Increasing Genomic Literacy Through National Genomic Projects

Genomics is an advancing field of medicine, science, ethics, and legislation. Keeping up to date with this challenging discipline requires continuous education and exchange of knowledge between many target groups. Specific challenges in genomic education include tailoring complex topics to diverse audiences ranging from the general public and patients to highly educated professionals. National genomic projects face many of the same challenges and thus offer many opportunities to highlight common educational strategies for improving genomic literacy. We have reviewed 41 current national genomic projects and have identified 16 projects specifically describing their approach to genomic education. The following target groups were included in the educational efforts: the general public (nine projects), patients (six projects), and genomic professionals (16 projects), reflecting the general overall aims of the projects such as determining normal and pathological genomic variation, improving infrastructure, and facilitating personalized medicine. The national genomic projects aim to increase genomic literacy through supplementing existing national education in genomics as well as independent measures specifically tailored to each target group, such as training events, research collaboration, and online resources for healthcare professionals, patients, and patient organizations. This review provides the current state of educational activities within national genomic projects for different target groups and identifies good practices that could contribute to patient empowerment, public engagement, proficient healthcare professionals, and lend support to personalized medicine.

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Images of the Hospice

10.1093/oso/9780198813958.003.0009 ◽

2017 ◽

Author(s):

Alan Baron ◽

John Hassard ◽

Fiona Cheetham ◽

Sudi Sharifi

Keyword(s):

General Public ◽

Palliative Medicine ◽

Healthcare Professionals ◽

Hospice Care ◽

Care Work ◽

Dirty Work ◽

Key Stakeholders ◽

Host Organization ◽

Local Healthcare

This chapter looks ‘outside’ the Hospice at issues of the organization’s image. The authors talked to staff, volunteers, and members of the general public, as well as to a number of key stakeholders in the local healthcare community, in order to gauge their views on the host organization. The analysis examines the problems associated with the image of hospices and discusses attempts of staff and volunteers to ‘dispel the myths’ about the nature of hospice care work—a form of labour which potentially runs the risk of being characterized as ‘dirty work’. The chapter then examines how the Hospice is seen in the eyes of other healthcare professionals and discusses the choice of palliative medicine as a career for junior medics. Finally it discusses a degree of ‘confusion’ that staff and volunteers claim exists in the minds of GPs and consultants in specialist cancer hospitals about the role of hospices.

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Knowledge, attitude, and perception of oral and maxillofacial surgery specialty amongst healthcare professionals, and the General Public from a Gulf Cooperation Council (GCC) Country

BMC Surgery ◽

10.1186/s12893-021-01064-y ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Mohammad Kamal ◽

Mohammad Abdulwahab ◽

Ahmed Al-Zaid

Keyword(s):

Cosmetic Surgery ◽

General Public ◽

Healthcare Professionals ◽

Maxillofacial Surgery ◽

P Value ◽

Oral And Maxillofacial Surgery ◽

Medical Doctors ◽

Surgical Specialty ◽

Cross Sectional ◽

Clinical Scenarios

Abstract Background Oral and maxillofacial surgery specialty has grown rapidly in Kuwait in recent years. However, the general public and healthcare professionals remain unaware of its expanding scope of practice. The aim of the study is to assess public and professional (dental and medical) perception of the oral and maxillofacial surgical specialty in Kuwait. Methods This is a cross-sectional study evaluating responses of dental professionals, medical professionals, and general public in Kuwait toward the oral and maxillofacial surgical specialty using a previously validated survey instrument with 100 participants in each group. Participants were asked to choose the most appropriate specialist to treat certain procedures across 4 disciplines: reconstruction, trauma, pathology, and cosmetic. Statistical comparison was conducted between dentists and medical doctors using Fisher’s exact test with a p-value of < 0.05. Results Disparities were noted each group’s responses. Oral and maxillofacial surgery was preferred overall for most clinical scenarios in trauma (p < 0.001), pathology (p < 0.001), and reconstructive surgery (p < 0.001). Plastic surgery was preferred for cosmetic surgeries (p < 0.001). Conclusions This study indicates the need to increase awareness especially towards cosmetic surgery procedures, and conduct health campaigns regarding oral and maxillofacial surgery among healthcare professionals, especially medical doctors, and the general public.

