Caroline,
Thank you very much for that list - very useful.
You might like to add the website that I'm developing - EQUIP - Electronic
Quality Information for Patients www.equip.nhs.uk. We are creating a
gateway to websites that fulfil certain quality criteria and have certain
informative sites that have been checked by clinicians and other medical
experts for accuracy and appropriateness for UK public audience. It is
intended to act as a self-help site and we have started on topics that suit
this ethos - heart disease, diabetes, arthritis etc. We are using patient
user groups at each major topic to establish waht they want to see and have
also surveyed patient internet users on what they like/dislike about
websites they come across.
The website is in infancy at the moment but is building all the time.
Thanks
Sarah
*************************************************
Sarah Greening
Intelligence Officer - Patient Information
Partnership for Developing Quality
Regional Library Unit, Public Health Building,
University of Birmingham
Birmingham. B15 2TT
Tel. 0121 414 7754
email [log in to unmask]
EQUIP - Electronic Quality Information for Patients at www.equip.nhs.uk
*************************************************
-----Original Message-----
From: Caroline Miller [SMTP:[log in to unmask]]
Sent: Friday, June 22, 2001 4:42 PM
To: [log in to unmask]
Subject: sources of consumer health information
I have recently compiled a list of consumer health information sources as
an
information paper and I thought members of the consumer-health-informatics
list may find it useful. I have copied the contents into this email. Any
suggestions of additional sources are most welcome.
Caroline Miller MA
Senior Information Officer
Information Resource Centre
Research and Clinical Effectiveness Unit
Chartered Society of Physiotherapy
14 Bedford Row
London
WC1R 4ED
http://www.csp.org.uk
Tel: 020 7306 6619
Fax: 020 7306 6611
SOURCES OF CONSUMER HEALTH INFORMATION
Contents
* Introduction
* Organisations
* Reference Books and directories
* Libraries
* Statistical information
* Databases
* World Wide Web
* Websites and Internet gateways
* Electronic mailing lists
* Physiotherapy related websites
* Health news
* CSP Publications
* Bibliography
Organisations
College of Health
The College of Health is a national charity set up to represent the
interests of patients and promote patient-centred care. The college aims to
help people keep themselves healthy and look after themselves better when
they are ill, give information to people who use and work in the NHS to
help
them make the best use if it, encourage and help providers of health care
to
put patients' needs first, improve the quality and responsiveness of
services through consumer audit and research, train people in consumer
based
research techniques and user involvement and represent the interests of
health service users to policy makers.
St Margaret's House, 21 Old Ford Road, London, E2 9PL
Telephone: 020 8983 1225
Email: [log in to unmask]
Internet: http://homepages.which.net/~collegeofhealth/who.htm
Contact a family
Contact a Family (CaF) provides support and advice to parents whatever the
medical condition of their child. The website includes a directory of
specific conditions and rare disorders. If information is not available on
the website it is still worth contacting CaF as they may have information.
Contact a Family, 170 Tottenham Court Road, London W1T 7HA
Telephone: 020 7383 3555 (Contact Line)
Email: [log in to unmask]
Internet: http://www.cafamily.org.uk/
Consumer Health Information Consortium (CHIC)
CHIC is a unique, autonomous organisation for those interested in the
provision of health information to the public. CHIC is a support
organisation which provides training, encourages good practice and promotes
the principle of free, open access to health information for all.
Email: [log in to unmask]
Internet: http://omni.ac.uk/CHIC/
CHIQ - Centre for Health Information Quality
The Centre for Health Information Quality (C-H-i-Q) works with information
producers and providers to raise standards in consumer health information.
CHIQ is working to ensure that all patient information is clearly
communicated, is evidence based and involves patients throughout
production.
Highcroft, Romsey Road, Winchester, Hampshire, SO22 5DH
Tel: 01962 849100
Internet: http://www.hfht.org/chiq/index.htm
Consumers' Association
2 Marylebone Road
London NW1 4DF
Tel: 020 7830 6000
Fax: 020 7830 6220
E-mail: [log in to unmask]
Department of Health
PO Box 777
London
SE1 6XH
Internet: http://www.doh.gov.uk
General Consumer Council for Northern Ireland
Elizabeth House, 116 Holywood Road, Belfast, BT4 1NY
Tel 028 9067 2488
Email: [log in to unmask]
Health Promotion England
Health Promotion England develops and delivers public education campaigns
and health promotion in key areas of health policy; alcohol, children and
families, drugs, immunisation, older people and sexual health.
