Patient-Patient Centered Outcomes Research最新文献

{"title":"A Systematic Literature Review of Preference Studies in Migraine Treatments.","authors":"Divya Mohan, Harrison Clarke, Natasha Ramachandran, Jaein Seo","doi":"10.1007/s40271-025-00768-0","DOIUrl":"https://doi.org/10.1007/s40271-025-00768-0","url":null,"abstract":"<p><strong>Background: </strong>Migraine care is often suboptimal owing to undertreatment, variation in clinical outcomes and administration methods among existing treatments, and between- and within-individual heterogeneity in the clinical course of migraine. In response to these challenges, preference studies have been increasingly conducted to inform treatment decision-making and development. However, gaps remain in understanding how treatment preferences have been assessed across different migraine studies.</p><p><strong>Objective: </strong>The aim was to synthesize existing evidence to inform the design and conduct of future preference migraine research. This review examined treatment attributes included in preference studies, focusing on how attributes were developed, framed, and presented; how their values were analyzed and reported; and whether these values differed by respondent characteristics.</p><p><strong>Methods: </strong>A systematic review protocol was registered with the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42025614690). Embase, MEDLINE, and the Cochrane Library were searched for relevant stated preference studies on migraine treatments (October 2024). Two researchers independently screened studies, and data were extracted using a predefined template. Extracted information included study characteristics, methods for attribute and instrument development, choice task design, attribute framing, and analytical approaches. Narrative synthesis and descriptive statistics were used to summarize findings. Attribute importance was assessed by deriving relative rankings of attributes from marginal utilities or importance scores across studies.</p><p><strong>Results: </strong>Overall, 18 studies were reviewed from the 186 that were screened. Stated preference methods comprised discrete choice experiment (n = 12), conjoint analysis (n = 1), contingent valuation method (n = 3), thresholding (n = 1), and time trade-off (n = 1). In total, 13 studies reported their attribute development methods, using literature review only (n = 2), expert consultation only (n = 1), and multi-method approaches combining literature reviews with qualitative research and/or expert or payer consultation (n = 10). In addition, 17 studies included at least 1 benefit attribute, resulting in 26 unique attributes grouped into seven overarching concepts. Risk attributes were included in 11 studies, with injection site reactions (n = 5), gastrointestinal effects (n = 4), and cognitive effects (n = 3) as the most common adverse events. Administration-related attributes appeared in ten studies, with mode and/or frequency of administration being the most common (n = 10). Eight studies used visual aids to illustrate attributes. Preference heterogeneity was explored in 14 studies, primarily on the basis of sex (n = 9), monthly migraine days (n = 8), and treatment experience (n = 7).</p><p><strong>Conclusions: </strong>This review reveals substa","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-09-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145024781","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Evaluation Tools for Patient and Public Involvement (PPI) in Health Research: A Scoping Review.","authors":"Signe Nissen, Anne Wettergren Karlsson, Birgitte Nørgaard","doi":"10.1007/s40271-025-00765-3","DOIUrl":"https://doi.org/10.1007/s40271-025-00765-3","url":null,"abstract":"<p><strong>Background: </strong>Patient and public involvement (PPI) is crucial for aligning research with public needs, reducing research waste, and enhancing the relevance and quality of evidence. Evaluating PPI is necessary to ensure its effectiveness. However, despite its recognised importance, researchers have reported a lack of robust tools for evaluating PPI systematically. To clarify which tools are used to evaluate PPI in health research, we conducted a scoping review.</p><p><strong>Objective: </strong>We aimed to identify and map evaluation tools that have been used in empirical health research studies to assess PPI, and to describe reported outcomes related to PPI.</p><p><strong>Methods: </strong>A scoping review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines. A comprehensive search was undertaken in MEDLINE, Embase, CINAHL and Scopus to identify studies published between 2021 and 2024 describing evaluation tools for PPI in health research contexts. Studies evaluating PPI were included, irrespectively of tool validation. Study selection and data charting were guided by principles from structured extraction frameworks and results were synthesised descriptively and narratively.</p><p><strong>Results: </strong>Thirty studies were included. Positive personal outcomes for PPI partners were reported, including increased well-being and skill development. Despite the existence of robust validated evaluation tools, many were adapted or developed de novo. An 'us vs them' dynamic was noted, reflecting differing engagement levels between PPI partners and researchers during evaluations. The need for additional training for both PPI partners and researchers to enhance collaboration was a recurring theme.