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The fourth edition of the European Network for Health Technology Assessment Forum: highlights and outcomes

International Journal of Technology Assessment in Health Care ◽

10.1017/s0266462320000185 ◽

2020 ◽

Vol 36 (3) ◽

pp. 191-196 ◽

Cited By ~ 1

Author(s):

Giovanni Tafuri ◽

Chantal Bélorgey ◽

Carlo Favaretti ◽

Edith Frénoy ◽

Flora Giorgio ◽

...

Keyword(s):

Health Technology Assessment ◽

Technology Assessment ◽

Healthcare Professionals ◽

Health Technology ◽

Joint Production ◽

European Network ◽

Fourth Edition ◽

Patient Organizations ◽

Medical Need ◽

To Receive

The European Network for Health Technology Assessment (EUnetHTA) organizes an annual Forum with stakeholders to receive feedback on its activities, processes, and outputs produced. The fourth edition of the EUnetHTA Forum brought together representatives of HTA bodies, patient organizations, healthcare professionals (HCPs), academia, payers, regulators, and industry. The aim of this paper is to provide an overview of the highlights presented at the 2019 EUnetHTA Forum, reporting the main items and themes discussed in the plenary panel and breakout sessions. The leading topic was the concept of unmet medical need seen from different stakeholders' perspectives. Breakout sessions covered the joint production of assessment reports and engagement with payers, patients, and HCPs. Synergies, pragmatism, and inclusiveness across Member States and stakeholders were emphasized as leading factors to put in place a collaboration that serves the interest of patients and public health in a truly European spirit.

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Evaluation of two strategies to implement physical cancer rehabilitation guidelines for survivors of abdominopelvic cavity tumors: a controlled before-and-after study

Journal of Cancer Survivorship ◽

10.1007/s11764-021-01045-3 ◽

2021 ◽

Author(s):

Charlotte IJsbrandy ◽

Petronella B. Ottevanger ◽

Winald R. Gerritsen ◽

Wim H. van Harten ◽

Rosella P. M. G. Hermens

Keyword(s):

