Health information: finding reliable sources on the internet
Updated August 2008
Please note that the websites listed below are unrelated to the BMA and their inclusion here does not imply BMA recognition or approval. We can accept no responsibility for their content.
- Introduction
- Articles and general guidance on searching for health information
- Medical 'gateways' and health information databases:
- NHS National Library for Health
- BMJ Group
- US National Library of Medicine - Other useful health information websites
- Healthcare organisations and voluntary groups
It is estimated that around 80% of patients actively seek information related to their health problems (Reference 1).
In 2004, the Department of Health (DH) highlighted the importance of patients having access to high quality health information in their report 'Better information, better choices, better health - putting information at the centre of health' (Reference 2).
However, while there is a vast amount of high quality medical information on the internet which can help patients make informed decisions about their healthcare, some information is of variable quality and intent.
Some attempts at ‘kite-marking’ health information have been made. However, it is recognised that this is an extremely difficult undertaking due to the vast and increasing volume of information on the internet and the very wide range of material which can be described as 'health information'.
The Department of Health is currently developing a new health information accreditation scheme which aims to guarantee the quality of health information available to patients through a new kite-marking scheme. Subject to testing, the scheme is due to be launched in 2008. We will provide further details about the scheme once it has been launched.
In 2002, the BMJ devoted an issue to the subject of health information on the internet (Reference 3). Authors found that, at that time, while many tools had been used to rate the quality of information on the internet, some had apparently not been validated and a significant number were discontinued soon after their introduction.
Indeed, using a set of guidelines or a checklist of points to consider, may be just as useful for patients and the public in assessing the quality of health information.
Factors to take into account when assessing health websites would include:
- Is the site regularly updated? Information on the review process, for example the most recent review date, should be given on the site.
- Does the site give references and sources for the information it provides?
- Does the site provide information about who compiled the site (the organisation or individual)?
- Are details provided on who sponsors the site eg in the 'About us' section?
- Does the organisation provide an address / or other contact details?
- Spelling and grammatical mistakes – more than a couple of these indicate a weak site that has not been properly edited or reviewed.
- Is the organisation trying to sell something?
Below are links to articles and guidance which give further advice on searching for reliable health information. These should be viewed as pointers only; not all suggestions will apply to everyone.
- The BMA’s General Practitioners Committee guidance on searching the internet for medical information - tips for patients (Reference 4).
- The Health On the Net Foundation (HON) is a not-for-profit organisation based in Switzerland. HON was established to guide lay persons and medical practitioners to useful and reliable sources of online medical and health information. They have produced a simple code of conduct for medical and health websites.
- The Judge project has developed guidelines for assessing the quality of health information on websites, based on the views of health consumers and support groups. Two sets of guidelines have been produced (i) to help health consumers make informed choices about health websites and (ii) to assist support groups produce their own high quality websites for patients. Access the Judge website and guidelines here.
(The Judge project is a partnership between Contact a Family, a UK charity helping families to care for children with disabilities and/or special needs, and the Information, Knowledge and Systems Research Group at Northumbria University). - Medline Plus, a service of the US National Library of Medicine and the National Institute of Health in the US, offers useful advice on its website about how to assess medical information resources on the internet.
Medical gateways and reputable health databases are good places to start when looking for medical literature. It is helpful to use these, rather than general search engines such as Google, to immediately narrow your search, when you are looking for evidence-based, peer-reviewed (ie reviewed by other doctors/scientists) medical articles.
Two of the most important medical gateways are the NHS National Library for Health (NLH) - which now hosts the content of the former National electronic Library for Health (NeLH) - and the US National Library of Medicine.
The BMJ Group also produces BMJ Clinical Evidence and BMJ BestTreatments, in addition to the British Medical Journal itself.
NHS National Library for Health (NLH)
The NHS National Library for Health is working with NHS libraries and universities to develop a digital library to provide NHS staff, patients and the public with the knowledge to support their healthcare decisions.
The following individual databases/resources are important health information sources available via the NLH website. For ease of use, the links provided below will take you directly to the health database concerned.
(i) Evidence-based reviews
Evidence-based health care "is the conscientious use of current best evidence in making decisions about the care of individual patients or the delivery of health services" (Reference 5).
The following resources are two of the most important evidence-based, medical information sources on the NLH.
- Bandolier
Bandolier first appeared as an independent journal about evidence-based healthcare in February 1994. It has appeared monthly ever since and has become a respected source of evidence-based healthcare information in the UK and worldwide, for both healthcare professionals and patients. Most of Bandolier's online health information is located in the 'Knowledge Library.'
Although Bandolier has had to rely on sponsorship to develop its health information resources, sponsorship is acknowledged at the top of each topic heading and sponsors have no influence or control over the information produced.
Bandolier also has a Healthy Living zone on its website, which looks at the latest research and advice on staying healthy, including healthy eating, healthy exercise, healthy use of alcohol, tea and coffee, weight control and smoking, and more specialised subjects such as the use of mobile phones.
