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Objectives: The objective was to identify and describe the published guidance and current academic discourse of ethical issues and standards related to the use of Social Media Research for generating patient insights for the use by health technology assessment (HTA) or health policy decisions. Methods: A scoping review of the literature was conducted in PubMed and Embase and identified 935 potential references published between January 2017 and June 2021. After title and abstract screening by three reviewers, 40 publications were included, the relevant information was extracted and data were collected in a mind map, which was then used to structure the output of the review. Results: Social Media Research may reveal new insights of relevance to HTA or health policies into patient needs, patient experiences, or patient behaviors. However, the research approaches, methods, data use, interpretation, and communication may expose those who post the data in social media channels to risks and potential harms relating to privacy, anonymity/confidentiality, authenticity, context, and rapidly changing technologies. Conclusions: An actively engaged approach to ensuring ethical innocuousness is recommended that carefully follows best practices throughout planning, conduct, and communication of the research. Throughout the process and as a follow-up, there should be a discourse with the ethical experts to maximally protect the current and future users of social media, to support their trust in the research, and to advance the knowledge in parallel to the advancement of the media themselves, the technologies, and the research tools. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this initiative was to examine collaboratively, in a multi-stakeholder team (health technology assessment (HTA) practitioners with patient involvement expertise, health technology industry, patient advocates, health policy experts, patient engagement experts), whether evidence generated through social media research (SMR) fills current information gaps relating to insights on specific aspects of patient experiences, preferences, or patient needs and delivers additional value to HTA. Methods: The framing of the project was done in a co-creative, deliberative multi-stakeholder process. Challenge and refinement happened through discussions with 25 independent stakeholders from HTA bodies, industry, academia, and patient advocacy. For critical themes identified during the framing phase, scoping literature reviews were performed including the state of methods and examples for the use of SMR in HTA. Results: The framing and stakeholder discussions specified a set of expectations and requirements, and the scoping reviews revealed the current state of methods and usage of SMR in health-policy decision making. Conclusions: The project concluded that SMR can contribute new, relevant evidence to HTA. It is however recommended to evolve the science through defining best practices when planning, conducting, and using SMR and to conduct multi-stakeholder pilot SMR projects to address questions relevant to current HTAs and to validate and improve the proposed practices. [ABSTRACT FROM AUTHOR]

Health technology assessment (HTA) agencies vary in their use of quantitative patient preference data (PP) and the extent to which they have formalized this use in their guidelines. Based on the authors' knowledge of the literature, we identified six different PP "use cases" that integrate PP into HTA in five different ways: through endpoint selection, clinical benefit rating, predicting uptake, input into economic evaluation, and a means to weight all HTA criteria. Five types of insight are distinguished across the use cases: understanding what matters to patients, predicting patient choices, estimating the utility generated by treatment benefits, estimating the willingness to pay for treatment benefits, and informing distributional considerations. Summarizing the literature on these use cases, we recommend circumstances in which PP can add value to HTA and the further research and guidance that is required to support the integration of PP in HTA. Where HTA places more emphasis on clinical outcomes, novel endpoints are available; or where there are already many treatment options, PP can add value by helping decision makers to understand what matters to patients. Where uptake is uncertain, PP can be used to estimate uptake probability. Where indication-specific utility functions are required or where existing utility measures fail to capture the value of treatments, PP can be used to generate or supplement existing utility estimates. Where patients are paying out of pocket, PP can be used to estimate willingness to pay. [ABSTRACT FROM AUTHOR]

Introduction: The number of patient preference studies in health has increased dramatically. There is growing use of patient preferences in a wide variety of contexts, including health technology assessment. Patient preference studies can help inform decision makers on the needs and priorities of patients and the tradeoffs they are willing to make about health technologies. Methods: This International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Task Force included international experts, health preference researchers and others from diverse backgrounds, including regulatory, health technology assessment, medicine, patient advocacy, and the pharmaceutical industry. The report underwent two rounds of written reviews by ISPOR Preferences Special Interest Group members until a final consensus was reached. The Task Force focused on developing a roadmap that would: (i) apply to the wide variety of preference methods, (ii) identify key domains to guide researchers and other stakeholders in making patient preference studies more useful to decision makers, and (iii) detail important questions to guide researchers conducting preference studies and those critically appraising them. Results: This Task Force report provides a novel roadmap that invites patient-preference researchers to work with decision makers, patients and other stakeholders to do even more to ensure that studies are useful and impactful. The ISPOR Roadmap consists of five key elements: (i) Context; (ii) Purpose; (iii) Population; (iv) Method; and (v) Impact. In this report, we define these five elements and provide good practices on how patient-preference researchers can actively contribute to increasing the usefulness and impact of patient preference studies in decision-making. We also present a set of key questions that can support researchers and other stakeholders in assessing efforts that promote preference studies' intended and unintended impact. Conclusions: This roadmap can help increase the usefulness and impact of patient preference studies in decision-making by challenging researchers to engage and partner with decision makers, patients and others, and together consider the intended and unintended impacts of patient preference studies on decision-making while actively fostering positive impact. [ABSTRACT FROM AUTHOR]

