Conversation for change: engaging older adults as partners in research on gerotechnology.

There is increasing research and public policy investment in the development of technologies to support healthy aging and age-friendly services in Canada. Yet adoption and use of technologies by older adults is limited and rates of abandonment remain high. In response to this, there is growing interest within the field of gerotechnology in fostering greater participation of older adults in research and design. The nature of participation ranges from passive information gathering to more active involvement in research activities, such as those informed by participatory design or participatory action research (PAR). However, participatory approaches are rare with identified barriers including ageism and ableism. This stigma contributes to the limited involvement of older adults in gerotechnology research and design, which in turn reinforces negative stereotypes, such as lack of ability and interest in technology. While the full involvement of older adults in gerotechnology remains rare, the Older Adults' Active Involvement in Ageing & Technology Research and Development (OA-INVOLVE) project aims to develop models of best practice for engaging older adults in these research projects. In this comment paper, we employ an unconventional, conversational-style format between academic researchers and older adult research contributors to provide new perspectives, understandings, and insights into: (i) motivations to engage in participatory research; (ii) understandings of roles and expectations as research contributors; (iii) challenges encountered in contributing to gerotechnology research; (iv) perceived benefits of participation; and (v) advice for academic researchers.

More investments are being made to develop technologies that support healthy aging and age-friendly services in Canada. However, not many older adults use these technologies and those who do tend to stop using them after some time. Gerotechnology is a field of study that combines an interest in gerontology and technology. Within gerotechnology, researchers are learning more about how to encourage older adults to participate in research and the design of new technologies. There are different ways that older adults participate in gerotechnology research, with some approaches being more passive than others. In participatory design and participatory action research projects older adults are encouraged to engage more actively as co-researchers. However, researchers have found that there are some limitations to engaging older adults actively in research, including ageism and ableism, meaning that older adults are perceived to be capable of contributing based on their age and cognitive or physical abilities. These stereotypes have limited how often and how much older adults actually contribute to technology research and design. The Older Adults' Active Involvement in Aging & Technology Research and Development (OA-INVOLVE) project aims to address these gaps. In this comment paper, we present a conversation between academic and older adult researchers who have contributed to OA-INVOLVE. The goal of this conversation is to explore together: (i) motivations to engage in participatory research; (ii) understandings of roles and expectations as research contributors; (iii) challenges encountered in contributing to gerotechnology research; (iv) perceived benefits of participation; and (v) advice for academic researchers.

Persons or data points? Ethics, artificial intelligence, and the participatory turn in mental health research.

This article identifies and examines a tension in mental health researchers' growing enthusiasm for the use of computational tools powered by advances in artificial intelligence and machine learning (AI/ML). Although there is increasing recognition of the value of participatory methods in science generally and in mental health research specifically, many AI/ML approaches, fueled by an ever-growing number of sensors collecting multimodal data, risk further distancing participants from research processes and rendering them as mere vectors or collections of data points. The imperatives of the "participatory turn" in mental health research may be at odds with the (often unquestioned) assumptions and data collection methods of AI/ML approaches. This article aims to show why this is a problem and how it might be addressed. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Investigating Quality of Life from the Perspectives of Older Adults in Local Communities.

Governments are increasingly interested in measuring quality of life (QoL) among older adults to inform policy. We demonstrate the advantages of situating an investigation of QoL in local contexts through a thematic analysis of focus group data collected in Chatham-Kent, Ontario, Canada. Local and broader factors relating to QoL among older adults were explored. We examine three themes: Natural Environment considers how participants derive aspects of their sense of QoL from the unique natural environment in Chatham-Kent; Amalgamation's Influence on Identity explores how participants' sense of belongingness and place-based identity were shaped by the amalgamation of townships and communities that now constitute Chatham-Kent; and Ease of Travel and Independence examines how older adults' conceptions of QoL are closely connected to their ease of travel, which they connect with a sense of independence. Our findings provide further support for the importance of engaging directly with older adults to understand their perspectives of QoL in a local context, particularly when seeking to inform policy changes.

"The Rest of my Childhood was Lost": Canadian Children and Adolescents' Experiences Navigating Inflammatory Bowel Disease.

Children and adolescents with Inflammatory Bowel Disease (IBD) face significant and unique challenges related to their condition. The aim of this study was to better understand some of these challenges, and to explore how Canadian youth respond to them. We interviewed 25 pediatric patients with IBD, ranging in age from 10-17, to find out about their illness experiences. Using a thematic analysis, we discerned three themes: challenges related to diagnosis, making sense of change, and navigating sociability. Taken together, they paint a picture of young people facing great uncertainty prior to diagnosis, pronounced changes to selfhood as they make lifestyle adjustments, and facing difficulties with the implications of reduced sociability because of their disease. We conclude by providing recommendations for the development of resources aimed at helping newly diagnosed pediatric patients navigate these issues.

