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This chapter considers the transformation of U.S. National Library of Medicine's (NLM) national network of libraries into an effective force for spreading awareness of NLM's resources, services, and tools and increasing their use. Several examples of network programs and projects are recounted to illustrate the influence of NLM's longest serving Director, Donald A.B. Lindberg M.D. on the development and evolution of NLM's library network., (© 2021 – The authors. Published by IOS Press.)

Background: Utilizing the traditional centers of excellence approach to conduct clinical trials involving rare diseases remains challenging. Patient-based registries have been shown to be both feasible and valid in several other diseases., Objective: This report outlines the clinical characteristics of a large internet registry cohort of participants with a self-reported diagnosis of granulomatosis with polyangiitis or microscopic polyangiitis., Methods: Patients with a self-reported diagnosis of granulomatosis with polyangiitis or microscopic polyangiitis in an internet-based prospective longitudinal cohort (from the Vasculitis Patient-Powered Research Network) were included. Data on symptoms, diagnostic testing, and treatment were collected using standardized questionnaires., Results: The study compared patients with granulomatosis with polyangiitis (n=762) and patients with microscopic polyangiitis (n=164). Of the cohort, 97.7% (904/925) reported the diagnosis had been confirmed by a physician. Compared to microscopic polyangiitis, patients with granulomatosis with polyangiitis reported significantly more ear, nose, and throat manifestations (granulomatosis with polyangiitis: 641/723, 88.7%; microscopic polyangiitis: 89/164, 54.3%; z=10.42, P<.001), fevers (granulomatosis with polyangiitis: 325/588, 55.3%; microscopic polyangiitis: 64/139, 46.0%; z=1.96, P=.05), joint involvement (granulomatosis with polyangiitis: 549/688, 79.8%; microscopic polyangiitis: 106/154, 68.8%; z=2.96, P=.003), and pulmonary involvement (granulomatosis with polyangiitis: 523/734, 71.3%; microscopic polyangiitis: 90/154, 58.4%; z=3.13, P=.002). Compared to microscopic polyangiitis, patients with granulomatosis with polyangiitis reported significantly less renal involvement (granulomatosis with polyangiitis: 457/743, 61.5%; microscopic polyangiitis: 135/163, 82.8%; z=-5.18, P<.001) and renal transplantation (granulomatosis with polyangiitis: 10/721, 1.4%; microscopic polyangiitis: 7/164, 4.3%; z=-2.43, P=.02). Antineutrophil cytoplasmic antibody positivity was reported in 94.2% (652/692) of patients with granulomatosis with polyangiitis and 96.1% (147/153) of patients with microscopic polyangiitis. A biopsy showing vasculitis was reported in 77.0% (562/730) of patients with granulomatosis with polyangiitis and 81.9% (131/160) of patients with microscopic polyangiitis., Conclusions: In this large, internet-based cohort of patients with a self-reported diagnosis of granulomatosis with polyangiitis or microscopic polyangiitis, disease manifestations were consistent with expectations for each type of vasculitis. Given the rarity of these and other vasculitides, conducting some types of research through internet-based registries may provide an efficient alternative to inperson, center-of-excellence clinical trials., (©Jason Michael Springer, Tanaz A Kermani, Antoine Sreih, Dianne G Shaw, Kalen Young, Cristina M Burroughs, Peter A Merkel. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 20.07.2020.)

Background: Patient-powered research networks (PPRNs) have been employing and exploring different methods to engage patients in research activities specific to their conditions. One way to intensify patient engagement is to partner with payer stakeholders. The objective of this study was to evaluate the effectiveness of two common payer-initiated outreach methods (postal mail versus email) for inviting prospective candidates to participate in their initiatives., Methods: This descriptive study linked members of a nationally-representative private insurance network to four disease-specific PPRN registries. Eligible members meeting diagnostic criteria who were not registered in any of the four PPRNs by 02/28/2018 were identified, and randomly assigned to either the mail or email group. They were contacted in two outreach efforts: first on 04/23/2018, and one follow-up on 05/23/2018. New registration rates by outreach method as of 8/31/2018 were determined by relinking. We compared registrants and non-registrants using bivariate analysis., Results: A total of 14,571 patients were assigned to the mail group, and 14,574 to the email group. Invitations were successfully delivered to 13,834 (94.9%) mail group and 10,205 (70.0%) email group members. A small but significantly larger proportion of mail group members, (n = 78; 0.54, 95% Confidence Interval [CI] {0.42-0.67%}) registered in PPRNs relative to the email group (n = 24; 0.16, 95% CI {0.11-0.25%}), p < 0.001. Members who registered had more comorbidities, were more likely to be female, and had marginally greater medical utilization, especially emergency room visits, relative to non-registrants (52.0% vs. 42.5%, p = 0.05)., Conclusion: A health plan outreach to invite members to participate in PPRNs was modestly effective. Regular mail outperformed less costly email. Providing more value-add to participants may be a possible way to increase recruitment success.

