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There are compelling ethical and practical reasons for patient engagement in research (PEIR), however, evidence for best practices remains limited. We investigated PEIR as implemented in CAPTURE ALS, a longitudinal observational study, from study inception through the first 2.5 years of operations. Data were drawn from three engagement initiatives: a community-led letter-writing campaign; consultation with patient and caregiver focus groups; and a study-embedded 'participant partner advisory council' (PPAC). Data were derived retrospectively from study documentation. We used the International Association of Public Participation (IAP2) participation spectrum as a framework for investigation. 2401 letters from community members to the Canadian government affirmed study objectives and advocated for funding. Feedback from focus group consultation influenced study design and supported the study's data-sharing plan. PPAC collaboration shaped all aspects of the study. Contributions included: co-creation of governance documents, input on study protocols and public-facing communication, and development of engagement webinars for study participants and feedback surveys. Effective communication practices fostered collaboration and helped avoid tokenistic engagement. CAPTURE ALS encompassed all IAP2 participation levels. CAPTURE ALS was shaped by meaningful engagement initiatives over the course of the study. Lessons learned included: begin early and embed PEIR within research; build relationships and foster mutual learning; be flexible, open to adaptation, and seek diversity. Primary challenges included funding for early implementation, time needed to maintain relationships, and attrition due to disease progression. All IAP2 participation levels contributed to meaningful PEIR. 'Empowerment' was demonstrated through advocacy. [ABSTRACT FROM AUTHOR]

Expert consensus guidelines recommend referral of people with amyotrophic lateral sclerosis (ALS) to ALS health charities for support. Limited research indicates that patients and families value interaction with these volunteer sector organizations. We investigated how patient support from Canadian ALS health charities (ALS Societies) is experienced by those affected by ALS, and whether patient-centered outcomes validate recommendations for referral. Data were drawn from the ALS Talk Project, an asynchronous online focus group study. Patients and family caregivers were recruited from regions across Canada. Seven groups met online for 14 weeks between January and July 2020. Seventy-eight participants made statements about ALS Societies. Data were qualitatively analyzed using directed content analysis and the constant-comparative approach. Participants viewed ALS Societies as integral to the healthcare system. The Societies acted as patient navigators and filled perceived care gaps, including psychological support. They provided critical practical assistance, particularly equipment loans and peer support groups; comprehensive disease-related and real-life information; and personal connections. They facilitated knowledge of research, emerging therapies, and research opportunities. Delayed referral to ALS Society supports and information resources was a concern for some participants. ALS Societies provide patients with critical practical, informational, and emotional support and play an overarching role as patient/research navigators. Patient-centred outcomes support patient referral to ALS Societies. Communication about the services provided should be a standard component of clinical care, with choice of access left to individuals. Clinical conversations should be supplemented with information resources developed by these voluntary sector organizations. [ABSTRACT FROM AUTHOR]

This investigation examines perceptions of normality emerging from two distinct studies of information behavior associated with life disrupting health symptoms and theorizes the search for normality in the context of sense making theory. Study I explored the experiences of women striving to make sense of symptoms associated with menopause; Study II examined posts from two online discussion groups for people with symptoms of obsessive compulsive disorder. Joint data analysis demonstrates that normality was initially perceived as the absence of illness. A breakdown in perceived normality because of disruptive symptoms created gaps and discontinuities in understanding. As participants interacted with information about the experiences of health-challenged peers, socially constructed notions of normality emerged. This was internalized as a 'new normal.' Findings demonstrate normality as an element of sense making that changes and develops over time, and experiential information and social contexts as central to health-related sense making. Re-establishing perceptions of normality, as experienced by health-challenged peers, was an important element of sense making. This investigation provides nuanced insight into notions of normality, extends understanding of social processes involved in sense making, and represents the first theorizing of and model development for normality within the information science and sense making literature. [ABSTRACT FROM AUTHOR]

Introduction. Potential risks to human health from environmental factors are a source of significant public concern. Moreover, the internet has transformed traditional health communication and increased public awareness of and concern for exiting, emerging and speculative environmental health (EH) issues. This paper is a work in progress. Its objective is to scan and evaluate the everyday information contexts that influence and incubate public views related to environmental health risk in Canada. Method. A two part environmental scan is being conducted; oral presentation will focus on phase one. (1) Telephone interviews were conducted with representatives of environmental civil society organizations to explore their role in the public discourse related to environmental health. A modified convergent approach is being used. And (2) environmental health as represented on government and civil society organization websites will be evaluated. Analysis. Facilitated by NVivo 8TM, results are being inductively analyzed using directed content analysis and grounded theory's constant comparative approach. NVivo 8TM facilitated analysis. Results. Preliminary results suggest civil society organizations are involved in synthesizing and communicating environmental health information gathered from a wide range of formal and informal sources. These organizations occupy important between spaces, providing information to and collaborating with the pubic, other groups and decision/policy-makers in government. Conclusions. Phase one demonstrates that civil society organizations make an important contribution to public environmental health discourse as information providers and collaborators. Interviews will provide a strong foundation for further investigation. [ABSTRACT FROM AUTHOR]

Introduction. This study explored how information mediated by formal (health professionals) and informal (family, friends and others) interpersonal relationships is used and made valuable for personal health management. Findings draw on women's experiences as they responded to, made sense of and used uncertain and evolving health information. Method. Semi-structured interviews with 28 women were conducted using narrative and elicitation approaches. Findings were illuminated by interviews with 12 health professionals. Investigations were rooted in a social constructionist approach and an active, process-oriented view of information seeking. Analysis. Findings were inductively analyzed using directed content analysis and grounded theory's constant comparative approach. NVivo 8TM facilitated analysis. Results. Interpersonal face-to-face interactions provided important opportunities for constructive processes. Meaning and plans for action were created between people; narratives and story-telling helped participants construct sense from their experiences and information seeking. Formal interpersonal contacts were valued for expert medical knowledge; trust and collaborative communication styles mediated participants' confidence in and use of health information from professionals. Sex and gender played a role in women's perception of clinician communication styles. The experiential and biomedical knowledge of informal interpersonal contacts was important to participants; women viewed their experiences through the lens of their mothers' health experiences. Conclusions. Findings situated interpersonal information behaviours as a critical means of constructing meaning and facilitating health management decisions. The study supports channel complementarity theory and has implications for patient-clinician relationships and for relational dimensions mediated by other information environments. [ABSTRACT FROM AUTHOR]