Utilising Patient and Public Involvement in Stated Preference Research in Health: Learning from the Existing Literature and a Case Study.
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ABSTRACT:
SUBMITTER: Shields GE
PROVIDER: S-EPMC8205869 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Discrete choice experiments (DCE), conjoint analysis (CA), and best-worst scaling (BWS) are quantitative techniques for estimating consumer preferences for products or services. These methods are increasingly used in healthcare research, but their applications within the field of HIV research have not yet been described. The objective of this scoping review was to systematically map the extent and nature of published DCE, CA, and BWS studies in the field of HIV and identify priority areas where these methods can be used in the future. Online databases were searched to identify published HIV-related DCE, CA and BWS studies in any country and year as the primary outcome. After screening 1,496 citations, 57 studies were identified that were conducted in 26 countries from 2000-2017. The frequency of published studies increased over time and covered HIV themes relating to prevention (n = 25), counselling and testing (n = 10), service delivery (n = 10), and antiretroviral therapy (n = 12). Most studies were DCEs (63%) followed by CA (37%) and BWS (4%). The median [IQR] sample size was 288 [138-496] participants, and 74% of studies used primary qualitative data to develop attributes. Only 30% of studies were conducted in sub-Saharan Africa where the burden of HIV is highest. Moreover, few studies surveyed key populations including men who have sex with men, transgender people, pregnant and postpartum women, adolescents, and people who inject drugs. These populations represent priorities for future stated-preference research. This scoping review can help researchers, policy makers, program implementers, and health economists to better understand the various applications of stated-preference research methods in the field of HIV.
| S-EPMC6821403 | biostudies-literature
Project description:ObjectiveTo investigate public willingness to share sensitive health information for research, health policy and clinical practice.MethodsA total of 1,003 Australian respondents answered an online, attribute-driven, survey in which participants were asked to accept or reject hypothetical choice sets based on a willingness to share their health data for research and frontline-medical support as part of an integrated health system. The survey consisted of 5 attributes: Stakeholder access for analysis (Analysing group); Type of information collected; Purpose of data collection; Information governance; and Anticipated benefit; the results of which were analysed using logistic regression.ResultsWhen asked about their preference for sharing their health data, respondents had no preference between data collection for the purposes of clinical practice, health policy or research, with a slight preference for having government organisations manage, govern and curate the integrated datasets from which the analysis was being conducted. The least preferred option was for personal health records to be integrated with insurance records or for their data collected by privately owned corporate organisations. Individuals preferred their data to be analysed by a public healthcare provider or government staff and expressed a dislike for any private company involvement.ConclusionsThe findings from this study suggest that Australian consumers prefer to share their health data when there is government oversight, and have concerns about sharing their anonymised health data for clinical practice, health policy or research purposes unless clarity is provided pertaining to its intended purpose, limitations of use and restrictions to access. Similar findings have been observed in the limited set of existing international studies utilising a stated preference approach. Evident from this study, and supported by national and international research, is that the establishment and preservation of a social license for data linkage in health research will require routine public engagement as a result of continuously evolving technological advancements and fluctuating risk tolerance. Without more work to understand and address stakeholder concerns, consumers risk being reluctant to participate in data-sharing and linkage programmes.
| S-EPMC10653479 | biostudies-literature
Project description:BackgroundIn the United Kingdom, healthcare data is collected on all patients receiving National Health Service (NHS) care, including children and young people (CYP) with cancer. This data is used to inform service delivery, and with special permissions used for research. The use of routinely collected health data in research is an advancing field with huge potential benefit, particularly in CYP with cancer where case numbers are small and the impact across the life course can be significant. Patient and public involvement (PPI) exercise aims: Identify current barriers to trust relating to the use of healthcare data for research. Determine ways to increase public and patient confidence in the use of healthcare data in research. Define areas of research importance to CYP and their carers using healthcare data.MethodsYoung people currently aged between 16 and 25 years who had a cancer diagnosis before the age of 20 years and carers of a young person with cancer were invited to take part via social media and existing networks of service users. Data was collected during two interactive online workshops totalling 5 h and comprising of presentations from health data experts, case-studies and group discussions. With participant consent the workshops were recorded, transcribed verbatim and analysed using thematic analysis.ResultsTen young people and six carers attended workshop one. Four young people and four carers returned for workshop two. Lack of awareness of how data is used, and negative media reporting were seen as the main causes of mistrust. Better communication and education on how data is used were felt to be important to improving public confidence. Participants want the ability to have control over their own data use. Late effects, social and education outcomes and research on rare tumours were described as key research priorities for data use.ConclusionsIn order to improve public and patient trust in our use of data for research, we need to improve communication about how data is used and the benefits that arise.