Primary Outcome ◽

Healthcare Professionals ◽

Patient Empowerment ◽

Implementation Strategies ◽

Primary Outcome Measure ◽

Cancer Rehabilitation ◽

Systematic Screening ◽

Before And After ◽

Before And After Study

Abstract Purpose This study evaluates the effectiveness and feasibility of two strategies to implement physical cancer rehabilitation (PCR) guidelines for patients who have survived abdominopelvic cavity malignancies. Methods We tested and compared two tailored strategies to implement PCR guidelines for survivors of gastrointestinal, female organ and urogenital organ malignancies, in a clustered controlled before-and-after study. A patient-directed (PD) strategy was tested in five cancer centers, aiming to empower survivors. A multifaceted (MF) strategy was tested in four cancer centers, aiming additionally to influence healthcare professionals and the healthcare organization. Data were collected from existing registration systems, patient questionnaires and professional questionnaires. We measured both implementation- and client outcomes. For insight into the effectiveness we measured indicators related to PCR guidelines: (1) screening with the Distress Thermometer (DT) (=primary outcome measure), (2) information provision concerning physical activity (PA) and physical cancer rehabilitation programs (PCRPs), (3) advice to take part in PA and PCRPs, (4) referral to PCRPs, (5) participation in PCRPs, (6) PA uptake (PAU); and patient reported outcomes (PROs) such as (7) quality of life, (8) fatigue, and (9) empowerment. Furthermore, survivor and center determinants were assessed as possible confounders. Multilevel analyses were performed to compare the scores of the indicators of the PD and MF strategies, as well as the differences between the characteristics of these groups. The use of and experiences with both strategies were measured using questionnaires and Google Analytics to assess feasibility. Results In total, 1326 survivors participated in the study, 673 in the before- and 653 in the after-measurement. Regarding our primary outcome measure, we found a significant improvement of screening with the DT between the before- and after-measurement for both strategies, respectively from 34.2 to 43.1% (delta=8.9%; odds ratio (OR)=1.6706; p=0.0072) for the PD strategy and from 41.5 to 56.1% (delta=14.6%; OR=1.7098; p=0.0028) for the MF strategy. For both the primary and secondary outcomes, no statistically significant effect of the MF strategy compared to the PD strategy was observed. We found good use of and positive experiences with both strategies. Conclusion Implementation strategies containing tools enhancing patient empowerment seem to be effective in increasing the systematic screening with the DT for survivors of abdominopelvic cavity malignancies. Further research is needed to assess the additional effectiveness of strategies that stimulate compliance among healthcare professionals and healthcare organizations. Implications for Cancer Survivors Using implementation strategies containing tools enhancing patient empowerment seem to be effective in increasing the systematic screening with the DT and might improve the quality of care of patients who have survived abdominopelvic cavity malignancies.

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Reliability and Evaluation of Health Information Online

Web Mobile-Based Applications for Healthcare Management ◽

10.4018/978-1-59140-658-7.ch008 ◽

2011 ◽

pp. 181-196

Author(s):

Elmer V. Bernstam ◽

Funda Meric-Bernstam

Keyword(s):

Quality Assessment ◽

Health Information ◽

Search Engine ◽

General Public ◽

Web Search ◽

Healthcare Professionals ◽

General Purpose ◽

Assessment Tools ◽

Online Health Information ◽

Web Search Engine

This chapter discusses the problem of how to evaluate online health information. The quality and accuracy of online health information is an area of increasing concern for healthcare professionals and the general public. We define relevant concepts including quality, accuracy, utility, and popularity. Most users access online health information via general-purpose search engines, therefore we briefly review Web search-engine fundamentals. We discuss desirable characteristics for quality-assessment tools and the available evidence regarding their effectiveness and usability. We conclude with advice for healthcare consumers as they search for health information online.

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Educational needs of healthcare professionals and members of the general public in Alberta Canada, 2 years after the implementation of medical assistance in dying

Health & Social Care in the Community ◽

10.1111/hsc.12766 ◽

2019 ◽

Author(s):

Donna M. Wilson ◽

Jean A. C. Triscott ◽

Joachim Cohen ◽

Rod MacLeod

Keyword(s):

General Public ◽

Healthcare Professionals ◽

Educational Needs ◽

Medical Assistance ◽

Medical Assistance In Dying

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The “Obiettivo Antibiotico” Campaign on Prudent Use of Antibiotics in Sicily, Italy: The Pilot Phase

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17093077 ◽

2020 ◽

Vol 17 (9) ◽

pp. 3077 ◽

Cited By ~ 1

Author(s):

Martina Barchitta ◽

Annalisa Quattrocchi ◽

Andrea Maugeri ◽

Maria Clara La Rosa ◽

Claudia La Mastra ◽

...

Keyword(s):