Background: There is no consensus on the effect of gestational diabetes mellitus (GDM) on health-related quality of life (HRQOL) for the mother in the short or long term. In this study we examined HRQOL in a group of women who had GDM in the index pregnancy 2 to 5 years previously and compared it to a group of women with normal glucose tolerance (NGT) in the index pregnancy during the same time period.Methods: The sample included 234 women who met International Association of Diabetes Study Groups (IADPSG) criteria for GDM in the index pregnancy and 108 who had NGT. The sample was drawn from the ATLATIC-DIP (Diabetes In Pregnancy) cohort - a network of antenatal centers along the Irish Atlantic seaboard serving a population of approximately 500,000 people. HRQOL was measured using the visual analogue component of the EQ-5D-3 L instrument in a cross-sectional survey.Results: The difference in HRQOL between GDM and NGT groups was not significant when adjusted for the effects of the covariates. HRQOL was negatively affected by increased BMI and abnormal glucose tolerance post-partum in the NGT group. Moderate alcohol consumption was positively associated with HRQOL in the NGT group only. The negative association with smoking on HRQOL was substantially higher in the GDM group.Conclusions: A diagnosis of GDM does not appear to have an adverse effect on HRQOL, 2 to 5 years after the index pregnancy. On the contrary, its diagnosis might lead to the development of coping strategies, which, consequently attenuates the adverse effect of the subsequent acquisition of abnormal glucose tolerance post-partum on HRQOL. Women whose pregnancy was affected by GDM are more susceptible to the adverse effects on HRQOL of alcohol use and tobacco smoking. [ABSTRACT FROM AUTHOR]

Objective: This qualitative study examined the healthy lifestyle behaviours undertaken during and after a pregnancy complicated by gestational diabetes mellitus (GDM) and the factors that influenced the likelihood of undertaking of such behaviours. Methods: Semi-structured telephone interviews were conducted with women who had a pregnancy complicated by GDM in the previous 3-7 years. Interviews were analysed using a theoretical thematic analysis approach. Results: Thirteen women provided interviews as part of this study. Women typically engaged in healthy behaviours in terms of diet, physical activity and glucose monitoring during their GDM pregnancy, but generally these behaviours were not maintained postpartum. Women appear not to be intrinsically motivated to engage in healthy lifestyle behaviours, but rather require the support of an extrinsic motivator such as their unborn child or the support of healthcare professionals. A gap exists between women's knowledge of their increased longterm diabetes risk and the behaviours which they undertake to reduce this risk in the postpartum period. Conclusion: Women with previous GDM need increased support in the postpartum period to assist them to develop self-management and prioritisation skills to take control of their increased type 2 diabetes mellitus risk. [ABSTRACT FROM AUTHOR]

Background: The existence of quasi-formal and informal payments in the Ukrainian health care system jeopardizes equity and creates barriers to access to proper care. Patient payment policies that better match patient preferences are necessary. We analyze the potential and feasibility of official patient charges for public health care services in Ukraine by studying the patterns of fee acceptability, ability and willingness to pay (WTP) for public health care among population groups. Methods: We use contingent valuation data collected from 303 respondents representative of the adult Ukrainian population. Three decision points were separated: objection to pay, inability to pay, and level of positive non-zero WTP. These decisions were studied for relations with quality profiles of the services, and socio-demographic characteristics of the respondents and their households. Results: The likelihood to object to pay is mostly determined by the quality characteristics of the services. Objection to pay is not related to corresponding behavior in real life. The likelihood of being unable to pay is associated with older age, lower income, and a larger share of household members with no income. The level of positive WTP is positively related to income (+7% per 1000 UAH increase in income) and is lower for people who visited a doctor but did not pay (-22%). Conclusions: Rather substantial WTP levels (between 0.9% and 1.9% of household income) for one visit to physician indicate a potential for official patient charges in Ukraine. User fees may cover a substantial share of personnel cost in the out-patient sector. The patterns of inability to pay support well designed exemption criteria based on age, income, and other aspects of economic status. The WTP patterns highlight the necessity for payments that are proportional to income. Other methodological and policy implications are discussed. [ABSTRACT FROM AUTHOR]

