Background: Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision‐making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment bodies.Objective: Our aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods.Search strategy and inclusion criteria: We undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut‐off of publications after July 2018.Data extraction and synthesis: Data were extracted from 91 publications, coded and thematically analysed.Main results: A total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for the evaluation of benefits and costs of patient engagement.Discussion and conclusions: Currently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures.
1 July 2012 in Technological Forecasting and Social Change
Background: Due to their central position in the modern food system, food stores present a unique opportunity to promote healthy dietary behaviour. However, there is a lack of insight into the factors that impede or enhance the implementation of nutritional interventions in food stores. We applied a systems innovation and implementation science framework to the identification of such barriers and facilitators. Methods: We conducted a systematic literature review. A search string was developed to identify qualitative and quantitative articles on environmental nutritional interventions in the food store. Four databases were systematically searched for studies published between 2000 and 2018. Eligible publications described study designs or original studies, focused on stimulating healthier dietary behaviour through environmental changes in retail settings and contained information on the perceptions or experiences of retailers or interventionists regarding the implementation process of the intervention. Context-descriptive data was extracted and a quality assessment was performed. Results: We included 41 articles, of which the majority was conducted in the USA and involved single stores or a mix of single and multi-store organisations. We categorized barriers and facilitators into 18 themes, under five domains. In the ‘outer setting’ domain, most factors related to consumers’ preferences and demands, and the challenge of establishing a supply of healthy products. In the ‘inner setting’ domain, these related to conflicting values regarding health promotion and commercial viability, store lay-out, (insufficient) knowledge and work capacity, and routines regarding waste avoidance and product stocking. In the ‘actors’ domain, no major themes were found. For the ‘intervention ‘domain’, most related to intervention-context fit, money and resource provision, material quality, and the trade-offs between commercial costs and risks versus commercial and health benefits. For the ‘process’ domain, most factors related to continuous engagement and strong relationships. Conclusions: This review provides a comprehensive overview of barriers and facilitators to be taken into account when implementing nutritional interventions in food stores. Furthermore, we propose a novel perspective on implementation as the alignment of intervention and retail interests, and a corresponding approach to intervention design which may help avoid barriers, and leverage facilitators. Trial registration: PROSPERO; CRD42018095317.
8 November 2020 in Journal of Evaluation in Clinical Practice
Background: Shared decision‐making (SDM) is considered the “final stage” that completes the implementation of evidence‐based medicine. Yet, it is also considered the most neglected stage. SDM shifts the epistemological authority of medical knowledge to one that deliberately includes patients' values and preferences. Although this redefines the work of the clinical encounter, it remains unclear what a shared decision is and how it is practiced.Aim: The aim of this paper is to describe how healthcare professionals manoeuvre the nuances of decision‐making that shape SDM. We identify barriers to SDM and collect strategies to help healthcare professionals think beyond existing solution pathways and overcome barriers to SDM.Methods: Semi‐structured interviews were conducted with 68 healthcare professionals from psychiatry, internal medicine, intensive care medicine, obstetrics and orthopaedics and 15 patients.Results: This study found that healthcare professionals conceptualize SDM in different ways, which indicates a lack of consensus about its meaning. We identified five barriers that limit manoeuvring space for SDM and contest the feasibility of a uniform, normative SDM model. Three identified barriers: (a) “not all patients want new role,” (b) “not all patients can adopt new role,” and (c) “attitude,” were linked to strategies focused on the knowledge, skills and attitudes of individual healthcare professionals. However, systemic barriers: (d) “prioritization of medical issues” and (e) “lack of time” render such individual‐focused strategies insufficient.Conclusion: There is a need for a more nuanced understanding of SDM as a “graded” framework that allows for flexibility in decision‐making styles to accommodate patient's unique preferences and needs and to expand the manoeuvring space for decision‐making. The strategies in this study show how our understanding of SDM as a process of multi‐dyadic interactions that spatially exceed the consulting room offers new avenues to make SDM workable in contemporary medicine.
To compare experienced continuity of care among women who received midwife-led versus obstetrician-led care. Secondly, to compare experienced continuity of care with a. experienced quality of care during labor and b. perception of labor. We conducted a questionnaire survey in a region in the Netherlands in 2014 among 790 women after they gave birth. To measure experienced continuity of care, the Nijmegen Continuity Questionnaire was used. Quality of care during labor was measured with the Pregnancy and Childbirth Questionnaire, and to measure perception of labor we used the Childbirth Perception Scale. Three hundred twenty five women consented to participate (41%). Of these, 187 women completed the relevant questions in the online questionnaire. 136 (73%) women were in midwife-led care at the onset of labor, 15 (8%) were in obstetrician-led care throughout pregnancy and 36 (19%) were referred to obstetrician-led care during pregnancy. Experienced personal and team continuity of care during pregnancy were higher for women in midwife-led care compared to those in obstetrician-led care at the onset of labor. Experienced continuity of care was moderately correlated with experienced quality of care although not significantly so in all subgroups. A weak negative correlation was found between experienced personal continuity of care by the midwife and perception of labor. This study suggests that experienced continuity of care depends on the care context and is significantly higher for women who are in midwife-led compared to obstetrician-led care during labor. It will be a challenge to maintain the high level of experienced continuity of care in an integrated maternity care system. Experienced continuity of care seems to be a distinctive concept that should not be confused with experienced quality of care or perception of labor and should be considered as a complementary aspect of quality of care.
Whilst the transformation towards digital healthcare is accelerating, there is still a substantial risk of excluding people with a distance to the online world. Groups like people with a low socioeconomic position, people with a migrant background or the elderly, who are already most at risk of experiencing health inequalities, are simultaneously experiencing increased digital exclusion. Researchers play a role in determining how eHealth access is framed and can thus impact how the barriers to its use are addressed. This qualitative meta-review critically evaluates the way researchers (as authors) discuss eHealth use in digitally marginalised groups. Specifically, it seeks to understand how eHealth is framed to address existing health systems problems; how the barriers to eHealth use are presented and which solutions are provided in response; and who authors suggest should be responsible for making eHealth work. The results of this review found four paradoxes in how current literature views eHealth use. Firstly, that health systems problems are complex and nuanced, yet eHealth is seen as a simple answer. Secondly, that there are many political, social and health systems-based solutions suggested to address eHealth use, however most of the identified barriers are individually framed. This focus on personal deficits results in misallocating responsibility for making these systemic improvements. Thirdly, although eHealth is meant to simplify the tasks of patients and healthcare workers, these are the groups most often burdened with the responsibility of ensuring its success. Lastly, despite tailoring eHealth to the user being the most suggested solution, researchers generally speak about groups as a homogenous entity - thus rendering tailoring difficult. Ultimately, this review finds that a shift to focus research on addressing systemic issues on a systems level is necessary to prevent further exacerbating existing health inequalities.