Bandolier recently started a new section on its website looking at the risks associated with different forms of treatment, called Risk, chance and probability. This resource should help patients to understand the risk factors associated with some types of treatment (for example the harms and benefits of taking low dose aspirin and the risks associated with having an epidural).
- The Cochrane Library
The Cochrane Library is another very useful source of independent evidence about the effectiveness of different forms of medical treatments. It includes reliable evidence from Cochrane medical reviews, other respected medical treatment reviews, and the results of clinical trials.
Cochrane systematic reviews are based on the best available information about the use of different types of medical treatments. They explore the evidence for and against different treatments (including medication, surgery, education, etc) for specific medical conditions.
The Cochrane Library is freely available to NHS staff, patients and the public in England through Wiley InterScience. It is also available in some countries outside the UK.
There is a special section for patients on the Cochrane Library website, which explains more about the content of the Library, including definitions of terms such as 'evidence-based healthcare' and 'systematic review'.
There is a Search facility on the home page, enabling users to retrieve relevant Cochrane medical reviews. One can also search by Topic or go to the full A-Z listing of all systematic reviews. Previous reviews are also regularly updated.
Just two examples of 'New Reviews' during April 2008 include:
- antioxidant supplements for prevention of mortality in healthy participants and patients with various diseases;
- interventions for treating wrist fractures in children (Reference 6).
- Clinical Knowledge Summaries (CKS)
Clinical Knowledge Summaries (CKS) are supported by the NHS and accessible via the NHS NLH. They represent up-to-date sources of clinical knowledge which are intended to help healthcare professionals and patients manage the conditions most commonly seen in general practice.
From the home CKS page, one can browse clinical topics (under headings from allergies to women's health) and find out about the medicines used to treat these specific conditions.
Hundreds of topics are covered in all, including many conditions that are routinely managed by non-medical health professionals, such as nurses and pharmacists. All the information, is freely available to the public, including the full text of the Topic Reviews intended for health professionals.
There is also a Patient Information Section, providing health leaflets on over a hundred health subjects (which can be browsed and downloaded) and an 'answers to common health questions' section, for example on accidents and first aid, lifestyle and travel health. These are based on questions asked by the public when using NHS Direct or the online enquiry service.
- National Institute for Health and Clinical Excellence (NICE)
On 1 April 2005, the former National Institute for Clinical Excellence - NICE - joined with the Health Development Agency to become the National Institute for Health and Clinical Excellence (also known as NICE).
NICE is an independent organisation responsible for providing national guidance on promoting good health and on preventing and treating ill health. Information about NICE can be accessed via the NLH website or you can go directly to the NICE website.
NICE clinical guidance covers hundreds of topics in almost all areas of medicine, including assessments of laser eye surgery, cancer treatments and treatments for mental health problems. NICE guidance falls into several different categories:
- cancer service guidance: the focus of this guidance is to ensure the appropriate commissioning of services to treat cancer in England and Wales;
- clinical guidelines: covering the appropriate clinical treatment of people with a very wide range of diseases and conditions, including cancer, in England and Wales;
- interventional procedures: guidance making recommendations about whether interventions used for the diagnosis or treatment of diseases are safe enough and effective enough for routine use within the NHS (for example the use of electromagnetic radiation);
- public health intervention guidance: providing recommendations on types of activities (interventions) that should help to reduce people’s risk of developing a disease or condition eg smoking cessation
- public health programme guidance: dealing with broader action for the promotion of good health and the prevention of ill-health (for example guidance on physical activity and the environment and on maternal and child nutrition);
- technology appraisals: providing guidance on the use of new and existing medicines and treatments within the NHS in England and Wales;
The NICE website also provides updated collections of their treatment guidance, by broad medical condition: - blood and immune system
- cancer
- cardiovascular
- central nervous system
- diagnostic procedures
- digestive system
- ear and nose
- endocrine, nutritional and metabolic
- eye
- gynaecology, pregnancy and childbirth
- infectious diseases
- injuries, accidents and wounds
- mental health and behavioural conditions
- mouth and dental
- musculoskeletal
- public health
- respiratory
- skin
- surgical procedures
- therapeutic procedures
- urogenital
All NICE guidance applies to the NHS in England. You can find out which of the above types of NICE guidance applies in Wales, Scotland and Northern Ireland on the NICE website.
In Scotland, NHS Quality Improvement Scotland advises on implementing NICE technology appraisals in the health service in Scotland, providing advice and guidance on effective clinical practice and non-clinical standards of care.
In Northern Ireland, the Department of Health, Social Services and Public Safety advises on implementing NICE clinical guidelines and technology appraisals.
In addition to providing treatment guidance for use by health professionals, NICE has more recently attempted to involve patients, carers and the public in the development of their guidance.
The NICE website has a section on patient and public involvement, including information on their new Patient and Public Involvement Programme (PPIP) - which 'provides information, support and training to patients, carers and members of the public with an interest in NICE guidance'.
NICE has published a 'Guide for Patients and Carers' on contributing to a NICE clinical guideline (2006), which you access via the link above. This guidance aims to help organisations that represent the interests of patients and carers to take part in the development of NICE clinical guidelines and also to help those bringing a patient or carer's perspective to a 'guideline development group' to understand their role.