Deliberation on Childhood Vaccination in Canada: Public Input on Ethical Trade-Offs in Vaccination Policy.

BACKGROUND: Policy decisions about childhood vaccination require consideration of multiple, sometimes conflicting, public health and ethical imperatives. Examples of these decisions are whether vaccination should be mandatory and, if so, whether to allow for non-medical exemptions. In this article we argue that these policy decisions go beyond typical public health mandates and therefore require democratic input. METHODS: We report on the design, implementation, and results of a deliberative public forum convened over four days in Ontario, Canada, on the topic of childhood vaccination. RESULTS: 25 participants completed all four days of deliberation and collectively developed 20 policy recommendations on issues relating to mandatory vaccinations and exemptions, communication about vaccines and vaccination, and AEFI (adverse events following immunization) compensation and reporting. Notable recommendations include unanimous support for mandatory childhood vaccination in Ontario, the need for broad educational communication about vaccination, and the development of a no-fault compensation scheme for AEFIs. There was persistent disagreement among deliberants about the form of exemptions from vaccination (conscience, religious beliefs) that should be permissible, as well as appropriate consequences if parents do not vaccinate their children. CONCLUSIONS: We conclude that conducting deliberative democratic processes on topics that are polarizing and controversial is viable and should be further developed and implemented to support democratically legitimate and trustworthy policy about childhood vaccination.

Introducing the Microbes and Social Equity Working Group: Considering the Microbial Components of Social, Environmental, and Health Justice.

Humans are inextricably linked to each other and our natural world, and microorganisms lie at the nexus of those interactions. Microorganisms form genetically flexible, taxonomically diverse, and biochemically rich communities, i.e., microbiomes that are integral to the health and development of macroorganisms, societies, and ecosystems. Yet engagement with beneficial microbiomes is dictated by access to public resources, such as nutritious food, clean water and air, safe shelter, social interactions, and effective medicine. In this way, microbiomes have sociopolitical contexts that must be considered. The Microbes and Social Equity (MSE) Working Group connects microbiology with social equity research, education, policy, and practice to understand the interplay of microorganisms, individuals, societies, and ecosystems. Here, we outline opportunities for integrating microbiology and social equity work through broadening education and training; diversifying research topics, methods, and perspectives; and advocating for evidence-based public policy that supports sustainable, equitable, and microbial wealth for all.

Layperson Views about the Design and Evaluation of Decision Aids: A Public Deliberation.

PURPOSE: We carried out the first public deliberation to elicit lay input regarding guidelines for the design and evaluation of decision aids, focusing on the example of colorectal ("colon") cancer screening. METHODS: A random, demographically stratified sample of 28 laypeople convened for 4 days, during which they were informed about key issues regarding colon cancer, screening tests, risk communication, and decision aids. Participants then deliberated in small and large group sessions about the following: 1) What information should be included in all decision aids for colon screening? 2) What risk information should be in a decision aid and how should risk information be presented? 3) What makes a screening decision a good one (reasonable or legitimate)? 4) What makes a decision aid and the advice it provides trustworthy? With the help of a trained facilitator, the deliberants formulated recommendations, and a vote was held on each to identify support and alternative views. RESULTS: Twenty-one recommendations ("deliberative conclusions") were strongly supported. Some conclusions matched current recommendations, such as that decision aids should be available for use with and without providers present (conclusions 1-4) and should support informed choice (conclusion 9). Some conclusions differed from current recommendations, at least in emphasis-for example, that decision aids should disclose cost of screening (conclusion 11) and should be kept simple and understandable (conclusion 14). Deliberants recommended that decision aids should disclose the baseline risk of getting colon cancer (conclusions 15, 17). LIMITATIONS: Single location and medical decision. CONCLUSIONS: Guidelines for design of decision aids should consider putting a greater focus on disclosing cost and keeping decision aids simple, and they possibly should recommend disclosing less extensive amounts of quantitative information than currently recommended.

Ethical implications of recruiting universal stool donors for faecal microbiota transplantation.

Faecal microbiota transplantation is an effective therapy for recurrent Clostridioides difficile infection, with potential therapeutic applications in other health conditions. As research uncovers potential associations between the intestinal microbiome and various disease states, stool donor screening has become increasingly stringent, leading to low donor acceptance. Many stool banks have opted to recruit universal stool donors, who are encouraged to donate frequently over a prolonged period and whose stool is used to treat multiple patients. However, various ethical concerns arise when recruiting universal stool donors, which need to be addressed to mitigate harm to donors. In this Personal View, we describe the major ethical issues with universal stool banks across six domains: informed consent, privacy, the imposing of restrictions on autonomy, stewardship of microbiome information, financial incentives, and preventing a sense of obligation. We also suggest several priorities for future research that should be pursued to address these crucial issues and develop more donor-centric stool banks.

