Do you hear us? Elevating the voice of patients from Asia Pacific (AP) and Middle East (ME) in pharmaceutical research.

e18519 Background: Incorporating patient (pt) perspectives in the development of new therapies (from trial design to regulatory & reimbursement decisions) and providing pts with plain language summaries (PLS) of clinical trial results is increasingly important to minimise knowledge and experience disparities. One model to facilitate this in pharmaceutical research is via Patient Expert Panels (PEPs). Aim: To assess the feasibility & impact of PEPs consisting of members from AP&ME on the development of 1. PLS of data presented at ESMO and ASH 2020 for selected Novartis-sponsored clinical trials 2. Disease education material for sickle cell disease (SCD). Methods: Thematic analysis of meeting minutes from PEPs conducted between Sep – Dec 2020 was performed. Data relating to meeting duration were extracted. The responses from an 8-item survey of PEP members were analysed descriptively for 6 items, thematically for 2. Results: Five virtual PEPs were conducted, with a median duration of 60 mins [range 60-120]. In total, 9 PLS were reviewed (8 breast cancer, 1 CML) & 1 SCD education booklet. Five common themes emerged regarding the input & impact of the PEP [Table]. 88% panelists responded they “Definitely will” participate in future PEPs, thereby confirming their feasibility, with the following quote being representative of the panelists’ experience & impact “I appreciated how our input as patients was valued and highly taken into consideration. It felt like our time and feedback was important to everyone.” Conclusions: PEP constituted of pts from countries in AP&ME are feasible and lead to impactful improvements in the development of PLS and disease education information. Given pt advocates in these countries are volunteers from organisations with limited resources, have diverse backgrounds in terms of culture, language & disease awareness, their input is more representative of a broader pt population. As a result, the final versions of the reviewed documents were more inclusive & accessible. [Table: see text]

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The Electoral Fortunes of Taiwan's Green Party: 1996–2012

Japanese Journal of Political Science ◽

10.1017/s1468109915000390 ◽

2016 ◽

Vol 17 (1) ◽

pp. 63-83 ◽

Cited By ~ 3

Author(s):

DAFYDD FELL ◽

YEN-WEN PENG

Keyword(s):

Focus Group ◽

Western Europe ◽

Environmental Politics ◽

Asia Pacific ◽

Limited Resources ◽

Green Party ◽

Party Leaders ◽

Legislative Yuan ◽

Election Results ◽

Depth Interviews

AbstractThe Green Party Taiwan (GPT) represents an important case both for scholars of environmental politics but also Taiwanese politics. Established in 1996, it is the oldest Asian green party and is one of the most active parties in the Asia-Pacific Greens network. The party has enjoyed mixed electoral fortunes. After promising early election results, the GPT virtually ceased contesting elections between 2000 and 2005. However, from 2006 the party began a gradual revival in its vote shares. This process culminated in the January 2012 Legislative Yuan election when the GPT surprised many observers by coming fifth in the proportional party vote. Considering the limited resources at the party's disposal this was quite an achievement. In this study, we examine and explain the changing electoral fortunes of the GPT since its establishment in 1996. We are interested to see whether standard theories for explaining small or ecological party success, that have been developed in western Europe, work well in the Taiwan context. Our research is based on a range of new fieldwork conducted between 2012 and 2014. These include in-depth interviews with campaigners and party leaders, focus group sessions with party leaders and candidates, and interviews with party supporters.

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Navigating the Terrain of Diversity

Gender and Diversity Issues in Religious-Based Institutions and Organizations ◽

10.4018/978-1-4666-8772-1.ch011 ◽

2016 ◽

pp. 248-268

Author(s):

Moses Rumano ◽

Rhoda Sommers

Keyword(s):

Higher Education ◽

Work Environment ◽

Professional Growth ◽

Strong Support ◽

Religious Institutions ◽

Institutions Of Higher Education ◽

The Social ◽

Diverse Backgrounds ◽

The Voice ◽

Academic Lives

In this chapter the authors suggest that religious institutions are strategically and morally positioned to advocate for the inclusion of faculty from diverse backgrounds who will become the voice of the voiceless and the ambassadors for many historically oppressed and underrepresented groups in higher education. The successful integration of faculty from diverse backgrounds at predominantly European American religious institutions of higher education brings the much needed transformation into the social, spiritual, and academic lives of students. Through the lived experiences of six faculty members from diverse backgrounds serving at a variety of religious institutions, the authors discuss ways religious institutions of higher education can advocate for faculty from diverse backgrounds by adopting distinctive policies and beliefs, creating a strong support base through mentorship, and providing opportunities for professional growth to create a welcoming work environment.

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Open Pharma recommendations for plain language summaries of peer-reviewed medical journal publications

10.31222/osf.io/c3m8q ◽

2021 ◽

Author(s):

Adeline Rosenberg ◽

Slávka Baróniková ◽

Linda Feighery ◽

William Gattrell ◽

Rikke Egelund Olsen ◽

...