BACKGROUND: People living with diabetes (PLD) have special needs which could be effectively and efficiently addressed at the stage of pharmaceutical care. We analyzed preferences of PLD in Kyiv for services that could be potentially implemented in a specialized pharmacy. METHODS: We used a discrete choice experiment (DCE) to elicit preferences for pharmacist's consultation, possibility of testing, and the availability of special products. The pharmacy was described with 3 attributes having 2 levels and 2 attributes having 3 levels. The analysis is based on interviews with 98 PLD. Respondents were recruited either in the in-patient unit of Kyiv endocrinology center or through snow-ball approach between January 2012 and March 2012. The DCE part consisted of 12 choice tasks (orthogonal fractional factorial design). To reduce the number of choices per respondent, the DCE was split into two experiments of 6 choices each. Respondents were randomly assigned to either DCE. Logistic regression xtlogit was used to model DCE responses using STATA version 11.0. RESULTS: Pharmacist's consultation regarding the use of drugs, their compatibility, and special diet was the most important choice factor among PLD (marginal willingness to pay (MWTP) was 23.38 UAH), followed by the possibility of controlling the blood pressure, blood sugar and cholesterol levels, (MWTP is 21.68 UAH) and the availability of specialized products (MWTP is 13.57 UAH). Time for purchase (including travel and waiting) did not significantly affect the choice of pharmacy. CONCLUSIONS: Respondents gave mostly meaningful answers to the DCE and the model is theoretically valid. PLD are willing to spend time on traveling to the specialized pharmacy with Good Pharmacy Practice services. Conclusively, introduction of the pharmacy with special focus on PLD has good potential in Kyiv as they are ready to spend additional time and money to obtain proper services. [ABSTRACT FROM AUTHOR]

BACKGROUND. Reforming healthcare system in Ukraine would imply changing financial mechanisms and involving patients into copayment for physician services. Therefore, it is important to understand patients' willingness to pay (WTP) and its main drivers. This study aims to investigate patients' willingness to pay for physician services at a primary contact, its levels and determinants. METHODS. Contingent valuation method was applied to a nationally representative sample of 303 adult respondents surveyed in 2009. Respondents stated their willingness to pay for a visit to four hypothetical physicians, whose profiles were designed in a way to estimate separate effects of physician's specialization and joint improvement in three quality-related attributes of a service: the state of medical equipment, maintenance of the physician's office, and reduction in waiting time. A random effect tobit regression was applied to model effect of these service characteristics and socio-demographic characteristics on WTP. RESULTS. The strongest predictors (insensitive to model specifications) associated with higher WTP for physician services were quality improvements in the three characteristics of the physician's profile, higher income, and presence of private insurance policy, while the one associated with reduced WTP was age over 70. Consultation with a medical specialist instead of a general practitioner was also associated with higher WTP, though the magnitude of effect was much lower than for the abovementioned factors. CONCLUSIONS. Ukrainians are willing to pay for physician services at a primary contact, but the highest WTP would be expected for services of improved clinical and social quality and access. There might be an intention in the society or some of its groups to avoid the gatekeeper general practitioner at a primary level and to refer directly to the medical specialist. Finally, if patient payments are introduced, special caution should be taken with regards to exemption mechanisms, and age should be the main exemption criterion. [ABSTRACT FROM AUTHOR]

Aims: To examine the clinical outcomes of screening for gestational diabetes mellitus (GDM) in primary care versus secondary care, in the Irish healthcare system.Design and Methods: A parallel group randomised controlled trial (RCT) of screening for GDM in primary versus secondary care was used to examine (i) prevalence, (ii) gestational week of screen, (iii) time to access specialist care, and (iv) maternal and neonatal outcomes. In total 781 women were recruited for screening in primary care (n=391) or secondary care (n=390).Results: The prevalence of GDM and gestational week of screen were similar in both locations. There was a trend towards a longer time to access diabetes care in primary care (24days) versus secondary care (19days), a difference of 5days (p=0.09). Women screened in primary care also showed a trend towards a higher rate of large for gestational age (LGA) infants (20%) than those screened in secondary care (14.7%), (p=0.09). There were no differences between groups in maternal outcomes.Conclusions: This RCT suggests that screening for GDM in secondary care may be associated with potentially faster time to access specialist antenatal diabetes care and possibly lower LGA rates. Further research is needed to clarify these findings and to improve the delay in accessing specialist care requires an urgent focus. Further research is needed to test these findings in other health systems. [ABSTRACT FROM AUTHOR]

Aims: To examine the clinical outcomes of screening for gestational diabetes mellitus (GDM) in primary care versus secondary care, in the Irish healthcare system., Design and Methods: A parallel group randomised controlled trial (RCT) of screening for GDM in primary versus secondary care was used to examine (i) prevalence, (ii) gestational week of screen, (iii) time to access specialist care, and (iv) maternal and neonatal outcomes. In total 781 women were recruited for screening in primary care (n=391) or secondary care (n=390)., Results: The prevalence of GDM and gestational week of screen were similar in both locations. There was a trend towards a longer time to access diabetes care in primary care (24days) versus secondary care (19days), a difference of 5days (p=0.09). Women screened in primary care also showed a trend towards a higher rate of large for gestational age (LGA) infants (20%) than those screened in secondary care (14.7%), (p=0.09). There were no differences between groups in maternal outcomes., Conclusions: This RCT suggests that screening for GDM in secondary care may be associated with potentially faster time to access specialist antenatal diabetes care and possibly lower LGA rates. Further research is needed to clarify these findings and to improve the delay in accessing specialist care requires an urgent focus. Further research is needed to test these findings in other health systems., (Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.)