| S-EPMC10466824 | biostudies-literature
Project description:Background:Patient and Public Involvement (PPI) in research is a growing field of work, incorporating experiential knowledge within research processes. Co-production is a more recent PPI approach that emphasises the importance of power-sharing to promote inclusive research practices, valuing and respecting knowledge from different sources, and relationship building. Applying co-production principles in research trials can be difficult, and there are few detailed worked examples or toolkits. This paper explores the successes and challenges encountered by one research team. Methods:Our paper is written by a team of 21 people working on PARTNERS2, led by a smaller co-ordinating group. Using a co-operative style inquiry, the authors have reflected on and written about their experiences; analysis of the resulting 15 accounts provided examples of how PPI and co-production were delivered in practice. Results:We reveal varied and complicated experiences as we developed our collaborative approach across the entire research programme. Four main themes emerge from reflective accounts which describe aspects of this process: (1) recognising the importance of 'emotional work'; (2) developing safe spaces to create and share knowledge; (3) some challenges of using our personal identities in research work; and (4) acknowledging power-sharing within the research hierarchy. We also found continual relationship building, how different forms of expertise were valued, and stigma were central to shaping what work was possible together. Other important practices were transparency, particularly over decision making, and clear communication. Conclusions:Our work provides one example of the 'messy' nature of collaborative research in practice. The learning we surface was contextual, generated within a large-scale research programme, but applicable to other studies. We found for success there needs to be an acknowledgement of the importance of emotional work, creating safe spaces to co-produce, transparency in decision making and reflection on the difficulties of using personal identities in research work including for service user researchers. These elements are more important than existing guidelines suggest. Implementation of actions to support emotional work, will require changes within individual teams as well as institutions. Introducing reflective practice in teams may be helpful in identifying further improvements to inclusive research practice.
| S-EPMC7507647 | biostudies-literature
Project description:IntroductionPatient and public involvement (PPI) in research emphasizes the importance of doing research with, rather than for people with lived health/illness experience(s). The purpose of this scoping review is to investigate the breadth and depth of scientific literature on PPI in cancer research and to identify how is PPI applied and reported in cancer research.MethodsWe searched MEDLINE, Embase, CINAHL, and PsycInfo up to March 2022. All titles/abstracts and full-text results were screened by two reviewers. Data were analyzed and are presented in both narrative and tabular format.ResultsWe screened 22,009 titles/abstract, reviewed 375 full-text articles, of which 101 studies were included in this review. 66 papers applied PPI; 35 used co-design methodologies. PPI in cancer research in published research has increased steadily since 2015 and often includes those with a past diagnosis of cancer or relatives/informal caregivers. The most common applied methods were workshops or interviews. PPI was generally used at the level of consultation/advisor and occurred mainly in early stages of research. Costs related to PPI were mentioned in 25 papers and four papers described training provided for PPI.ConclusionsResults of our review demonstrate the nature and extent of PPI expansion in cancer research. Researchers and research organizations entering the fray of PPI should consider planning and reporting elements such as the stage, level, and role type of PPI, as well as methods and strategies put in place to assure diversity. Furthermore, a thorough evaluation of whether all these elements meet the stated PPI purpose will help to grasp its impact on research outcomes.Patient or public contributionTwo patients participated in the stakeholder consultation as part of the scoping review methodology, contributed to the discussion on refining the results, and critically reviewed the manuscript. Both are co-authors of this manuscript.
| S-EPMC10417078 | biostudies-literature
Project description:BackgroundSmartphones are being increasingly used for research owing to their multifunctionality and flexibility, and crowdsourced research using smartphone applications (apps) is effective in the early detection and management of chronic diseases. We developed the AllerSearch app to gather real-world data on individual subjective symptoms and lifestyle factors related to hay fever. This study established a foundation for interactive research by adopting novel, diverse perspectives accrued through implementing the principles of patient and public involvement (PPI) in the development of our app.MethodsPatients and members of the public with a history or family history of hay fever were recruited from November 2019 to December 2021 through a dedicated website, social networking services, and web briefing according to the PPI Guidebook 2019 by the Japan Agency for Medical Research and Development. Nine opinion exchange meetings were held from February 2020 to December 2021 to collect opinions and suggestions for updating the app. After each meeting, interactive evaluations from PPI contributors and researchers were collected. The compiled suggestions were then incorporated into the app, establishing an active feedback loop fed by the consistently interactive infrastructure.ResultsFour PPI contributors (one man and three women) were recruited, and 93 items were added/changed in the in-app survey questionnaire in accordance with discussions from the exchange meetings. The exchange meetings emphasized an atmosphere and opportunity for participants to speak up, ensuring frequent opportunities for them to contribute to the research. In March 2020, a public website was created to display real-time outcomes of the number of participants and users' hay-fever-preventative behaviors. In August 2020, a new PPI-implemented AllerSearch app was released.ConclusionsThis study marks the first research on clinical smartphone apps for hay fever in Japan that implements PPI throughout its timeline from research and development to the publication of research results. Taking advantage of the distinct perspectives offered by PPI contributors, a step was taken toward actualizing a foundation for an interactive research environment. These results should promote future PPI research and foster the establishment of a social construct that enables PPI efforts in various fields.