</p><p><strong>Conclusions: </strong>Patient and public involvement evaluation tools are often developed or adapted to fit specific contexts, with multiple methods used for assessment. Challenges include low researcher response rates in evaluations and the need for better researcher preparedness for PPI.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-09-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145001917","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Do Patients Think it's Worth Waiting for a Kidney? Evidence from a Discrete-Choice Experiment.","authors":"Ching-Heng Wu, Shelby D Reed, Jui-Chen Yang, Sanjay Mehrotra, Lisa McElroy, Juan Marcos Gonzalez","doi":"10.1007/s40271-025-00763-5","DOIUrl":"https://doi.org/10.1007/s40271-025-00763-5","url":null,"abstract":"<p><strong>Objective: </strong>Nearly 30% of kidneys from deceased donors are discarded annually in the USA. A recent study indicated that a significant number of patients would accept lower-quality kidneys to avoid long waits. We expand on previous work to assess how the distribution of patient preferences for lower-quality kidneys would change with patient time on the transplant list.</p><p><strong>Methods: </strong>We conducted a discrete-choice experiment with US pre-transplant patients waitlisted for kidneys from deceased donors. Respondents were asked to evaluate tradeoffs between expected graft survival and waiting time. We used a logit-based regression with patient covariates to explain membership of three patient-preference phenotypes previously identified with these data. Specifically, we tested the degree to which phenotype membership changed with waiting time and how such changes were moderated by observable patient characteristics such as age, insulin use, recipient function, time on dialysis, and household income.</p><p><strong>Results: </strong>Waiting time had a nonlinear effect on phenotype probabilities, with more patients expected to be willing to accept lower-quality kidneys as waiting time increases. Patients with longer insulin dependence, lower income, and limited function were more likely to accept lower-quality kidneys. Higher income was significantly associated with the probability of being willing to wait for better future kidneys. Dialysis time had no significant effect.</p><p><strong>Conclusions: </strong>Our analysis provides insights into time-varying effects using cross-sectional data. Results suggest that patient preferences for organ acceptability vary with waiting time and are moderated by health status and socioeconomic factors. Longer waits and worse health statuses were generally associated with greater willingness to accept lower-quality kidneys.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-09-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144994378","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Incorporating Best-Worst Scaling (BWS) Questions into Focus Groups to Improve Understanding of Patient Preferences and Refine BWS Attributes.","authors":"Deborah A Marshall, Karen V MacDonald, Nitya Suryaprakash, Raza M Mirza, Maida J Sewitch, Geoffrey C Nguyen","doi":"10.1007/s40271-025-00736-8","DOIUrl":"10.1007/s40271-025-00736-8","url":null,"abstract":"<p><strong>Background and objective: </strong>Best-worst scaling (BWS) is a stated preference elicitation method used for prioritizing attributes of healthcare interventions. Best-worst scaling attribute development is commonly based on literature review, qualitative work, and methodological/clinical expert input. There is limited research incorporating BWS in focus groups as part of the attribute development process. We sought to explore how incorporating BWS questions using the list of potential attributes in focus groups could be used to improve understanding of patient preferences and refine the list of potential BWS attributes as part of the attribute development process.</p><p><strong>Methods: </strong>We administered BWS questions on healthcare priorities for inflammatory bowel disease in five focus groups with Canadian patients with inflammatory bowel disease to (1) understand the \"what,\" \"how,\" and \"why\" of participant choices and (2) note how participants understand the attributes and the language they use to refine the list of potential BWS attributes. A list of 20 potential attributes was used to generate the BWS questions. We coded most/least important choices (\"what\") and used a thematic analysis to derive subthemes indicating \"how\" and \"why\" participants made their choices. We coded how participants understood the attributes/BWS questions and language used when discussing the attributes.</p><p><strong>Results: </strong>Across the 36 participants, the most frequently chosen most/least important attributes were summarized. Three subthemes explaining the \"how\" and \"why\" of participant choices were identified: perceived gain; influence of individual experiences; current health state and personal circumstances. Participants identified challenges understanding specific attributes and BWS questions, and provided suggestions for modifications to attribute language/descriptions. Administering BWS questions in focus groups provided: (1) insight into the assumptions participants made when completing the BWS questions; (2) clarity in language and attribute descriptions, and challenges participants had when completing the BWS questions that can be used to refine the list of potential attributes as part of the attribute development process; and (3) understanding of which attributes were most/least important and why to identify potential attributes to remove during the next steps of the attribute development process.