Keyword(s):

Medical Journal ◽

Medical Research ◽

Healthcare Professionals ◽

Pharmaceutical Research ◽

Shared Decision ◽

Plain Language ◽

Minimum Standard ◽

Plain Text ◽

Patient Advocates ◽

Medical Publishing

Plain language summaries of peer-reviewed publications are intended for everyone engaging with medical research, such as patients, patient advocates, caregivers, healthcare professionals, and policymakers. These summaries encourage discussions around medical research and aid fully informed and shared decision-making. The broad range of stakeholders involved in pharmaceutical research now puts the pharmaceutical industry in a unique position to make the medical publishing model more open. We believe that the next step of openness is to create a more accessible and inclusive environment through the routine development of plain language summaries of peer-reviewed medical journal publications.There are many formats of plain language summaries, but plain text is the most discoverable through indexing in directories such as PubMed. Standardizing the minimum steps for the development and sharing of index-friendly plain language summaries can help promote the quality and credibility of these lay communications. The aim of a minimum standard is to build a universal foundation that encourages the accessibility, discoverability, and inclusivity of plain language summaries. This standard can then serve as a basis for summaries written for a more specific target audience or that include graphically and digitally enhanced formats that increase understanding and engagement, which we strongly encourage.

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4349 Survey of Regulatory Reforms to Address Comprehension of Clinical Trial Results

Journal of Clinical and Translational Science ◽

10.1017/cts.2020.350 ◽

2020 ◽

Vol 4 (s1) ◽

pp. 115-115

Author(s):

Matthieu Kirkland ◽

Christian Reyes ◽

Nancy Pire-Smerkanich ◽

Eunjoo Pacifici

Keyword(s):

Clinical Trial ◽

Natural Language Processing ◽

Natural Language ◽

Clinical Research ◽

Language Processing ◽

Reading Level ◽

Medical Community ◽

European Medicines Agency ◽

Plain Language ◽

Clinical Trial Results

OBJECTIVES/GOALS: Clinical research is the backbone of the medical community. However, there are few regulations to ensure clinical trial participants can understand their results, leading to volunteers feeling unvalued and unlikely to enroll in trials1. This study examines the need of lay summaries METHODS/STUDY POPULATION: To understand the current landscape of clinical trial summaries, literature searches were conducted using the University of Southern California Library database with keywords Title contains “lay language” OR “lay summary” AND any field contains “Trial” OR “clinical”, and Title contains “natural language processing” AND “clinical trial” OR “Summary”. Studies were deemed relevant if they discussed lay language summaries for health care realms or using Natural Language Processing (NLP) to increase comprehension. Papers published by the Center for Information and Study on Clinical Research Participation (CISCRP) were reviewed and their Associate Director was interviewed. RESULTS/ANTICIPATED RESULTS: Of 67 total results, 14 were determined to be relevant. Ten of the relevant results examined lay language summaries and their regulation and 4 were NLP studies. The European Medicines Agency set regulations mandating clinical trial summaries. However, researchers have difficulty validating to an appropriate reading level2. Difficulty and potential bias halted a U.S. mandate of lay summaries3. The nonprofit CISCRP has partnered with industry to develop unbiased clinical trial summaries resulting in all volunteers feeling appreciated and 91% understanding clinical trial results post summary1. Similarly, NLP software for annotating Electronic Health Records increased comprehension for 77% of patients4. DISCUSSION/SIGNIFICANCE OF IMPACT: In the U.S., a lack of regulations mandating lay summaries may be related to concerns by regulatory agencies that summaries in plain language may introduce bias3. Future looks into integration of NLP systems to clinical trials may create unbiased summaries and allow for FDA regulation.

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K-pop boot camps in choreographic co-creative labor

Global Media and China ◽

10.1177/2059436420974935 ◽

2020 ◽

Vol 5 (4) ◽

pp. 372-388

Author(s):

Kai Khiun Liew ◽

Angela Lee

Keyword(s):

Popular Music ◽

Consumer Demand ◽

Asia Pacific ◽

Pacific Region ◽

Asia Pacific Region ◽

Free Labor ◽

Boot Camps ◽

South Korean ◽

Diverse Backgrounds

The worldwide popularity of South Korean popular music has generated global consumer demand for variations of its grueling training regimen offered by talent recruitment agencies and dance studios. Using the case study of the South Korean popular music boot camps offered by the Australia-based agency, The Academy, this article seeks to frame these performative engagements along more cosmopolitan notions of choreographic co-creative labor. In contrast to the highly competitive South Korean popular music machinery, participation in these boot camps can be characterized as affective prosumer “free labor” from trainees from diverse backgrounds, abilities, and motivations. Through programs that enable trainees to “re-present,” “re-organize,” and “re-interpret” K-pop dance performances, studios like The Academy leverage on K-pop’s popularity and its training pedagogies so as to open new fields of creative labor. Accompanying such openings are the strengthening transnational connectivities in the activities of The Academy in intensifying existing multicultural networks in Australia. The studio is also part of a more cosmopolitan platform in orienting traditionally Eurocentric mainstream Australia culturally toward the Asia-Pacific region. By further democratizing the dance abilities of K-pop choreographies, initiatives like The Academy serve in enlarging creative labor in transnational rhythmic communities.