| S-EPMC9437402 | biostudies-literature
Project description:Involving patients in research broadens a researcher's field of influence and may generate novel ideas. Preclinical research is integral to the progression of innovative healthcare. These are not patient-facing disciplines and implementing meaningful public and patient involvement (PPI) can be a challenge. A discussion forum and thematic analysis identified key challenges of implementing public and patient involvement for preclinical researchers. In response we developed a "PPI Ready" planning canvas. For contemporaneous evaluation of public and patient involvement, a psychometric questionnaire and an open source tool for its evaluation were developed. The questionnaire measures information, procedural and quality assessment. Combined with the open source evaluation tool, researchers are notified if public and patient involvement is unsatisfactory in any of these areas. The tool is easy to use and adapts a psychometric test into a format familiar to preclinical scientists. Designed to be used iteratively across a research project, it provides a simple reporting grade to document satisfaction trend over the research lifecycle.
| S-EPMC6516642 | biostudies-literature
Project description:BackgroundTechnology-related research on people with dementia and their carers often aims to enable people to remain living at home for longer and prevent unnecessary hospital admissions. To develop person-centered, effective, and ethical research, patient and public involvement (PPI) is necessary, although it may be perceived as more difficult with this cohort. With recent and rapid expansions in health and care-related technology, this review explored how and with what impact collaborations between researchers and stakeholders such as people with dementia and their carers have taken place.ObjectiveThis review aims to describe approaches to PPI used to date in technology-related dementia research, along with the barriers and facilitators and impact of PPI in this area.MethodsA scoping review of literature related to dementia, technology, and PPI was conducted using MEDLINE, PsycINFO, Embase, and CINAHL. Papers were screened for inclusion by 2 authors. Data were then extracted using a predesigned data extraction table by the same 2 authors. A third author supported the resolution of any conflicts at each stage. Barriers to and facilitators of undertaking PPI were then examined and themed.ResultsThe search yielded 1694 papers, with 31 (1.83%) being analyzed after screening. Most (21/31, 68%) did not make clear distinctions between activities undertaken as PPI and those undertaken by research participants, and as such, their involvement did not fit easily into the National Institute for Health and Care Research definition of PPI. Most of this mixed involvement focused on reviewing or evaluating technology prototypes. A range of approaches were described, most typically using focus groups or co-design workshops. In total, 29% (9/31) described involvement at multiple stages throughout the research cycle, sometimes with evidence of sharing decision-making power. Some (23/31, 74%) commented on barriers to or facilitators of effective PPI. The challenges identified often regarded issues of working with people with significant cognitive impairments and pressures on time and resources. Where reported, the impact of PPI was largely reported as positive, including the experiences for patient and public partners, the impact on research quality, and the learning experience it provided for researchers. Only 4 (13%) papers used formal methods for evaluating impact.ConclusionsResearchers often involve people with dementia and other stakeholders in technology research. At present, involvement is often limited in scope despite aspirations for high levels of involvement and partnership working. Involving people with dementia, their carers, and other stakeholders can have a positive impact on research, patient and public partners, and researchers. Wider reporting of methods and facilitative strategies along with more formalized methods for recording and reporting on meaningful impact would be helpful so that all those involved-researchers, patients, and other stakeholders-can learn how we can best conduct research together.
| S-EPMC10949132 | biostudies-literature
Project description:BackgroundInterest in patient and public involvement in research has grown. Medical, health, and social care research has demonstrated several benefits of patient and public engagement, such as empowering user input and reducing attrition rates in clinical trials. To date, no study has reviewed patient engagement in inflammatory bowel disease (IBD). We aimed to describe the benefits, challenges, and best practices of patient engagement in IBD research.MethodsWe performed a systematic search on MEDLINE, EMBASE, and Cochrane for all clinical IBD research studies in which patients were involved in the research process (1946- 2023). Patient input was considered in: (1) study design, (2) study execution, (3) research dissemination, and/or (4) other domains not specified here. Two authors independently screened and extracted data on type of engaged person(s), format of engagement, author-reported benefits, recommendations, and challenges. For each study, we reported the level of patient engagement and study adherence to standardized reporting guidelines.ResultsAfter screening 9,355 articles, we included 51 for final analysis. IBD patients were most frequently engaged in study design. Patient engagement in IBD research improved recruitment rates and promoted the creation of user-friendly quality-of-life tools. Selection bias and recruitment difficulties were common challenges in the application of patient engagement. Authors recommended continuous patient involvement to address emerging priorities and cognitive interviewing to improve questionnaire clarity.ConclusionsPatient engagement represents an important step in promoting patient-centred care. According to study authors, implementing cognitive interviewing techniques, continuous patient involvement, and standardized reporting guidelines may improve future iterations of engagement in IBD.
| S-EPMC10999768 | biostudies-literature
Project description:Patient and public involvement (PPI) can be used in methods research, as well as applied research, in health economics. However, methods research goals may seem quite abstract when compared to the lived experiences of lay participants. This article draws on 4 years of PPI in a research project to develop methods for including family carer outcomes in economic evaluation. Key challenges in using PPI for health economics methods research relate to (1) training and preparation, (2) maintaining involvement, and (3) selecting suitable tasks. We suggest three criteria for selecting a research task for PPI input based on task importance, professional researcher skills gap, and potential PPI contribution.
| S-EPMC7494378 | biostudies-literature