to determine associations between socio-demographic variables and preferences for problem solving (PS) and decision-making (DM). PS is preference-independent and relates to tasks in determining the nature of the problem, structuring the decision tree and determining probabilities, such as who should determine the risks and benefits of different treatment options. Conversely, DM tasks relate to determining patient preferences (including risk attitude) and making the decision, considering what matters to you as an individual. Associations between the eHealth literacy score, Trust-in-Physician score, information seeking behaviour and continuous socio-demographic variables were calculated. Results: There were significant differences between preferred roles and trust in the physician and whether a participant was a patient or a patient advocate. There are three main categories of preferred roles: passive, shared and autonomous. The results of this research showed that most patients preferred a passive or shared-leaning passive role, had a high level of perceived health information literacy, and had high levels of trust in their physician. Patient advocates more often preferred a shared role, had a lower trust in their physician and lower perceived ehealth literacy compared to patients. Results of the binary logistic regression showed that trust in the physician predicted respondents of both groups’ preferred roles for both vignettes; chest pain and neuroendocrine treatment decisions. Conclusion: This study provides new knowledge that advances the understanding of the association of preferred roles of problem solving and decision-making for patients as well as patient advocates with a rare cancer.Ph.D

Psychological aspects of additional procedures following breast reconstruction

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Hindsight is 20/20: Lessons learned after implementing experience based design

Experience Based Design (EBD) uses patient and staff experiences to identify quality improvement opportunities in healthcare settings. An EBD Collaborative was established to share successes and challenges related to the EBD projects. This paper summarizes the various lessons learned. A document analysis was conducted that examined meeting minutes and audio recordings, email communications, newsletters, project updates, project spotlights and evaluation surveys and interviews. A total of ten key themes were identified. While EBD teams encountered challenges, overall the experience led to successful quality improvement initiatives. In particular, staff gained new insights from the patients’ perspective, which enhanced their understanding of patient experience. Engaging patients in the work to co-design and improve the patient experience requires work, commitment, time and leadership. There are several strategies that the EBD teams found effective as outlined in this paper; however, the most important element of success is the ability to listen and act on what is heard

Hospital capacity for patient engagement in planning and improving health services: a cross-sectional survey

Abstract Background Patient engagement (PE) in planning or improving hospital facilities or services is one approach for improving healthcare delivery and outcomes. To provide evidence on hospital capacity needed to support PE, we described the attributes of hospital PE capacity associated with clinical quality measures. Methods We conducted a cross-sectional survey of general and specialty hospitals based on the Measuring Organizational Readiness for Patient Engagement framework. We derived a PE capacity index measure, and with Multiple Correspondence Analysis, assessed the association of PE capacity with hospital type, and rates of hand-washing, C. difficile infection rates and 30-day readmission. Results Respondents (91, 66.4%) included general: < 100 beds (48.4%), 100+ beds (27.5%), teaching hospitals (11.0%) and specialty (13.2%) hospitals. Most featured PE in multiple clinical and corporate departments. Most employed PE in a range of Planning (design/improve facilities 94.5%, develop strategic plans 87.9%), Evaluation/Quality Improvement (accreditation 91.2%, develop QI plans 90.1%) and Service Delivery activities (develop information/communication aids 92.3%). Hospitals enabled PE with multiple supports (median 12, range 0 to 25), most often: 76.9% strategic plan recognizes PE, 74.7% patient/family advisory council, and 69.2% pool of patient volunteers; and least often: 30.0% PE staff, 26.4% PE funding and 16.5% patient reimbursement or 3.3% compensation. Hospitals employed a range of less (inform, consult) and more (involve, partner) active modes of engagement. Two variables accounted for 29.6% of variance in hospital PE capacity index measure data: number of departments featuring PE and greater use of active engagement modes. PE capacity was not associated with general hospital type or clinical quality measures. Conclusions Hospitals with fewer resources can establish favourable PE conditions by deploying PE widely and actively engaging patients. Healthcare policy-makers, hospital executives and PE managers can use these findings to allocate PE resources. Future research should explore how PE modes and methods impact clinical outcomes

Impacts of patient and family engagement in hospital planning and improvement: qualitative interviews with patient/family advisors and hospital staff

Abstract Background Patient engagement (PE) in hospital planning and improvement is widespread, yet we lack evidence of its impact. We aimed to identify benefits and harms that could be used to assess the impact of hospital PE. Methods We interviewed hospital-affiliated persons involved in PE activities using a qualitative descriptive approach and inductive content analysis to derive themes. We interpreted themes by mapping to an existing framework of healthcare performance measures and reported themes with exemplar quotes. Results Participants included 38 patient/family advisors, PE managers and clinicians from 9 hospitals (2 < 100 beds, 4 100 + beds, 3 teaching). Benefits of PE activities included 9 impacts on the capacity of hospitals. PE activities involved patient/family advisors and clinicians/staff in developing and spreading new PE processes across hospital units or departments, and those involved became more adept and engaged. PE had beneficial effects on hospital structures/resources, clinician staff functions and processes, patient experience and patient outcomes. A total of 14 beneficial impacts of PE were identified across these domains. Few unintended or harmful impacts were identified: overextended patient/family advisors, patient/family advisor turnover and clinician frustration if PE slowed the pace of planning and improvement. Conclusions The 23 self reported impacts were captured in a Framework of Impacts of Patient/Family Engagement on Hospital Planning and Improvement, which can be used by decision-makers to assess and allocate resources to hospital PE, and as the basis for ongoing research on the impacts of hospital PE and how to measure it

The Person-Centred Care Guideline: From Principle to Practice

Background: A standardized definition and approach for the delivery of person-centered care (PCC) in cancer care that is agreed upon by all key policy makers and clinicians is lacking. The PCC Guideline defines core PCC principles to outline a level of service that every person accessing cancer services in Ontario, Canada should expect to receive. This article describes the dissemination of the PCC Guideline in practice. Methods: Three strategies were utilized: (1) educational intervention via a PCC video, (2) media engagement, and (3) research/knowledge user networks. Results: As of October 2016, the PCC video has been viewed 7745 times across 92 countries. Significant mean differences pre- and post-PCC video were found for understanding of PCC principles ( P < .001) and perceived ability to bring these PCC principles to practice ( P < .001). Through content analysis, the PCC Guideline recommendations were referenced 236 times, with “Enabling Patients to Actively Participate in their Care” (n = 81), and “Essential Requirements of Care” (n = 79) being referenced most frequently. Conclusions: These strategies are an effective way to target multiple PCC stakeholders in the health-care system to increase awareness of the PCC Guideline, in order to further impart knowledge of PCC behaviors