</p><p><strong>Conclusions: </strong>Best-worst scaling questions conducted within focus groups can stimulate discussions around relative importance and prioritization of attributes. Through open dialogue, this method can unveil unforeseen responses or identify areas that are unclear and enable a transparent approach to refine the list of potential attributes as part of the attribute development process.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"481-493"},"PeriodicalIF":3.1,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143634594","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patients' Experiences of Atopic Dermatitis and Nemolizumab Treatment: An In-Trial Interview Study Embedded in a Phase 3 Clinical Trial (ARCADIA).","authors":"Jonathan I Silverberg, Dina Filipenko, Carla Dias Barbosa, Danielle Rodriguez, Olivier Chambenoit, Katrin Jack, Christophe Piketty, Ram Subramanian, Jorge Puelles","doi":"10.1007/s40271-025-00741-x","DOIUrl":"10.1007/s40271-025-00741-x","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Patients with atopic dermatitis (AD) often experience a multitude of interrelated symptoms and impacts linked to the cardinal symptom of itch. Individual patient-reported outcome measures do not on their own reflect the complex physical and psychosocial burden experienced by patients with AD. This manuscript describes a qualitative in-trial interview substudy embedded in a phase 3 trial of nemolizumab in adults and adolescents with moderate-to-severe AD (ClinicalTrials.gov NCT03985943) and supplements evidence gathered during the core clinical trial.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;Clinical trial participants enrolled at sites in Canada, Australia, Great Britain, and the USA were invited to the substudy. They participated in blinded telephone interviews within 2 weeks of treatment completion. Interviews were conducted in English using a semi-structured interview guide. They explored participants' experiences of AD symptoms and impacts pre-trial and during the trial. Deidentified interview transcripts were coded and analyzed deductively following a content analysis approach. The interview sample was described using sociodemographic and key clinical trial data.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;A total of 73 participants reported 40 pre-trial symptoms, 10 of which affected more than half of the participants. Itch was simultaneously the most common pre-trial symptom and the symptom most commonly perceived as burdensome. Other common burdensome pre-trial symptoms were peeling/flaky/scaly skin (n = 9/43; 21%), skin redness (n = 8/43; 19%), painful skin and dry skin (n = 6/43; 14 % each), and burning sensation (n = 5/43; 12%). Itch was reported by 18% (n = 13/73) of participants to have caused other symptoms, and by a further 12% (n = 9/73) to have impacted their sleep. Participants reported 45 AD-related impact concepts across 6 health-related quality of life domains. Sleep disturbance (n = 20/52; 38%), emotions (n = 14/52; 27%), and daily activities (n = 12/52; 23%) were most often reported as being the most burdensome impact domains. More nemolizumab-than placebo-treated participants reported improvement of the 10 most common pre-trial AD symptoms and all 6 impact domains. More nemolizumab-than placebo-treated participants reported that the treatment helped manage their condition (n = 37/46; 80% versus n = 15/27; 56%), met their expectations (n = 32/46; 70% versus n = 15/27; 56%), and that they would recommend it to others (n = 41/46; 89% versus n = 20/27; 74%).&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;This qualitative study captures the heterogeneous symptoms and impacts of AD and highlights the perceived interrelatedness of itch and other AD symptoms and impacts. Our results show that alleviation of itch via targeted treatment may also reduce the complex physical and psychosocial burden of patients with moderate-to-severe AD, underscoring nemolizumab's potential as a valuable addition to existing AD treatments.&lt;/p&gt;&lt;p&gt;&lt;stro","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"511-521"},"PeriodicalIF":3.1,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12408785/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144059293","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Systematic Review of Discrete Choice Experiments on Preferences for COVID-19 Vaccinations.","authors":"Eva-Lotta Hinzpeter, Nadja Kairies-Schwarz, Charlotte Beaudart, Jonathan Douxfils, Dweeti Nayak, Mickaël Hiligsmann","doi":"10.1007/s40271-025-00753-7","DOIUrl":"10.1007/s40271-025-00753-7","url":null,"abstract":"<p><strong>Background and objective: </strong>The COVID-19 pandemic has significantly influenced vaccination strategies and public health policies. Discrete choice experiments have emerged as a valuable tool for understanding preferences regarding vaccination. This study systematically reviews discrete choice experiments conducted on COVID-19 public vaccination preferences to identify key determinants influencing vaccine uptake and to assess methodological approaches used in these studies.