40 Eastbourne Terrace, London, W2 3QR
Tel: 020 7725 9030
Internet: http://www.hpe.org.uk/
Help for Health
The Help for Health Trust is the leading supplier of consumer health
information in the United Kingdom. The Trust is an independent,
not-for-profit charitable organisation based in Winchester, Hampshire and
is
at the forefront of providing a range of quality information services and
database products to our customers and enquirers.
Highcroft, Romsey Road, Winchester, Hampshire, SO22 5DH
Telephone: 01962 849100
Internet: http://www.hfht.org
NHS Direct Online
Telephone: 0845 4647
Internet: http://www.nhsdirect.nhs.uk/
Patients Association
PO Box 935, Harrow, Middlesex, HA1 3YJ
Telephone: 020 8423 9111
Internet: http://www.patients-association.com/intro.htm
Plain English Campaign
This is an independent organisation fighting for crystal-clear language and
against jargon, gobbledygook and other confusing language. This
organisation
may prove useful for people writing patient information.
PO Box 3, New Mills, High Peak, SK22 4QP.
Tel: 01663 744409
Email: [log in to unmask]
Internet: http://www.plainenglish.co.uk/
Telephone helplines Association
The Telephone Helplines Association is a registered charity which works
with
helplines to ensure that callers receive the highest quality response. A
helpline search facility is available on their website.
4 Dean's Court, St Paul's Churchyard, London, EC4V 5AA
Tel: 020 7248 3388
Email: [log in to unmask]
Internet: http://www.helplines.org.uk/
Reference Books and directories
Contact a Family. (2001) The CaF (Contact a Family) Directory of Specific
Conditions and Rare Disorders. Contact a Family, London. (Contact details
above)
Garrill, S & Garill, J. (2000) Directory of British Self Help Groups and
Organisations. 6th edition. Moulton Printing of Highfield Road, Blackpool.
?10.00. G-Text, FREEPOST NWW6775, BLACKPOOL FY4 3GA
Email: [log in to unmask]
Internet: http://www.doctor.gp/help/
The directory contains details of over 820 British national self-help and
support organisations covering more than 750 conditions and needs. It is
alphabetically sorted, cross-referenced and indexed.
Henderson, SPA et al. (1998) Directory of British Associations and
Associations in Ireland. 14th ed. CBD Research Ltd. ISBN 0900246820.
Patient's Association (2001) The Health Address Book - a directory of
health
support groups. 3rd Edition. Royal Society of Medicine Press ISBN
1853154555
Reynard, KW (ed). (1998) Aslib Directory of Information Sources in the
United Kingdom. 10th edition. 1998. ISBN 0851424090. Published by Aslib,
the
Association for information management, Staple Hall, Stone House Court,
London, ECD3A 7PB. Internet: http://www.aslib.co.uk
This book contains over 11,500 information sources in the United Kingdom
comprising organisations on every imaginable topic and should be available
in public libraries.
The Voluntary Agencies Directory. (2000) NVCO Publications, London. ISBN
071991552X.
This directory provides contacts in education and social service
organisations, community support groups, contacts for voluntary work and
international aid organisations.
Libraries
Find your local medical library
National Electronic Library for Health
http://library.bma.org.uk/html/libfind.html
A useful directory of libraries in the United Kingdom.
Core Resources Ltd. (1999) Core resources of healthcare information 1999.
Core Research Ltd. ISBN 0953481905. The aim of this guide is to provide
up-to-date details of the main healthcare information resources available
and relevant to the individual researcher and providers of the information
in the UK. Details of over 300 selected information resources have been
included.
Dale, P (ed). (1997) Guide to libraries and information sources in medicine
and healthcare. The British Library, London. ISBN: 0712308393.
Forrester, WH (ed). (2000) Directory of medical and healthcare libraries in
the United Kingdom and the Republic of Ireland 2000-2001. Library
Association, London. ISBN: 1856043789
Henderson, SPA et al. (1998) Directory of British associations and
associations in Ireland. 14th ed. CBD Research Ltd. ISBN 0900246820.
