Health information and literacy
Over the last 30 years or so, changes in the application of consumer law and health promotion have led to a more inclusive and better informed society. Though for roughly 20% of the population – those Australians with disabilities – the question is: has this social change really been effective? This article looks at the work of the Disability Advocacy and Information Service, and the regional groups its supports, in bring change to local communities.
Interesting study measuring health literacy amongst the public and clinicians in Mexico, China, Ghana and India. The study used thirteen ‘essential Facts for Life messages’ to measure health literacy including: child development and early learning; nutrition and growth; immunisation; serious illnesses; and injury prevention.
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Sponsored by the Partnership for Clear Health Communication at the National Patient Safety Foundation "The National Patient Safety Foundation's mission is to improve the safety of the health care system, of which health literacy is a critical component. Understanding that communication breakdowns are the leading source of medical errors, NPSF will be integrating PCHC's flagship health literacy program, Ask Me 3, into its program offerings.
Ask Me 3 promotes three simple but essential questions that patients should ask their providers in every health care interaction:
1. What is my main problem?
2. What do I need to do?
3. Why is it important for me to do this?
Recently Health Issues Centre and the Centre for Clinical Effectiveness, at Monash Institute of Public Health collaborated on a project titled, Assessing the Quality of Consumer Information. The project sought to assess the quality of written information provided by Victorian public hospitals from the perspective of the consumer, clinician, publisher and evidence based research and was based on a similar project Informing Patients, conducted by the King's Fund in the UK in 1997. This article focuses on the consumer feedback related to experiences of receiving written health information related to a particular medical condition.
This website is a 'one-stop info-shop' for people interested in improving the health of Indigenous Australians. It has a large range of resources to use in policy and practice, and also provides 'yarning places' to encourage information-sharing and collaboration.
This web site includes the first comprehensive measure of personal and national wellbeing in Australia and includes the following topics: Genuine Progress Indicator (Australia; Alternative to GDP, includes social and environmental costs etc. ; Measuring Australia’s Progress; Key ABS national progress measurement project, bi-ennial. ; Unequal in Life; National community based survey of living standards and inequality in Australian communities
Health and medical information for consumers, quality assured by the Victorian government (Australia).
The Border Cancer Care Coordination Project is an action-based research project that has been piloting a model of coordinated cancer care in a regional and rural environment. The federal Department of Health and Ageing funded the project with support from the New South Wales Cancer Institute and the Victorian Department of Human Services. The project has been conducted in the Albury-Wodonga region and focused on cancer care coordination, multidisciplinary case conferencing in a regional/rural environment, information dissemination through a cancer website, and gathered data on cancer patient needs. It also looked at cross-border issues (service provision in a two-state environment) as well as the interface between public and private service provision and how this can work to effectively meet cancer patient needs.
For women diagnosed with breast cancer, timely, accurate and relevant information is a must. Difficult treatment decisions often need to be made and various options considered within a relatively short time-frame, sometimes when the trauma of diagnosis is still present. Too often the information provided to help with these decisions ignores the diversity and dynamic nature of the target audiences, their information preferences, needs, and sadly, intelligence. This article describes how the Breast Cancer Knowledge On-line Research Project set about researching these issues with the aim of providing a ‘gateway’ to both sources and resources which would ‘tailor’ information to the consumers’ diverse needs.
Breast Cancer Network Australia (BCNA) is driven by women who have experienced breast cancer. BCNA's role is to empower, inform, represent and link together Australians personally affected by breast cancer. The site has a Victorian page that includes a list of support groups and local events.
This USA site promotes safe, effective and satisfying evidence-based maternity care. It aims to help women and health professioaternity care decisions.
Many claims are made about health and medicine, but how do we know what really works? The Cochrane Collaboration is an international, independent non-profit organisation which produces systematic reviews of the evidence. The reviews are published online as part of the Cochrane Library.
A publication prepared for the Department of Human Services, Acute Health Division, by the Centre for Clinical Effectiveness and Health Issues Centre. The project was based on the King's Fund study 'Informing patients: An assessment of the quality of patient information materials', UK, 1998. The guide is a distillation of the findings of the project on the preferred format, content, presentation and language necessary in a quality publication.
