Istituto Superiore di

Sanità

Maurella Della Seta

Head Documentation Unit Knowledge Service

maurella.dellaseta@iss.it

Transfer of Knowledge from Scientists to Citizens and Patients

Istituto Superiore di Sanità Italian National Institute of Health

Mission

Promotion and protection of national and international public health

through research, surveillance, regulation, control, prevention,

communication, counselling and training

Vision

The ISS produces knowledge through research and trials and disseminates

scientific knowledge and evidence to decision-makers, professional

workers and citizens in order to protect and promote public health

ISS Departments

Cardiovascular, endocrine-metabolic and ageing-associated

diseases

Environment and health

Food safety, nutrition and veterinary public health

Infectious diseases

Neurosciences

Oncology and molecular medicine

ISS National Centres (1) Addiction and doping

Animal research and welfare

Chemicals, cosmetics and consumer protection

Clinical excellence, healthcare quality and safety

Control and evaluation of medicines

Disease prevention and health promotion

Drug research and evaluation

Global health

National Centres (2)

Health technology assessment

HIV/AIDS research

Innovative technologies in public health Radiation protection

and computational physics

Rare diseases

Telemedicine and new healthcare technologies

Blood

Transplants

Reference Centres Behavioural sciences and mental

health

Gender medicine

ISS President’s offices

Knowledge unit (documentation and

library)

Scientific communication unit

…..

Documentation Unit Projects • Over the last ten years, the Documentation Unit has begun several

European and national research projects

• Several initiatives undertaken in the field of consumer health

information and health literacy promotion, in order to improve

public health in Italy

• Results of several projects developed to assess the health

literacy level in Europe showed the need for improving population

understanding of health-related information, in order to make

appropriate health decisions

What is Health Literacy? • Health Literacy (HL): the degree to which individuals

have the capacity to obtain, process, and understand basic health information and services needed to make appropriate decisions (1)

• Health Literacy is an important health determinant: low HL competencies result in less healthy choices, riskier behavior, poorer health, less self-management and more hospitalization

• Patients with a good level of knowledge on health information play a key role in the implementation of patient-centered clinical research strategies, approval processes, access to treatments and treatment optimization

• (1) Health literacy: a prescription to end confusion. Washington: National Academies Press; 2004. DOI: 10.17226/10883

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Health Literacy Level in Europe and in Italy

• How can HL be measured?

• The first European Health Literacy Survey (HLS-EU) was conducted in summer 2011 in eight countries: Austria, Bulgaria, Germany, Greece, Ireland, the Netherlands, Poland and Spain (HLS-EU-Q47 HLS-EU Consortium (2011): HLS-EU-Q47. The European Health Literacy Survey Questionnaire - original matrix related version)

• No official definition for HL has been introduced in Italy

• Studies have been carried out evaluating the HL skills of different samples of the Italian population, adopting the existing concepts found in literature.

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Information Specialist Involvement in HL

(ISS Documentation Unit experiences) • Health literacy and health education fostering

participation and improving women’s and men’s health. EC funded Gruntdvig Partnership (2011-2013)

• Research Project funded by the Italian Ministry of Health: Health literacy and patient empowerment through the development of an e-health information system (2014-2017). Development of the portal Medusa (Medicine and Health on the Net)

• A recent project and publication: Evaluation of Health Literacy Skills in Family Doctors’ Patients by two Brief, Self-Administered Italian Measures

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About the «Medusa» project • Health Literacy and Patient Empowerment through the

development of an e-Health Information System

• Duration of the project: 2012-2016

• Funded by the Italian Ministry of Health

• Grant of €258,500 (GR‐2010‐2313824),

• Lead by the Istituto Superiore di Sanità (ISS), the Italian National Institute of Health (ICT Service and Documentation Service)

• Sapienza, University of Rome, Department of Clinical Medicine

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Objectives of the project • Increasing health literacy level and patient empowerment

• Collecting and organizing the large amount of health information available from quality-evaluated Internet sources

• Developing a Web Portal (MEDUSA – Medicina Utenti Salute in rete)

• Providing indexing of selected resources using the Italian Translation of MeSH

• Developing a training pathway in order to enable participants to evaluate health information available on the web, and select relevant and reliable health information.