Madge, D. (2000) Directory of organisations in allied and complementary
health care. British Library, London. ISBN 0712308547. After a general
introduction to allied and complementary health care each chapter covers a
specific area such as acupuncture, herbalism or reflexology with a brief
description of the therapy and a list of information resources, that is
associations or societies with brief details of their information holdings.
The organisations for each therapy are listed by country. There is an index
of organisations.
McBurney, V. (1995) Guide to libraries in London. British Library, London.
ISBN: 0712308210
Wellcome Institute Library and Information Service
The Wellcome Trust offers an extensive range of library and information
services to the public, free of charge. Anyone with an interest in the
history of medicine, or in current issues surrounding health, medicine and
science, can access a wealth of information in the form of books, journals,
databases, archives and manuscripts. The visual record of medicine is also
well represented by a vast collection of prints, drawings, paintings, film,
video and photographs.
The Wellcome Building, 183 Euston Road, London NW1 2BE, UK
Tel: 020 7611 8722
Fax: 020 7611 8726
Email: [log in to unmask]
Internet: http://www.wellcome.ac.uk/en/1/lib.html
Statistical information
Department of Health Statistics & Surveys Homepage
www.doh.gov.uk/public/stats1.htm
Government Statistical Service
http://www.doh.gov.uk/public/stats1.htm
Statbase
http://www.statistics.gov.uk/statbase/mainmenu.asp
Office for National Statistics,
The Library, Drummond Gate, 1 Drummond Gate, Pimlico, London SW1V 2QQ.
Tel 01329 842511
Internet: http://www.statistics.gov.uk
Databases
CHID - Combined Health Information Database
http://www.chid.nih.gov/
Health Source Plus
This consumer health database provides information on many health topics
including the medical sciences, psychology, food sciences and nutrition,
childcare, sports medicine, health care law and general health. Available
on
CD-ROM or online by subscription from:
EBSCO Subscription Services, Division Headquarters, Birmingham, AL USA
Internet: http://www.epnet.com/database.html#hp
HEBS Databases
http://www.hebs.scot.nhs.uk/healthcentre/lib/lib.htm
The Health Education Board for Scotland produce databases of health
promotion projects, a leaflets catalogue, statistics and support groups
which are all available on their website.
MEDLINE Plus
http://medlineplus.nlm.nih.gov/medlineplus/
The National Library of Medicine's MEDLINEplus pages are designed to direct
you to resources containing information that will help you research your
health questions. They are designed for educational use only and are not
intended to replace advice from a health professional. These pages provide
a
carefully selected list of resources, not a comprehensive catalogue.
Contains dictionaries for definitions of medical terms, links on common
diseases and conditions, publications and news for reading online,
organizations providing information to consumers, a range of databases are
available for articles and information (including MEDLINE) and
clearinghouses from which information can be obtained.
NHS A-Z Help Direct
http://www.nhsatoz.org/nhsd/
Help-Direct is a comprehensive, searchable database of self-help and
support
groups and organisations, covering the whole of the country, available to
the public on the internet.
Information is continually updated with local groups being added for many
areas. GP, Pharmacy, Optical and Dentist information is also available for
some areas.
Websites and Internet Gateways
American Medical Association Patient Information
http://www.ama-assn.org/ama/pub/category/3158.html
Biome
http://www.biome.ac.uk
BIOME is a collection of gateways which provide access to evaluated,
quality
Internet resources in the health and life sciences, aimed at students,
researchers, academics and practitioners.
Charities Direct
http://www.caritasdata.co.uk/
CharitiesDirect is a FREE web service featuring financial and contact
information on the UK's top 10,000 charities.
Charity Choice
http://www.charitychoice.co.uk/
The encyclopaedia of charities on the internet.
Charity Commission
http://www.charity-commission.gov.uk/
The Charity Commission is here to give the public confidence in the
integrity of charities in England and Wales. Includes a section on advice
and publications.
Cochrane Collaboration Consumer Network
http://www.cochraneconsumer.com/
Department of Health Helplines
http://www.doh.gov.uk/phone.htm
DIRLINE
http://sis.nlm.nih.gov/dirline/
DIRLINE (Directory of Information Resources Online) is the National Library
of Medicine?'s (US) online database containing location and descriptive
information about a wide variety of information sources including
organisations, research resources, projects, databases, and electronic
bulletin boards concerned with health and biomedicine.