Produced by NHMRC
Produced by VQC
Produced by the University of Technology Sydney.
The CIV is a collaborative project hosted by the McCaughey Centre, School of Population Health, University of Melbourne. This web site includes local community wellbeing indicators to improve citizen engagement, community planning and policy making.
The California Wellness Guide is a health information and referral resource designed to provide information on how to stay well and where to find help on health related topics for a socially and culturally diverse population of 10 million people in the USA. This article describes how community participation played a central role in the development of the content and format of the Guide. Both the process of developing the resource and the final product suggest strategies useful to the development of health information resources in Australia.
Produced by the California Healthcare Foundation.This report outlines possible ways to overcome the problems that some consumers faced when using decision aids, including the issue of low literacy and the context where the decision making process takes place.
DISCERN is a general set of quality criteria designed in the United Kingdom to enable consumers and other health information users judge the quality of treatment information on treatment choices.
To make informed health decisions, you have probably read a newspaper or magazine article, tuned into a radio or television program, or searched the Internet to find answers to health questions. If so, you have probably encountered "medspeak," the specialized language of health professionals.
The Medical Library Association developed "Deciphering Medspeak" to help translate common "medspeak" terms: You can download the brochures
This article describes a new kind of research entity, which is called the Cochrane Consumers and Communication Review Group. It is part of the Cochrane Collaboration, whose mission is to help people make well-informed decisions about health care. The mission of the Cochrane Collaboration is to help people make well-informed decisions about health care. One method it uses to achieve this is ensuring that high-quality and up-to-date systematic reviews of the effects of health interventions are made widely available. The main output of researchers involved in the Collaboration is the Cochrane Library, which publishes all completed systematic reviews four times a year. It is available free to all Australian residents with access to the Internet at www.update-software.com/cochrane/ Also available on the Library is information about the different types of groups and networks that are active in the Cochrane Collaboration.
This clearinghouse is a central access point for Australian multicultural health services, resources, research and projects, training and events.
Presented by Spase Veljanovski at the Cosnumers Reforming Health Conference 2011.
A strong patients’ voice to drive better health in Europe Conference on Health Literacy 8-9 April 2008 Main conclusions and recommendations
Seven main conclusions and a series of recommendations are presented in a five pages document. One of the main conclusions is that “from a patient’s perspective, the knowledge and competence gained through health literacy lead to the strength and empowerment needed to manage well a disease/condition and its impacts on quality of life”.
PResneted by Michael Janssen at the Consumers Reforming Health conference 2011.
The Internet is the fastest growing source of health information with over five million websites worldwide, of which 100,000 are health related. There is a need for a consumer guide on how to find health information on the Internet and evaluate its quality and the quality of the website providing the information. This article attempts to meet this need by describing a systematic approach for an Internet search where the consumer is encouraged to: identify the type of information being sought; identify the most appropriate search software; and discover tools for assessing the quality of the information retrieved and technical quality of websites.
Health Literacy Consulting helps individuals and organizations communicate health information in ways patients, families, and employees can understand. It does so through a range of services, products, and resources.
This is a private consultancy website in the US however it has lots of useful articles and resources you can use
Health literacy is the capacity to obtain and understand the basic health information and services needed to make the best health decision. Low health literacy will therefore be likely to contribute to poorer health outcomes for consumers. This USA website has evidence and tools that can be used by consumers and health providers.
An initiative in the US, find out how to start your own in Australia
This is the 11th year of Health Literacy Month-an annual awareness-raising event started in 1999 by Helen Osborne along with a team of health literacy advocates.
This article describes the methods a Victorian community health service used to engage their community in developing health information for the community’s use.
The toolkit is based on the principles of universal precautions, or specific actions that providers can take to make health information more understandable for all patients. It is designed to be used by all levels of staff in practices providing primary care for adults and/or pediatric patients.