</p><p><strong>Methods: </strong>A systematic literature search was conducted across major databases, including PubMed, Scopus, and Web of Science, to identify discrete choice experiments focusing on COVID-19 vaccination preferences up to 31 December, 2024. Attribute categorization into five dimensions Outcome, Process, Cost, Trust, and Framing was performed and quality appraised according to the DIRECT checklist. Conditional relative importance as well as geographical differences were assessed.</p><p><strong>Results: </strong>The review identified 58 studies employing discrete choice experiments that assessed public COVID-19 vaccine preferences. Among attribute categories, outcome-related factors were the most frequently used and had the highest relative importance. Other commonly evaluated attributes included cost, origin/brand, and required doses. A notable geographic disparity was observed, with studies being unevenly distributed across different regions. Methodological heterogeneity was observed in attribute selection and experimental design.</p><p><strong>Conclusions: </strong>This review emphasizes the importance of considering individual preferences into vaccination strategies to enhance uptake, particularly in preparation for future pandemics. The findings reveal that vaccine effectiveness and safety are key concerns for individuals. Future research could focus on increasing representation of underexamined regions in preference studies to better inform local policymakers in developing effective vaccination programs for future health crises.</p><p><strong>Clinical trial registration: </strong>This review was prospectively registered in PROSPERO (International Prospective Register of Systematic Reviews) with the ID CRD42025543234.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"461-480"},"PeriodicalIF":3.1,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12408791/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144602205","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Preferences for the Use of Artificial Intelligence for Breast Cancer Screening in Australia: A Discrete Choice Experiment.","authors":"Maame Esi Woode, Udeni De Silva Perera, Chris Degeling, Yves Saint James Aquino, Nehmat Houssami, Stacy M Carter, Gang Chen","doi":"10.1007/s40271-025-00742-w","DOIUrl":"10.1007/s40271-025-00742-w","url":null,"abstract":"<p><strong>Background: </strong>Breast cancer screening is considered an effective early detection strategy. Artificial intelligence (AI) may both offer benefits and create risks for breast screening programmes. To use AI in health screening services, the views and expectations of consumers are critical. This study examined the preferences of Australian women regarding AI use in breast cancer screening and the impact of information on preferences using discrete choice experiments.</p><p><strong>Methods: </strong>The experiment presented two alternative screening services based on seven attributes (reading method, screening sensitivity, screening specificity, time between screening and receiving results, supporting evidence, fair representation, and who should be held accountable) to 2063 women aged between 40 and 74 years recruited from an online panel. Participants were randomised into two arms. Both received standard information on AI use in breast screening, but one arm received additional information on its potential benefits. Preferences for hypothetical breast cancer screening services were modelled using a random parameter logit model. Relative attribute importance and uptake rates were estimated.</p><p><strong>Results: </strong>Participants preferred mixed reading (radiologist + AI system) over the other two reading methods. They showed a strong preference for fewer missed cases with a high attribute relative importance. Fewer false positives and a shorter waiting time for results were also preferred. Strength of preferences for mixed reading was significantly higher compared to two radiologists when additional information on AI is provided, highlighting the impact of information.</p><p><strong>Conclusions: </strong>This study revealed the preferences among Australian women for the use of AI-driven breast cancer screening services. Results generally suggest women are open to their mammograms being read by both a radiologist and an AI-based system under certain conditions.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"495-510"},"PeriodicalIF":3.1,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12408650/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144056649","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Putting the Choice in Choice Tasks: Incorporating Preference Elicitation Tasks in Health Preference Research.","authors":"Jennifer A Whitty, Emily Lancsar, Richard De Abreu Lourenco, Kirsten Howard, Elly A Stolk","doi":"10.1007/s40271-024-00696-5","DOIUrl":"10.1007/s40271-024-00696-5","url":null,"abstract":"<p><p>Choice-based preference elicitation methods such as the discrete choice experiment (DCE) present hypothetical choices to respondents, with an expectation that these hypothetical choices accurately reflect a 'real world' health-related decision context and that consequently the choice data can be held to be a true representation of the respondent's