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Active Community-Based Case Finding for Tuberculosis With Limited Resources

Asia Pacific Journal of Public Health ◽

10.1177/1010539516683497 ◽

2016 ◽

Vol 29 (1) ◽

pp. 17-27 ◽

Cited By ~ 7

Author(s):

Bindu Karki ◽

Guenter Kittel ◽

Ignatius Bolokon ◽

Trevor Duke

Keyword(s):

Papua New Guinea ◽

Low Cost ◽

New Guinea ◽

Case Finding ◽

Asia Pacific ◽

Limited Resources ◽

Smear Microscopy ◽

Source Population ◽

Community Based ◽

Adults And Children

Papua New Guinea is one of the 14 highest-burden countries for tuberculosis (TB) infection, but few community-based studies exist. We evaluated a low-cost method of active community case finding in Kabwum and Wasu in Morobe Province, Papua New Guinea. Over 3 months we visited 26 villages and screened adults and children for symptoms and signs of TB. Sputum samples were examined using smear microscopy. A total of 1700 people had chronic symptoms, of which 267 were suspicious for TB on further examination. Sputum from 230 symptomatic adults yielded 97 samples that were positive for acid-fast bacilli. In addition, 15 cases of extrapulmonary TB in adults and 17 cases of TB in children were identified. One hundred and thirty people were identified with active TB disease among the source population of approximately 17 000, giving an estimated prevalence of 765 per 100 000. One hundred and six (82%) cases were not previously diagnosed. The cost per case identified was US$146. It is feasible to conduct active community-based case finding and treatment initiation for TB with limited resources and in remote areas, and in Papua New Guinea the yield was high. Active case finding and follow-up of treatment in villages is needed to address the hidden burden of TB in Papua New Guinea and other high-burden Asia Pacific countries.

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Management of a giant euthyroid goiter in limited resources settings: case report

International Journal of Otorhinolaryngology and Head and Neck Surgery ◽

10.18203/issn.2454-5929.ijohns20200638 ◽

2020 ◽

Vol 6 (3) ◽

pp. 574

Author(s):

Nzanzu Kikuhe ◽

Munyatwari Akomu ◽

Sekabuhoro Safari ◽

Tsongo Vululi Sosthene ◽

Justine Namwagala

Keyword(s):

Multinodular Goiter ◽

Limited Resources ◽

Regional Referral Hospital ◽

Cervical Mass ◽

Patient Reported ◽

History Of ◽

One Year ◽

Clinical Conditions ◽

The Voice

<p class="abstract">The cases of giant multinodular goiter are rare clinical conditions nowadays. We present here a case of giant multinodular goiter successfully treated at Hôpital Provincial du Nord Kivu (Regional referral hospital and Goma teaching hospital). A 59 years old man with 40 years’ history of gradual growing of an anterior cervical mass. The patient reported compressive symptoms such difficulty in breathing, hoarseness of the voice and difficulty in swallowing during the last nine months prior to our consultation. A total thyroidectomy was performed as well as a one year of follow-up, showing good evolution.</p>

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Hardware/Software Co-Design for TinyML Voice-Recognition Application on Resource Frugal Edge Devices

Applied Sciences ◽

10.3390/app112211073 ◽

2021 ◽

Vol 11 (22) ◽

pp. 11073

Author(s):

Jisu Kwon ◽

Daejin Park

Keyword(s):

Integrated Circuit ◽

Voice Recognition ◽

Limited Resources ◽

Energy Costs ◽

Machine Learning Applications ◽

Audio Data ◽

Microcontroller Unit ◽

Time And Energy ◽

The Voice ◽

The Internet Of Things

On-device artificial intelligence has attracted attention globally, and attempts to combine the internet of things and TinyML (machine learning) applications are increasing. Although most edge devices have limited resources, time and energy costs are important when running TinyML applications. In this paper, we propose a structure in which the part that preprocesses externally input data in the TinyML application is distributed to the hardware. These processes are performed using software in the microcontroller unit of an edge device. Furthermore, resistor–transistor logic, which perform not only windowing using the Hann function, but also acquire audio raw data, is added to the inter-integrated circuit sound module that collects audio data in the voice-recognition application. As a result of the experiment, the windowing function was excluded from the TinyML application of the embedded board. When the length of the hardware-implemented Hann window is 80 and the quantization degree is 2−5, the exclusion causes a decrease in the execution time of the front-end function and energy consumption by 8.06% and 3.27%, respectively.

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