USA Agency for Healthcare Research and Quality
A primary health care system that is appropriate and universally accessible requires and active agenda based on research of approaches to address low literacy, while health care providers should be alert to the widespread problems of literacy which span all age levels
Behavioral change campaigns have limited if any effect on pope with low literacy and therefore inadvertently health inequalities are increased. All government departments that produce health information for the general public and health services have a responsibility to facilitate all people’s access to health information.
Health literacy information form the ABS
Within a widening discussion of the importance of literacy in health care is a term that is increasingly appearing in the health lexicon—health literacy. In acknowledging the development of this field, this article looks at some of the issues associated with the terminology and trends with health literacy. It examines some of the research and responses in health that are shaping a growing knowledge base.
This is a Commonwealth Government initiative which has up-to-date quality health information.
This is another evidence-based health information site is from the German Institute for Quality and Efficiency in Health Care. Readers can rate the usefulness of each piece of information and comment on it. There are other interesting interactive aspects to the site, which was developed with consumer input.
Presentations from the Institute Of Medicine Workshop on Integrating Health Literacy in Prevention Programs. The workshop was held on September 15, 2009 in the Washington Plaza Hotel located at 10 Thomas Circle, NW in Washington DC.
This is a list of acronyms and terms designed to assist consumers, carers and community members as well as health professionals to navigate the complex language of the health sector.
This is an initiative from the US National Library of Medicine and the National Institutes of Health. The site has over 700 health topics, a medical dictionary and encyclopedia, medicine information and interactive tutorials.
Caution: There are also links to videos of surgery which are clearly explained with appropriate diagrams and camerawork - but not for the squeamish.
focuses on key challenges that the people of the world face today in achieving health: corporate-led globalization, war and occupation, the need for comprehensive and sustainable primary health care, the HIV/AIDS epidemic, environmental damage, discrimination in the right to health, and violence against women.
Prodcued by the Australian Health and Medical Research Council - a guide to effective participation of consumers and communities in developing and disseminating health information.
Participate in health resources added for October 2009
This Unit is a partnership between Aboriginal and non-Aboriginal people which affirms Aboriginal knowledge, values and processes in all of its work. Onemda uses its extensive experience in Aboriginal health care, health service and policy to undertake research, teaching and Koori community development.
This link includes: What are patient decision aids?
How can I find decision aids and learn about their quality?
A to Z Inventory: allows you to search for decision aids on particular health topics.
Ottawa Personal Decision Guide: a general decision guide that can be used for any health or social decision.
How do I develop a decision aid?
Development Toolkit: provides information for developers and researchers interested in producing decision aids.
How can I implement decision aids in clinical practice?
Implementation Toolkit: provides tools and training for incorporating decision support in practice centres.
The Ottawa Health Research Institute has an extensive collection of 'Patient Decision Aids' designed to help consumers make difficult healthcare decisions and to assist health providers in supporting those consumers. Each decision aid has been assessed against at least minimum approved standards.
A Review of the Evidence looks at the costs and benefits, in terms of health care quality, of various United Kingdom strategies to involve patients and the public. These include patient involvement in safety, improving the care experience and health decision-making, and managing one's own health care more effectively. Patient-Focused Interventions: A Review of the Evidence looks at the costs and benefits, in terms of health care quality, of various United Kingdom strategies
available in 33 languages, it was formulated and endorsed by 1453 participants from 92 countries at the People's Health Assembly in December 2000 in Bangladesh.
aims to provide a people's perspective on HIV/ AIDS and related issues like access, rights and trade issues. It was officially released by the People's Health Movement during the International AIDS conference at Bangkok in July 2004.
Thinking about health globally is a challenge. Watch this exciting high-tech presentation from Professor Hans Rosling, Professor of International Health at Sweden's Karolinska Institute. You will never think in the same way again about health statistics and world trends!
Note: you will need to have sound on your computer, and the latest (free) version of Flash Player. See more dazzling data at Gapminder www.gapminder.org
The South West Primary Care Partnership's Consumer Access to Service Information Project resulted in three consumer-designed Service Information Hubs opened their doors, two in Warrnambool and one in Port Fairy. The project has seen consumers leading the project through every phase. This article reviews the methods and models of consumer participation used within the project, the use of community development strategies as a facilitator between community and bureaucracy within the health reform context, and the challenges the project faces.