health or treatment preferences. For this to be the case, careful consideration needs to be given to the format of the choice task in a choice experiment. The overarching aim of this paper is to highlight important aspects to consider when designing and 'setting up' the choice tasks to be presented to respondents in a DCE. This includes the importance of considering the potential impact of format (e.g. choice context, choice set presentation and size) as well as choice set content (e.g. labelled and unlabelled choice sets and inclusion of reference alternatives) and choice questions (stated choice versus additional questions designed to explore complete preference orders) on the preference estimates that are elicited from studies. We endeavoure to instil a holistic approach to choice task design that considers format alongside content, experimental design and analysis.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"415-423"},"PeriodicalIF":3.1,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140923688","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications.","authors":"Trishna Bharadia, Jan Geissler, Rosie Robson, Lucie Laštíková, Laura D Porter, Grace Richmond, Ben Johnson, Louise Roch, Dikran Toroser","doi":"10.1007/s40271-025-00750-w","DOIUrl":"10.1007/s40271-025-00750-w","url":null,"abstract":"<p><p>Partnerships between patients and the medical research community are strengthening. Patient involvement in research processes through collaborative workstreams provides authentic insights and perspectives, enhances trust between stakeholders and the patient community, brings balance to authorship groups and adds value and contextualisation to publications. Here, patient advocates, representatives from patient and caregiver communities and pharmaceutical and medical communications professionals propose seven actions to advance patient authorship and collaboration in peer-reviewed publications. Drawing on research, personal experience and professional insight, they call for a shift in conventional publication development practices-from seeking reasons to include patient authors to requiring justification for their exclusion-thereby facilitating greater inclusion and representation of the patient voice. The authors advocate moving beyond the concept of 'patient-centricity' towards 'patient partnership' to reflect a collaborative approach and more equitable balance of power and benefits among stakeholders. They also emphasise the importance of involving patients holistically in publication steering committees to ensure that the publication landscape includes patient perspectives and represents lived experiences. Continued facilitation and strengthening of partnerships between patient and non-patient authors is noted as essential for improving communication, understanding and equity within authorship groups. To support the visibility and recognition of patient authors, they recommend the use of the 'patient author' affiliation metatag to better identify, search, filter and standardise publications with patient involvement, identify patient authors and help build an evidence base from which best practice and guidance can be developed. Additionally, the authors highlight the need to consider and develop guidance around compensation of patient authors to acknowledge the contribution and time commitments across the research process and enable greater diversity, equity and inclusion. Finally, they stress the importance of extending the reach of publications to wider audiences through enhanced accessibility formats and open access.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"403-414"},"PeriodicalIF":3.1,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12408705/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144555602","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Engaging Underserved Populations in Health Preference Research: Challenges and Strategies.","authors":"Paula Sinead Donnelly, Divya Mohan, Hannah Penton, Emily Wilson, Marco Boeri","doi":"10.1007/s40271-025-00745-7","DOIUrl":"10.1007/s40271-025-00745-7","url":null,"abstract":"<p><p>Health preference research plays a critical role in shaping healthcare policy and decision-making; however the underrepresentation of underserved populations challenges the validity and reliability of preference estimates. Despite efforts to diversify recruitment, health preference studies often have limited demographic diversity and non-representative sampling, leading to potentially biased findings that overlook the preferences of underserved populations. We discuss the importance of engaging underserved populations in health preference research from both ethical and research perspectives. We identify key challenges to the inclusion of underserved groups and outline strategies to address them, illustrating these with examples where possible. By prioritising inclusive and flexible methodologies, health preference researchers can generate more representative data, ensuring that estimates reflect the diverse needs and values of all populations. Ultimately, these efforts will support the development of more equitable, evidence-based, and impactful healthcare policies.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"443-459"},"PeriodicalIF":3.1,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144200768","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}