Dietary strategies and food practices of pediatric patients, and their parents, living with inflammatory bowel disease: a qualitative interview study.

Purpose: A growing body of scientific evidence supports the role of food and diet in the pathogenesis and management of inflammatory bowel diseases (IBD). However, little is known about the role of food and diet from the perspectives of pediatric patients and their parents. This study aimed to explore how children and adolescents with IBD and their parents coped with the illness through food and diet in their daily lives. Methods: We conducted semi-structured interviews with 28 children and adolescents with IBD, 26 parents and one grandparent. Results: Two major themes, dietary strategies and family food practices, were identified through thematic analysis. There were three types of dietary strategies: food avoidance and moderation; following a specific diet; and healthy eating. For family food practices, two subthemes were identified: impact on grocery shopping, meal planning, and cooking; and maintaining routine and normality. Conclusions: Our findings have important implications for the clinical care of pediatric IBD. Notably, IBD not only influenced the food practices of the pediatric patients, but also their parents and other family members. Healthcare professionals should consider the family unit when giving nutritional advice or developing nutritional guidelines. Personalized nutritional counselling and ongoing nutritional assessment are also warranted.

Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada.

INTRODUCTION: Research using linked data sets can lead to new insights and discoveries that positively impact society. However, the use of linked data raises concerns relating to illegitimate use, privacy, and security (e.g., identity theft, marginalization of some groups). It is increasingly recognized that the public needs to be consulted to develop data access systems that consider both the potential benefits and risks of research. Indeed, there are examples of data sharing projects being derailed because of backlash in the absence of adequate consultation. (e.g., care.data in the UK). OBJECTIVES AND METHODS: This paper describes the results of a public deliberation event held in April 2018 in Vancouver, British Columbia. The purpose of this event was to develop informed and civic-minded public advice regarding the use and the sharing of linked data for research with a focus on the processes and regulations employed to release data. The event brought together 23 members of the public over two weekends. RESULTS: Participants developed and voted on 19 policy-relevant statements. Voting results and the rationale behind any disagreements are reported here. Taken together, these statements provide a broad view of public support and concerns regarding the use of linked data sets for research and offer guidance on measures that can be taken to improve the trustworthiness of policies and process around data sharing and use. CONCLUSIONS: Generally, participants were supportive of research using linked data because of the value they provide to society. Participants expressed a desire to see the data access request process made more efficient to facilitate more research, as long as there are adequate protections in place around security and privacy of the data.

Epistemic tensions between people living with asthma and healthcare professionals in clinical encounters.

RATIONALE: Asthma is a common respiratory condition with high prevalence rates globally. While there are effective treatments, asthma remains an important health concern as people continue to die from severe attacks. Improving the experiences of, and health outcomes for, people with asthma depends heavily on their interactions with healthcare professionals. Understanding negative clinical encounters will benefit people with asthma and healthcare providers. OBJECTIVE: To examine epistemic tensions in negative clinical encounters from a patient perspective, with an aim to better understand how patients respond to these tensions. Much of the scholarship on patient interactions with healthcare providers examines interpersonal or structural factors. Thus, focusing our analysis on tensions between lay and expert knowledge in negative clinical encounters provides a novel contribution to this body of scholarship. METHOD: As part of a larger qualitative study (n = 70) examining the lived experiences of people who have asthma or a child with asthma, semi-structured interviews with 17 participants who described having negative clinical encounters were analyzed for themes. RESULTS: Participants responded to epistemic tensions in two main ways: (1) by incorporating expert knowledge; and (2) by resisting/challenging expert knowledge. In both cases, participants also described feeling frustrated and uncertain about their or their child's clinical care. We analyze these responses by drawing on Lindström and Karlsson's (2016) conceptualization of epistemic tensions as arising from 3 characteristics of epistemic asymmetry: access, rights, and responsibility. CONCLUSION: Based on this study, (1) a patient's confidence in claiming epistemic access and asserting epistemic rights when epistemic tensions arise are related to the context and their own history of living with asthma; and (2), epistemic tensions can make visible the power relations in the patient-clinician relationship, which can lead to the exertion of biomedical authority, or the taking up of patient's lay knowledge.

Notes on the development of health psychology and behavioral medicine in the United States.

A "standard" historiographical overview of the development of health psychology in the United States, alongside behavioral medicine, first summarizes previous disciplinary and professional histories. A "historicist" approach follows, focussing on a collective biographical summary of accumulated contributions of one cohort (1967-1971) at State University of New York at Stony Brook. Foundational developments of the two areas are highlighted, contextualized within their socio-political context, as are innovative cross-boundary collaboration on "precursor" studies from the 1960s and 1970s, before the official disciplines emerged. Research pathways are traced from social psychology to health psychology and from clinical psychology to behavioral medicine.