Objective: Patient-powered research networks (PPRNs) are a valuable source of patient-generated information. Diagnosis code-based algorithms developed by PPRNs can be used to query health plans' claims data to identify patients for research opportunities. Our objective was to implement privacy-preserving record linkage processes between PPRN members' and health plan enrollees' data, compare linked and nonlinked members, and measure disease-specific confirmation rates for specific health conditions., Materials and Methods: This descriptive study identified overlapping members from 4 PPRN registries and 14 health plans. Our methods for the anonymous linkage of overlapping members used secure Health Insurance Portability and Accountability Act-compliant, 1-way, cryptographic hash functions. Self-reported diagnoses by PPRN members were compared with claims-based computable phenotypes to calculate confirmation rates across varying durations of health plan coverage., Results: Data for 21 616 PPRN members were hashed. Of these, 4487 (21%) members were linked, regardless of any expected overlap with the health plans. Linked members were more likely to be female and younger than nonlinked members were. Irrespective of duration of enrollment, the confirmation rates for the breast or ovarian cancer, rheumatoid or psoriatic arthritis or psoriasis, multiple sclerosis, or vasculitis PPRNs were 72%, 50%, 75%, and 67%, increasing to 91%, 67%, 93%, and 80%, respectively, for members with ≥5 years of continuous health plan enrollment., Conclusions: This study demonstrated that PPRN membership and health plan data can be successfully linked using privacy-preserving record linkage methodology, and used to confirm self-reported diagnosis. Identifying and confirming self-reported diagnosis of members can expedite patient selection for research opportunities, shorten study recruitment timelines, and optimize costs., (© The Author(s) 2019. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

With the advent of the Internet, American Indian/Alaska Native (AI/AN) communities in the Pacific Northwest have new opportunities to access high quality and relevant health information. The Pacific Northwest Regional Medical Library (PNRML), regional headquarters of the National Network of Libraries of Medicine, a program sponsored by the National Library of Medicine, sought to facilitate that access and worked with a selected group of sixteen tribes and native village consortia. The steps were: (1) work with AI/AN communities to arrive at mutually-agreeable health information connectivity objectives and long-term solutions, (2) provide funding to AI/AN communities to ensure Internet connectivity and the presence of Internet workstations for health workers and for the public, and (3) train in effective health information seeking. Community-based approaches helped the PNRML adjust policies and practice for improved information outreach to AI/AN communities in the region. The project participants, collaborating with our staff, successfully carried out many of the community goals and, at the same time, we gained insight about the variables that were barriers or facilitators of success. While we are coming at outreach from a library perspective, the policy and method lessons we learned could apply to a broad variety of outreach endeavors.

Objectives: This paper focuses on one dimension of personal health information seeking: perception of quality and trustworthiness of information sources., Design: Intensive interviews were conducted using a conversational, unstructured, exploratory interview style., Setting: Interviews were conducted at 3 publicly accessible library sites in Arizona, Hawaii and Nevada., Participants: Thirty-eight non-experts were interviewed., Results: Three separate and distinct methods used to identify credible health information resources were identified. Consumers may have strong opinions about what they mistrust; use fairly rigorous evaluation protocols; or filter information based on intuition or common sense, eye appeal or an authoritative sounding sponsor or title., Conclusions: Many people use a mix of rational and/or intuitive criteria to assess the health information they use.

End-user search software is designed to simplify online searching for the casual searcher. User-friendly features provide relatively easy online access to remote databases without the need for expert search systems. At issue is whether the simplified features of such software compromise what is potentially retrievable, and if so, whether the missing information is critical to the end user. A study was designed to address this question, particularly as applied to clinicians using a user-friendly search software package such as Grateful Med. Clinician participants compared their Grateful Med search results with a full Elhill search (as performed by an intermediary) and indicated whether references unique to either search were or were not critical to their information needs.