Continuity of care is an important and distinct aspect of childbirth experience: findings of a survey evaluating experienced continuity of care, experienced quality of care and women’s perception of labor

Background: 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. Methods: 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. Results: 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. Conclusion: 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

A qualitative research on co-creating care pathways for Sarcoma and GIST by stimulating reflection

Introduction: Care Pathway Management intends to enhance the quality of care by restructuring care services. As recipients of care, patients have relevant experiential knowledge on the provision of care, but they are rarely involved in Care Pathway Management due to various barriers. This study aims to acquire insights into how patients can be meaningfully involved in Care Pathway Management. Methods: A case study was cond

Evaluating the 'return on patient engagement initiatives' in medicines research and development: A literature review

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 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

‘Green Metrics’ - Incorporating Environmental Dimensions In Health Technology Assessment

Climate change as the result of human action and the risks it poses to human health are well established. In healthcare there is increasing attention to climate and environmental impacts of the use of medical and health technologies. As part of a lifecycle approach, health technology assessment (HTA) needs to take climate and environmental impacts into account. In 2020, the new definition of HTA added the dimension 'environmental aspects', with which the value of health technologies can be determined and assessed in terms of their impact on the environment. This led several HTA organizations to explore opportunities for including environmental impacts in HTA procedures. It is, however, yet unclear how many researchers and HTA organizations are already working on this sustainability dimension, in what way, with which (international) partners, and what they have achieved as of now. Furthermore, the complex relations between the climate crisis, environmental pollution, health and care are difficult to trace, and methods are scarce. In HTA, there is an increasing need for outcome measures that, in addition to clinical utility, effectiveness, efficiency or satisfaction, also quantify the environmental impact of medical interventions (i.e., green metrics). We report on (i) a scoping of international (research) groups and (HTA) organizations that are working on green metrics; (ii) a literature review into the state of affairs with regard to metrics and methods; and (iii) an impact analysis of possible future inclusion of green metrics in HTA procedures. We supplemented a review of (grey) literature with interviews with HTA organizations pioneering with green metrics, and we have conducted a review of available scientific literature, yielding examples of incorporation of environmental aspects into HTA and reports on practical implications. Carbon dioxide emissions and pollution by the health sector are currently being explored as green metrics. Differences between direct and indirect environmental impacts complicate the evaluation. Green metrics should eventually make it possible to assess sustainability in healthcare as part of a lifecycle approach

Determining the ‘value’ of patient engagement

“What is in it for me?” A question often asked by people involved in patient engagement practices. Evaluating whether engagement adds value for different stakeholder groups can be an effective tool to further support patient engagement. The PARADIGM project is a European public-private partnership that is developing ways to ensure that patients are meaningfully involved in medicines development. One of the aims of the project is to develop metrics to measure the “return on engagement”. To contribute to this system innovation, the PARADIGM workstream co-led by MSD and the Athena Institute (VU Amsterdam) aims to enrich good quality engagement practices with process indicators that can be used to monitor and evaluate whether the ongoing process of developing a new medicine leads to valuable outcomes for all stakeholders involved. This includes patient representatives or patient partners, Health Technology Assessment (HTA) organisations and industry. It will deliver a coherent and flexible framework that can be used as a toolbox. This implies that the framework can be used by participants in a wide variety of engagement practices, like patient engagement in protocol development, in agenda setting or in approval or reimbursement procedures of new medicines. At the end of the 30-month project, the monitoring and evaluation framework can be used as a toolbox to open the floor for full dialogue, containing helpful evaluation tools for everyone involved. This undertaking has not been done before and addresses the need for a consensus-based monitoring and evaluation framework. Current scientific and non-scientific literature suggests several indicators to measure the value of patient engagement, but these are scattered over decision points and do not always link up to clear outcomes. Furthermore, less is published on methods to actually measure the value of patient engagement, and validated tools for evaluating impact are not available. The explicit goal of our work is to create this framework in a co-construction process with all relevant stakeholders, where PARADIGM partners and others are invited to discuss whether the most relevant endpoints are included and how the framework can be as practical as possible. We are applying the Reflexive Monitoring in Action (RMA) approach, an integrated methodology to encourage learning within multi-actor groups or networks as well as institutional change, in order to not only build a framework but work on successful implementation by co-developing it with the future end-users. In the first six months of PARADIGM, we worked on a literature review to gain insights on existing tools, indicators and the like, leading to a preliminary framework that conceptualizes the (observable) outcomes and impact for medicines development across the lifecycle. Furthermore, we explored what constitutes value of patient engagement for all parties involved, and how this can be measured; what are appropriate and feasible indicators, what is the return on engagement? In parallel, we started to collect examples of patient engagement practices from within and outside the PARADIGM consortium. We concluded these efforts by organising a workshop, kindly hosted by the Association of the British Pharmaceutical Industry (ABPI) in London, where participants provided valuable input on how to best present and categorise the results of the literature review and how we should approach which examples of existing patient engagement practices. We are now embarking on, first, the retrospective analysis of examples of patient engagement practices based on the preliminary framework together with the respective partners. We will apply, test and refine the framework by evaluating the examples. Second, we will apply the improved framework to prospective cases and use it to help the stakeholders enhance the value and impact of the engagement. This will lead us to produce two distinct, but interrelated products for all parties: 1) a tailor-made advice on how valuable impact can be reached in their own context 2) an accompanying evaluation framework that can be used by everyone who wants to enrich good quality engagement practices and improve the value and impact for all involved. We strongly believe that the co-creation of this actionable framework will greatly support the cultural shift that is needed to move the needle towards greater patient engagement in medicines R&D