Vaginal health and hygiene practices and product use in Canada: a national cross-sectional survey.

BACKGROUND: The vaginal microbiome influences quality of life and health. The composition of vaginal microbiota can be affected by various health behaviors, such as vaginal douching. The purpose of this study was to examine the types and prevalence of diverse vaginal/genital health and hygiene behaviors among participants living in Canada and to examine associations between behavioral practices and adverse gynecological health conditions. METHOD: An anonymous online survey, available in English and French, was distributed across Canada. The sample consisted of 1435 respondents, 18 years or older, living in Canada. RESULTS: Respondents reported engaging in diverse vaginal/genital health and hygiene behavioral practices, including the use of commercially manufactured products and homemade and naturopathic products and practices. Over 95% of respondents reported using at least one product in or around the vaginal area. Common products and practices included vaginal/genital moisturizers, anti-itch creams, feminine wipes, washes, suppositories, sprays, powders, and waxing and shaving pubic hair. The majority of the sample (80%) reported experiencing one or more adverse vaginal/genital symptom in their lifetime. Participants who had used any vaginal/genital product(s) had approximately three times higher odds of reporting an adverse health condition. Several notable associations between specific vaginal/genital health and hygiene products and adverse health conditions were identified. CONCLUSIONS: This study is the first of its kind to identify the range and prevalence of vaginal/genital health and hygiene behaviors in Canada. Despite a lack of credible information about the impact of these behaviors on women's health, the use of commercially manufactured and homemade products for vaginal/genital health and hygiene is common. Future research can extend the current exploratory study by identifying causal relationships between vaginal/genital health and hygiene behaviors and changes to the vaginal microbiome.

Children's perspectives on the benefits and burdens of research participation.

BACKGROUND: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their illness. In particular contexts, such as learning health care systems (LHS), where research and clinical care are integrated, children with chronic illnesses may be asked to participate in research related to their illness. A growing body of literature has focused on children's perspectives as research subjects; however, a relatively understudied aspect concerns children's experiences of research in clinics where they are also patients. METHODS: We interviewed 25 Canadian children and adolescents living with inflammatory bowel disease (IBD) about their experiences of research participation. RESULTS: Our participants described aspects of the research process and particular experiences as benefits and others as burdens. Benefits included helping others, receiving incentives, receiving the results of previous studies, and participating in fun activities. Burdens included the time required for particular types of research, physical and psychological discomfort, and feelings of obligation. CONCLUSIONS: Our study describes the experiences of children participating in research at a site that integrates research and clinical care. Our participants described experiences that often go unreported (such as feelings of obligation); we mention these as important considerations to be mindful of when interacting with children as (potential) research participants in an LHS and when thinking about research ethics protocols or the assent/consent process.

Human Microbiome and Learning Healthcare Systems: Integrating Research and Precision Medicine for Inflammatory Bowel Disease.

Healthcare institutions face widespread challenges of delivering high-quality and cost-effective care, while keeping up with rapid advances in biomedical knowledge and technologies. Moreover, there is increased emphasis on developing personalized or precision medicine targeted to individuals or groups of patients who share a certain biomarker signature. Learning healthcare systems (LHS) have been proposed for integration of research and clinical practice to fill major knowledge gaps, improve care, reduce healthcare costs, and provide precision care. To date, much discussion in this context has focused on the potential of human genomic data, and not yet on human microbiome data. Rapid advances in human microbiome research suggest that profiling of, and interventions on, the human microbiome can provide substantial opportunity for improved diagnosis, therapeutics, risk management, and risk stratification. In this study, we discuss a potential role for microbiome science in LHSs. We first review the key elements of LHSs, and discuss possibilities of Big Data and patient engagement. We then consider potentials and challenges of integrating human microbiome research into clinical practice as part of an LHS. With rapid growth in human microbiome research, patient-specific microbial data will begin to contribute in important ways to precision medicine. Hence, we discuss how patient-specific microbial data can help guide therapeutic decisions and identify novel effective approaches for precision care of inflammatory bowel disease. To the best of our knowledge, this expert analysis makes an original contribution with new insights poised at the emerging intersection of LHSs, microbiome science, and postgenomics medicine.

The Meanings of Helping: An Analysis of Cystic Fibrosis Patients' Reasons for Participating in Biomedical Research.

Research participants often report wanting to help as a reason for participation, but who they want to help and why is rarely explored. We examined meanings associated with helping among 21 adults with cystic fibrosis (CF)-a group with high participation in research. Meanings included helping to advance research, helping others with CF, helping as their job, helping themselves, helping because they are special, and helping to give back. While some meanings were primarily oriented toward helping others, some also involved hoping for benefits for oneself, and some included feelings of responsibility. Despite indicating that they understood that research is not designed to help them directly, participants nevertheless hoped that it might. We discuss implications for research ethics oversight.