Discern
http://www.discern.org.uk/
DISCERN is a brief questionnaire which provides users with a valid and
reliable way of assessing the quality of written information on treatment
choices for a health problem.
DISCERN can also be used by authors and publishers of information on
treatment choices as a guide to the standard which users are entitled to
expect.
Health Finder
http://www.healthfinder.org/
healthfinder? is a free gateway to reliable consumer health and human
services information developed by the U.S. Department of Health and Human
Services. Information is provided on online publications, clearinghouses,
databases, web sites, and support and self-help groups, as well as the
government agencies and not-for-profit organizations that produce reliable
information for the public.
Health Helplines in Scotland
http://www.scotland.gov.uk/faq/hth-free.asp
Health on the Net
http://www.hon.ch/
The Health On the Foundation Organization mission is to guide lay persons
or
non-medical users and medical practitioners to useful and reliable online
medical and health information.
Health in Focus
http://www.healthinfocus.co.uk/
HEALTHINFOCUS has been designed to be freely accessible to everyone wishing
to access unbiased, trustworthy health information. It aims to provide
facts
about a disease, how you can expect to be treated, the level of medical
care
you can expect and the treatments you are likely to receive in the UK.
Health insite
http://www.healthinsite.gov.au
This site aims to provide a wide range of up-to-date and quality assured
information on health topics.
Health Promotion Agency (Northern Ireland)
http://www.healthpromotionagency.org.uk/
The Health Promotion Agency for Northern Ireland (HPA) was set up as a
special agency of the Department of Health, Social Services and Public
Safety with the mission to make health a top priority for everyone in
Northern Ireland.
Health Watch by Medscape
http://healthwatch.medscape.com/medscape/p/gcommunity/ghome.asp
CBSHealthWatch is committed to providing authoritative medical content
written for the consumer as well as access to our professional-level
content.
Healthworks Online
http://www.healthworks.co.uk/
Healthworks delivers a range of health and medical information for medical
professionals and Internet content providers. Services include;
</content/medsource/index.asp> custom built medical content for your web
site or Internet driven projects, a medical CD-ROM collection on the web,
computer aided learning packages, MEDLINE and latest medical news.
Healthtouch
http://www.healthtouch.com/
A resource that brings together valuable information from trusted health
organizations.
HealthWeb
http://healthweb.org/
InteliHealth
http://www.intelihealth.com
Medisearch
http://www.medisearch.co.uk/
Mirago Health is a search engine aimed at providing a specialist,
searchable
index of Authoritative UK and International Medical sites.
Medical Matrix
http://www.medmatrix.org
Medical Matrix is a free directory of selected medical sites on the
Internet. Each site listing has been carefully evaluated by reviewers from
our panel of physicians and medical librarians. Medical Matrix lists only
those sites that meet criteria for information quality and site usability,
with an emphasis on usefulness to healthcare practitioners.
National Association of Citizen Advice Bureaux
http://www.nacab.org.uk/
National Council for Voluntary Organisations
http://www.ncvo-vol.org.uk/
National Electronic Library for Health (NeLH)
http://www.nhs.uk/nelh/
The role of the NeLH will be to provide health care professionals and the
public (through NHS Direct Online and the New Library Network) with
knowledge and know-how to support health care related decisions. NeLH will
provide easy access to best, current knowledge and know how, improve health
and healthcare, clinical practice and patient choice.
National Electronic Library for Health (NeLH) Physiotherapy Portal
http://www.nhs.uk/nelh/physio
National Health Promotion Agency website for Wales
http://www.hpw.org.uk/
National Institutes for Health - Consumer Health Information (US)
http://www.nih.gov/health/consumer/
This website provides access to patient focused leaflets on a variety of
topics.
NHS Direct Online
http://www.nhsdirect.nhs.uk/
The NHS is committed to providing quicker and easier access to healthcare
services. NHS Direct is a 24-hour nurse-led helpline providing confidential
healthcare advice and information on: what to do if you're feeling ill,
health concerns for you and your family; local health services and
self-help
and support organisations.
NHS A to Z Help Direct
http://www.nhsdirect.nhs.uk/a-z/
NHS A-Z HelpDirect is used by health and social care professionals, the
voluntary sector, helplines and health information services, human resource
managers and the public. It is available on the Internet as part of NHS
Direct Online and also as a stand-alone site.