Social Media ◽

Antimicrobial Resistance ◽

General Public ◽

Healthcare Professionals ◽

Educational Interventions ◽

World Health ◽

Pilot Phase ◽

The Public ◽

The World ◽

Health Organization

The issue of antimicrobial resistance (AMR) is a focus of the World Health Organization, which proposes educational interventions targeting the public and healthcare professionals. Here, we present the first attempt at a regionwide multicomponent campaign in Sicily (Italy), called “Obiettivo Antibiotico”, which aims to raise the awareness of prudent use of antibiotics in the public and in healthcare professionals. The campaign was designed by an interdisciplinary academic team, and an interactive website was populated with different materials, including key messages, letters, slogans, posters, factsheets, leaflets, and videos. The campaign was launched in November 2018 and, as of 21 December 2018, the website had a total of 1159 unique visitors, of which 190 became champions by pledging to take simple actions to support the fight against AMR. Data from social media showed that the audience was between 18 and 54 years of age, with a high proportion of female participants (64%). Interestingly, the LinkedIn page received more than 1200 followers, and Facebook 685 followers. The number of actions taken (pledges) by the audience was 458, evenly divided between experts (53%) and the general public (47%). Additional efforts are needed to reach more people, thus future efforts should focus on further promotion within the Sicilian region to sustain the engagement with the campaign.

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The urgent need to empower rare disease organizations in China: an interview-based study

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-020-01568-5 ◽

2020 ◽

Vol 15 (1) ◽

Author(s):

Xuefeng Li ◽

Zijuan Lu ◽

Jianyong Zhang ◽

Xiangyu Zhang ◽

Shu Zhang ◽

...

Keyword(s):

Rare Disease ◽

Orphan Drug ◽

Rare Diseases ◽

General Public ◽

Unmet Needs ◽

Financial Resources ◽

Western Countries ◽

Disease Awareness ◽

Patient Organizations ◽

The Government

Abstract Background Each rare disease only affects a small number of population. However, a total of 7000 rare diseases may affect 10% of the population. Due to the severity and lack of rare disease awareness, rare disease represents a huge challenge for the healthcare system. In Western countries, patient organizations have been playing an integral role in raising awareness, advocating legislation, and supporting drug development. This study aims to assess the unmet needs of rare disease patient organizations in China, and identify their unmet needs, providing essential information for the government and legislators. Results A total of 28 individuals representing 28 patient organizations in China were interviewed. Most organizations do not have official registration, employees, written standard operation protocol, or reliable financial resources. Misdiagnosis or delayed diagnosis is common, and treatment is often lacking. Due to the lack of financial resources, no organizations have been able to sponsor academic research, unlike their counterparts in Western countries. As to challenges, 71.4% of interviewees listed lack of rare disease awareness among the general public, while 67.9% selected lack of financial resources. Further, only 7.3% of these organizations received support from the government, and 28.6% received support from the general public. As to recommendations to the government, 82.1% of interviewees selected special insurance programs for rare diseases because rare diseases have been generally excluded from the national medical insurance programs. In addition, 78.6% of interviewees recommended to stimulate rare disease research, 75% recommended to import orphan drugs, and 71.4% recommended legislation of an orphan drug act, highlighting the urgent need of therapies. Conclusions Due to lack of support and rare disease awareness, patient organizations in China are still in the early phase. To empower these patient organizations, the interviewees’ recommendations, including legislating orphan drug act and releasing official definition of rare diseases, should be considered by the government and legislators.

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A marketing audit of the actuarial profession

Journal of the Institute of Actuaries ◽

10.1017/s0020268100019430 ◽

1991 ◽

Vol 118 (2) ◽

pp. 195-274 ◽

Cited By ~ 1

Author(s):

R. J. H. Milne ◽

G. M. Bagot ◽

A. C. Buchanan ◽

A. R. Goodman ◽

A. K. Gupta ◽

...

Keyword(s):

North America ◽

General Public ◽

Swot Analysis ◽

Task Force ◽

Public Awareness ◽

Pension Scheme ◽

Press Coverage ◽

Target Groups ◽

Company Directors ◽

Set Up

ABSTRACTThis paper presents the results of research into the marketing of the actuarial profession including a SWOT analysis, public awareness and image of the profession amongst target groups (general public, undergraduates, journalists, company directors, pension scheme trustees and insurance intermediaries), and the desire to allocate more resources to the profession's public awareness and image. The paper also contains an analysis of the national press coverage achieved by the profession and reports on developments in North America where a task force on strengthening the actuarial profession has been set up.

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