Determining the ‘value’ of patient engagement

“What is in it for me?” A question often asked by people involved in patient engagement practices. Evaluating whether engagement adds value for different stakeholder groups can be an effective tool to further support patient engagement. The PARADIGM project is a European public-private partnership that is developing ways to ensure that patients are meaningfully involved in medicines development. One of the aims of the project is to develop metrics to measure the “return on engagement”. To contribute to this system innovation, the PARADIGM workstream co-led by MSD and the Athena Institute (VU Amsterdam) aims to enrich good quality engagement practices with process indicators that can be used to monitor and evaluate whether the ongoing process of developing a new medicine leads to valuable outcomes for all stakeholders involved. This includes patient representatives or patient partners, Health Technology Assessment (HTA) organisations and industry. It will deliver a coherent and flexible framework that can be used as a toolbox. This implies that the framework can be used by participants in a wide variety of engagement practices, like patient engagement in protocol development, in agenda setting or in approval or reimbursement procedures of new medicines. At the end of the 30-month project, the monitoring and evaluation framework can be used as a toolbox to open the floor for full dialogue, containing helpful evaluation tools for everyone involved. This undertaking has not been done before and addresses the need for a consensus-based monitoring and evaluation framework. Current scientific and non-scientific literature suggests several indicators to measure the value of patient engagement, but these are scattered over decision points and do not always link up to clear outcomes. Furthermore, less is published on methods to actually measure the value of patient engagement, and validated tools for evaluating impact are not available. The explicit goal of our work is to create this framework in a co-construction process with all relevant stakeholders, where PARADIGM partners and others are invited to discuss whether the most relevant endpoints are included and how the framework can be as practical as possible. We are applying the Reflexive Monitoring in Action (RMA) approach, an integrated methodology to encourage learning within multi-actor groups or networks as well as institutional change, in order to not only build a framework but work on successful implementation by co-developing it with the future end-users. In the first six months of PARADIGM, we worked on a literature review to gain insights on existing tools, indicators and the like, leading to a preliminary framework that conceptualizes the (observable) outcomes and impact for medicines development across the lifecycle. Furthermore, we explored what constitutes value of patient engagement for all parties involved, and how this can be measured; what are appropriate and feasible indicators, what is the return on engagement? In parallel, we started to collect examples of patient engagement practices from within and outside the PARADIGM consortium. We concluded these efforts by organising a workshop, kindly hosted by the Association of the British Pharmaceutical Industry (ABPI) in London, where participants provided valuable input on how to best present and categorise the results of the literature review and how we should approach which examples of existing patient engagement practices. We are now embarking on, first, the retrospective analysis of examples of patient engagement practices based on the preliminary framework together with the respective partners. We will apply, test and refine the framework by evaluating the examples. Second, we will apply the improved framework to prospective cases and use it to help the stakeholders enhance the value and impact of the engagement. This will lead us to produce two distinct, but interrelated products for all parties: 1) a tailor-made advice on how valuable impact can be reached in their own context 2) an accompanying evaluation framework that can be used by everyone who wants to enrich good quality engagement practices and improve the value and impact for all involved. We strongly believe that the co-creation of this actionable framework will greatly support the cultural shift that is needed to move the needle towards greater patient engagement in medicines R&D