• Developing a patient-friendly educational multimedia toolkit on medical information for course participants, to be re-used at local courses.

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Main results of our project

• 1 WEB PORTAL

• 1 DATABASE (Dspace)

• 450 INDEXED DOCUMENTS

• 50 TUTORIALS

• 64 HEALTH MACRO-AREAS

• 500 MeSH TERMS IN ITALIAN

• 6 TRAINING COURSES

• 2 POSTERS

• 3 ORAL PRESENTATIONS

• 3 PUBLICATIONS

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Training Courses addressed

to patients associations representatives

Methods

• The training methodology combined face-to-face and hands-on sessions, ensuring a wide dissemination of information through the use of a cascade model.

• This approach is based on the principle that trainees have to coach and mentor other trainees who, in turn, will train others and so on, from level to level. Accordingly, soft and hard copies of teaching materials were delivered to all participants, to provide them with the necessary means to conduct training at local level.

The Cascade Model

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Training courses in five Italian regions

Aviano

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Challenges and Opportunities of the Training Pathway

Weaknesses • It was planned at first to

focus on Patient Associations

• Several organizations were

contacted but not many were

able to respond or meet the

needs of our training proposal

• The Portal was built in

Italian and that might rise

some difficulties for

foreigners and migrants living

in Italy.

Strenghts

• Specific sessions during the courses were scheduled to deepen pressing health issues

• Therefore several hot topics such as Dementia, Alzheimer Disease, Alcohol and Pregnancy, ADHD, cancer, were addressed by experts (medical doctors and allied health personnel), and patient association representatives. This initiative was highly and widely appreciated

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The ISSalute Portal https://www.issalute.it/

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Health from A to Z

Lifestyles and Environment False beliefs and Fake News

Last

updates

Links to ISS Hotlines, Blood Donation, Organ

Donation

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ISSalute main features

Medical doctors, researchers, communication experts, and medical information specialists joined their forces in a common effort to give birth to a product with the following characteristics:

• Trustworthy and detailed health information, revised by scientists and experts

• Plain language, understandable by people with different cultural background

• Eye-catching multimedia information, attractive for younger population, or for specific user groups

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Transfer of Knowledge from scientist to citizens

The Scientific Board (Researchers, Medical doctors) is in charge of:

• proposing health topics

• revising the contributions developed by the Editorial BoardThe Editorial Board writes the records on health topics, using reliable sources

The Editorial Board is organized into subgroups, each focused on specific aspects

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Editorial Board subgroups

• Video and tutorial production

• Social media diffusion

• Search engines optimization (SEO), information tags, keywords, and links

• Fake news and false beliefs

• Pictures and photographs

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ISSalute Tested (before its launch)

• 6 focus groups composed of 50 persons aged between 13 and 86 with a degree ranging from the primary school diploma to University degree

• 86% searched the Internet for health information

• Only 21% believed that health information on the Internet is reliable

• 98% believed the information disseminated by ISS is reliable

• 100% considered the ISSalute website not only useful but necessary to respond to the clear and comprehensible information needs of citizens

• 94% considered that the objective of the site should be to provide clear information with simple and understandable language and only 2% that it should give information using scientific language

• 96% considered the website easy to navigate and immediately found the information of interest

• 100% thought it was easy to understand the records about diseases that he/she explored

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Other data about the ISSalute website

• The contributions published until now are about 500

• More than 200 contributions are under revision

• There are 114 videos linked to contributions, 4 original creative videos on women's cosmetics, men's cosmetics, melanoma prevention, gender differences.

• From the launch of the portal (Spring 2018) there has been a slow but constant increase in the number of users

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Google Analytics ISSalute Website data

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Growth of visitors in November 2018 due to a popular TV broadcasting

about the website

Issalute is on Facebook and Twitter

• 5494 like

• 5654 followers

• 42 reviews

• 40 five *

• 2 four *

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• 682 followers

• 504 tweets

• 22.700 displays

Facebook Twitter

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https://www.facebook.com/ISSalute

To be informed makes the difference

for health personnel as well

ISSalute Facebook page

Thank you for your kind

attention

Istituto Superiore di Sanita

Viale Regina Elena, 299 – Rome (Italy)

www.iss.it