In 1999, Austin Health conducted an audit that revealed inadequacies in written consumer information in a range of areas including pre-operative and discharge information. In 2000, the first stage of the Patient Education Material Project (PEP) designed a process and system of best practice for the development of consumer education materials to be implemented at Austin Health. The second stage (PEP2) was undertaken in 2002 to investigate the effects on English, Greek and Italian-speaking consumers ’ experience of receiving quality education materials about colorectal cancer surgery. The project consists of four phases: evaluation of the existing consumer education materials; development of a education package; intervention; and evaluation of the intervention. This article describes the consumers’ experience of receiving the existing consumer education in the project’s first phase.
This organisation provides a forum for the exchange of ideas, knowledge and information on public health. The Association is also involved in advocacy for public health policy, development, research and training. There are special interest groups pages on the site and each state and territory has a branch with its own online discussion forum. It is worth browsing the forums outside your home state to find papers on ethics, health inequalities and social determinants of health.
This project aimed to evaluate Austin and Repatrication Medical Centre's systems for providing education/informtion to English- and non-English- speaking patients and determine the effects of providing good quality, culturally specific education/information on health outcomes.
This is a new independent online service that produces Reviews of medical journals. The Reviews include 10 research summaries selected from the top global peer-reviewed journals with commentary from a key Australian specialist in that field on the implications for practice. They are only four pages and take about 15 minutes to read.
Self Help Queensland is a not for profit community organisation comprising a network of self help and support groups in Queensland. The groups include participants with a broad range of health conditions and well being issues.
This report documents the outcomes of a literature review and consultations which were carried out during phase 1 of the project. It summarises the barriers which prevent consumers from identifying and obtaining information relating to health, and suggests characteristics of successful models for facilitating consumer access to health information.
(Note. Phase 2 of the project: to develop core principles for good practice in this area, did not proceed.)
Sustain advocates food and agriculture policies and practices that enhance the health and welfare of people and animals, improve the working and living environment, enrich society and culture and promote equity. Via its Community Mapping Project, Sustain's Food Poverty Network aims to enable people to understand their local food economies and develop solutions to the problems they face in obtaining a healthy diet for themselves and their families. The project emphasises participation, action and ownership at every stage of the process by all people involved
Getting the most out of the clinical conversation.
The article provides empirical evidence that the ways American consumers once thought about health have changed and multiplied in this new era of competing health paradigms. The study demonstrates that in the current environment consumers think about health and health care in a multiplicity of very different ways, leading to the conclusion that we should not classify health care consumers as either conventional or alternative.
The Victorian Department of Human Services supports a range of initiatives which promote and support consumer involvement in decision-making about their own treatment and care, in service development and quality improvement, and more broadly, in health policy developments.
The Victorian Health Inequalities Network is a network for non-government, government and academic organisations, and anyone interested in inequalities that result in reduced health and wellbeing. The network aims to encourage public dialogue about the development of coherent strategies to reduce inequalities, and progressive agendas that support visions for equitable opportunities for all Victorians.
VMIAC is a not-for-profit organisation whose purpose is to provide support, advocacy and referrals to people who are experiencing emotional or mental distress, as well as providing information and education about mental health services to the whole community
IAPO's survey on perceptions of healthcare among patients' organisation members in Canada, Nigeria, and 10 European Union member states found strongly shared views. Recurring themes were the need for timely access to the best treatment and information, and belief in patients' rights to participate in decisions about their health care and in health care policy making.
Women's Health Victoria is an independent Victorian women's health promotion organisation. Their website includes is a great source of quality information on many topics of women's health through their clearinghouse, which can be searched online.
This Cochrane Review from 25 studies showed that there was not strong enough evidence to say whether written medicines information is effective in changing knowledge, attitudes and behaviours related to medicine taking. There is some evidence that written information can improve knowledge.
Nicolson D, Knapp P, Raynor DK, Spoor P. Written information about individual medicines for consumers. Cochrane Database of Systematic Reviews 2009, Issue 2.