Netdoctor
http://www.netdoctor.co.uk/
NetDoctorPro is a premium resource for UK doctors and health professionals
with unlimited access to some of the world's most valuable databases and
health resources.
NMAP
http://www.nmap.ac.uk
A gateway of quality internet sites in nursing and allied health
OMNI (Organising Medical Networked Information)
http://www.omni.ac.uk
A gateway of quality internet sites in the area of medicine
Online National Institutes of Health - Consumer Health Publications
http://www.nih.gov/health/consumer/conicd.htm
Patient UK
http://www.patient.co.uk
Patient UK is a directory of UK websites that provide information on
health,
disease and illness. The aim is to list the most reputable and reliable
sources of UK health information
Public and Patient Information
http://www.oliveweb.clara.net/n17pubin.htm
This website provides a list of links to public and patient information
including self help groups.
Quackwatch
http://www.quackwatch.com/
Quackwatch is a nonprofit corporation whose purpose is to combat
health-related frauds, myths, fads, and fallacies
Rockerfeller Medical Library Patient Support Information
http://www.ion.ucl.ac.uk/library/patient/patient-support.html
Surgery Door
http://www.surgerydoor.co.uk/surgerydoor/
The aim of this website is to provide the most comprehensive and useful
online health service in the UK and to offer this free of charge to UK
citizens.
Quick - Quality Information Checklist
http://www.quick.org.uk/
UK Health Centre - The guide to UK medical Information on the web
http://www.healthcentre.org.uk
The Health Centre aims to be a guide through the huge amount of medical
and
health information from the UK that is available on the internet.
Virtual Encyclopaedia of Health and Medicine
http://www.refdesk.com/health.html
WHICH? Online
http://www.which.net/health/contents.html
Includes a specific section on health comprising treatments, drugs, the
NHS,
nutrition advice - our information will keep you well-informed about
healthy
living.
Wired for Health
http://www.wiredforhealth.gov.uk
This website aims to provide accurate and engaging information on health
for
teachers and learners, to provide information on the Healthy Schools
Programme, a joint initiative between the Department of Health and the
Department for Education and Employment and to provide information about
national health policies and initiatives.
YAHOO: Health & Medicine
http://www.yahoo.com/Health/Medicine
Mailing lists
Consumer Health Informatics
http://www.jiscmail.ac.uk/lists/consumer-health-informatics.html
Physiotherapy related websites
Chartered Society of Physiotherapy
http://www.csp.org.uk
The CSP website includes a member centre, health centre, media centre,
careers information, information about the CSP, the library, publications
and jobs.
PhysioFirst
http://www.physiofirst.org.uk
This is the site for the Organisation of Chartered Physiotherapists in
Private Practice and it is possible to find a physiotherapist in different
areas by searching on this site.
PTGlobalNet
http://ptglobal.net/
Physical Therapist.com
http://www.physicaltherapist.com
This American site includes mailing lists, a library, events, courses,
jobs
and a bulletin board.
Physical Therapy : the web space
http://www.automailer.com/tws/
This site includes; texts and journals, schools, organisations, diseases
and
injuries and electronic discussion lists.
Physiobase
http://www.physiobase.com
This site includes information on courses, jobs, a library, a directory and
chat.
Physiosonline
http://www/physiosonline.com
This site includes information on courses, jobs, news and links.
Health News
BBC Health and Fitness
http://www.bbc.co.uk/health/
CBS Health watch by Medscape
http://healthwatch.medscape.com/medscape/p/gcommunity/ghome.asp?.
HealthComms Online - the free email newsletter on health communications
http://www.healthcomms.com/
Professionals involved in communicating health messages to patients and the
public need to stay in touch with the most important developments in health
communications.
Reuters Health
http://www.reutershealth.com/
Medscape
http://www.medscape.com/
Doctor's Guide
http://www.docguide.com/
Health news
http://www.health-news.co.uk
CSP Publications
A range of publications are produced by different departments at the
Chartered Society of Physiotherapy. The Communications Department produce a
range of patient education leaflets. For an up to date list of these
leaflets telephone the Communications Department on 020 7306 6620. The
Health Centre on the CSP website is also a useful source of information
http://www.csp.org.uk. For other CSP publications see the Electronic
Library
section on the CSP website or request a publications list from the CSP.
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