Samantha J. Kaplan

Diagnosis of life-threatening alpha-gal food allergy appears to be patient driven

Objective: Patients exhibiting life-threatening symptoms associated with the alpha-gal food allergy (delayed urticaria or anaphylaxis due to mammalian meat) are frequently undiagnosed, causing unnecessary emergency department (ED) and health care visits, and extensive pain and suffering. This study aimed to determine the path to diagnosis experienced by alpha-gal patients. Methods: Semistructured interviews were conducted from March to June 2016 with a chronological systematic sample of approximately 10% of patients diagnosed with alpha-gal and treated by the University of North Carolina Allergy and Immunology Clinic (n = 28). Main outcome measures included average length of time between first symptoms’ appearance and diagnosis, number and type of health care encounters en route to diagnosis, and typical symptom severity. Results: Six interviewees (21%) were diagnosed within a year of experiencing symptoms, of the remaining 22, mean time to diagnosis was 7.1 years. In over 100 medical encounters (including 28 ED visits and 2 urgent care) the correct diagnosis or effective diagnosing referral occurred less than 10% of the time. Seventy-one percent (20/28) described their first symptoms as severe. More patients found the allergist specializing in this condition on their own (n = 12; 43%) than those who were formally diagnosed or received referrals (n = 10; 36%) through the health care system. Conclusions: The medical community is challenged to stay abreast of emerging and newly uncovered illnesses through traditional medical literature communication channels. Presently, patients more often discover a diagnosis of alpha-gal allergy by using information resources on their own than by presenting to the ED with anaphylaxis.

Health information: print materials assessment in public libraries

Purpose The purpose this study was to determine currency of print health materials readily available in North Carolina public libraries, through a statewide assessment. Two subject areas were examined: health reference and diabetes. Design/methodology/approach In total, 30 randomly selected public libraries were visited and unobtrusive stacks assessments were completed. Some months later, the libraries’ websites were examined for collection development policies, and online catalogs were searched using the keyword diabetes to identify possible discrepancies and additions. Findings For visits, publication dates for reference books ranged from 1899-2014 and the average number of holdings was 10 (range 0-30). The most common reference item, the AMA Family Medical Guide (2005), was available in 6 of 30 libraries. In diabetes collections, publication dates ranged from 1983-2013; the average number of books was nine (range 0-26). The Atkins Diabetes Revolution (2004) was the most common, available in 9 of 30 libraries. Two-thirds of libraries did not have a collection development policy online. Catalog searches revealed 10 titles prior to 1983 and 18 titles (non-cook books) from 2014-2016. Practical implications The study found overall that print health reference books were outdated. In diabetes collections, there were also many outdated items. It appears that regular weeding to assure currency of print health literature is not taking place. Originality/value The study demonstrates that public libraries may not be providing optimal print health information. With unprecedented access, it is imperative that librarians in all types of settings aid in health literacy promotion by assuring access to reliable and timely health information.

Patients’ Health Information Practices and Perceptions of Provider Knowledge in the Case of the Newly Discovered Alpha-gal Food Allergy:

Background: Alpha-gal food allergy is a life-threatening, newly discovered condition with limited presence in authoritative information sources. Sufferers seeking diagnosis are likely to encounter clinicians unfamiliar with the condition. Objective: To understand information practices of individuals diagnosed with alpha-gal allergy, how they obtained diagnosis, and their perceptions of health-care providers’ awareness of the condition. Methods: Semistructured interviews with open- and closed-ended questions were completed with a chronological systematic sample of 28 adults (11% of alpha-gal clinic patients at the time) diagnosed with alpha-gal allergy and treated at University of North Carolina Allergy and Immunology Clinic. Results: The majority of patients determined they had alpha-gal allergy through nontraditional health information channels. Three-quarters of patients rated their primary care provider as having little to no knowledge. In 25 specialists’ encounters, 23 were rated as having little to no knowledge. Conclusion: With new conditions, information is often available through informal networks before appearing in the vetted medical literature. In this study, social connections were the primary pathway to successful diagnosis. Health practitioners need to develop mechanisms to understand that process.

Incorporating Values Sensitive Design into Crowdsourcing Methodologies for Knowledge Collaboration: Incorporating values sensitive design into crowdsourcing methodologies for knowledge collaboration

In recent years, we have seen a dramatic increase in crowdsourcing approaches to solve problems and engage in other types of knowledge work in many domains, including genetics, health, cultural heritage, digital preservation and design. Crowdsourcing initiatives offer many potential benefits, including engaging individuals of diverse backgrounds in collaborative meaning‐making and production. And yet, the potential challenges and dangers, such as issues related to quality and false confidence, can hardly escape our attention. This panel will explore how human‐centered approaches to crowdsourcing can help minimize its challenges. In particular, this panel will ask how we implement crowdsourcing methods, what our outcomes should be, and how we should go about developing and defining our outcomes in relationship to the workers. The first half of the session will be devoted to an introduction to crowdsourcing initiatives and associated critical issues. Each presentation will drill progressively deeper into the mechanisms and implications of crowdsourcing. In the second half of the session, we invite session attendees to engage with us in a collaborative activity employing techniques from the value sensitive design approach to design crowdsourcing initiatives that are sensitive to the communities with whom we engage and thereby endeavor to realize humanistic goals. It is our hope that the panel session will result in new collaborations and spark the development of more thoughtful, reflexive and productive crowdsourcing activities.

A Survey of Information Source Preferences of Parents of Individuals with Autism Spectrum Disorder

For parents of children with an Autism spectrum disorder (ASD), high quality, easily accessible information and a strong peer network can be the key to raising a happy, healthy child, and maintaining family well-being and emotional resilience. This article reports the findings of an anonymous survey examining the information source preferences for 935 parents of individuals with ASDs in North Carolina. Data indicates that parents show similar information seeking patterns across the age spectrum, that availability of information (as indicated by overall information source selection) decrease as children age. It also shows that parents rely heavily on local sources of information, preferring them to nonlocal sources (such as the internet) for many types of information.

A constant conversation: tuning into and harmonizing the needs and priorities of the body and mind

ABSTRACT Purpose: Individuals rely upon many types of information to manage an illness, including information provided by their own bodies. This study investigated how people tune into and manage the flow of information from their bodies to manage their health. Method: We developed a platform for participants to share and collaboratively reflect on how they engaged in this dialogic process, in which participants contributed to a discussion on topics relating to body listening and body awareness. Though the study was open to anyone interested in or wanting to contribute to knowledge on “body listening,” the social media recruitment focused on chronic conditions requiring self-care and having overlapping symptomatology, with chronic pain as the primary characteristic. A qualitative analysis method based on grounded theory was used to analyse the data. Results: Six main themes emerged: learning the language, recognizing and heeding limits, experiencing emotional fatigue and despair, regulating the channel, moving from conflict to communication, and settling into an uneasy acceptance. Conclusion: The monitoring and filtering of information from one’s body, and the appeasement of conflicting demands and voices, is difficult work. Knowledge of this process can be used in patient education and in the development of tools to support body listening.

A family like ours: demographic variations in information seeking behavior and community participation among parents of individuals with Autism Spectrum Disorder (ASD)

We surveyed 906 parents of individuals with Autism/Autism Spectrum Disorder (ASD) about their information seeking experiences and preferred information sources. Our findings suggest that the most popular information sources are local doctors, therapists, national organization websites and local parent networks.