(iii) Specialist Electronic Libraries
The NLH can provide internet users with access to specialist electronic libraries covering conditions such as cancer, child health, diabetes, mental health, muskuloskeletal diseases, oral health, respiratory disorders, skin disorders and women's health. The 30 specialist health libraries can be accessed from the home page of NLH's website and they provide both clinical information and useful links.
(iv) Medicines
British National Formulary
The British National Formulary (BNF) provides up-to-date information on the selection, dispensing and administration of medicines. It is aimed at health professionals, but is also a useful reference work for the interested lay person. The latest edition of the BNF is BNF 55, March 2008. Access requires user registration, although it is free.
A new BNF for Children (BNFC) was launched in September 2005 with updated editions published in 2006 and 2007. Access to this website also requires user registration.
BMJ Group
The BMJ Group produces an extensive range of information for health professionals and patients, including the British Medical Journal and more than 35 other journals, such as Archives of Disease in Childhood, Heart and Thorax. Information about all BMJ Journals is available on their website.
Two of the BMJ Group's key evidence-based resources are:
BMJ Clinical Evidence
BMJ Clinical Evidence, produced by the BMJ Group, is an international source of medical information, providing a regularly updated guide to the latest evidence on the effectiveness of a wide range of different medical treatments. It helps to promote informed decision-making by summarising what is known - and not known - about more than 300 medical conditions.
It is intended to provide doctors and other health professionals with access to the very latest and most relevant medical knowledge, to help them with their treatment decisions. There is a list of medical conditions covered by BMJ Clinical Evidence on their website (see Full Review list).
BMJ BestTreatments
BMJ BestTreatments is based on BMJ Clinical Evidence (see above). BMJ BestTreatments is a patient-friendly information resource designed to help patients find out about the most up-to-date research on treatments for a very wide range of common medical conditions, including anorexia, bulimia, epilepsy, dementia, depression, ear infections, heart failure, migraine, obesity, various types of cancer and varicose veins.
BMJ BestTreatments rates around 1500 health and medical treatments, based on how well they work.
Access to BMJ BestTreatments is now by payment; users can either apply for 30 day access to the whole site or can purchase specific heath topics.
A significant part of the content of BMJ BestTreatments is also available, free-of-charge, on the website of the pharmacy company, Boots, following an agreement in 2007 between Boots and the BMJ Group. The information is available under 'askboots' (see the A-Z listing for the medical topics covered).
US National Library of Medicine
Many useful health databases are accessible via the US National Library of Medicine (NLM), based at the National Institute of Health (NIH) in Maryland.
These include:
- Medline Plus
Medline Plus provides information on over 750 conditions and diseases (see the Health Topics section), and access to information about medicines and supplements, in addition to a medical encyclopaedia, a medical dictionary and a medical news section. It is updated daily. - PubMed
PubMed, a service of the National Library of Medicine, includes over 17 million citations for biomedical articles back to the 1950s. These citations are from MEDLINE and additional life science journals. It includes links to both full text articles and other related resources. Medline is the largest component of PubMed.
An Environmental Health & Toxicology database, with information on:
- Chemicals and Drugs
- Diseases and the Environment
- Environmental Health
- Occupational Safety and Health
- Poisoning
- Risk Assessment and Regulations
- Toxicology
- Pesticide Exposure
- a guide to finding health information
- a tutorial on evaluating health information
- health information for older adults
- a household products database offering health and safety information
- a genetic conditions and treatments reference guide
- BBC News Online (Health) includes a Medical Notes Library, covering more than 150 specific medical/health topics (arranged in an A-Z index). The BBC's Health section also provides up-to-date news on health issues and in-depth information on heart disease, stroke, cancer and pregnancy. Access BBC News Online Health here.
- Database of Individual Patient Experiences (DIPEx)
The DIPEx website is designed for patients who have to undergo treatment and who would like to find out from other patients what the treatment was like - or what it is like to live with a particular condition. It is also aimed at carers, the families of patients and healthcare professionals.
The organisers of DIPEx are hoping to extend their database to include modules on over 100 illnesses and conditions, as well as covering topics such as immunisation, rare diseases, skin conditions, infertility and chronic illness.
Currently, DIPEx has 'patient experience' databases on: - Cancer and screening: breast cancer; breast screening; cervical cancer; bowel cancer; bowel screening; lung cancer; lymphoma; ovarian cancer; prostate cancer; PSA testing; teenage cancer; and testicular cancer
- Chronic health issues: chronic pain; rheumatoid arthritis; and HIV
- Young people's experiences: Sexual health of young people aged 18-25; teenage cancer; diabetes type 1 in young people; and young people with long-term health conditions
- Women's health: pregnancy and screening: pregnancy; antenatal screening; ending a pregnancy for a fetal abnormality; screening for sickle cell, beta thalassemia and other variants; breastfeeding; and making decisions about birth after a caesarian
- Heart disease: parents of children with congenital heart disease; heart attack; heart failure; and high blood pressure
- Immunisation
- Intensive care: patients' experiences; experiences of families and friends
- Living with dying
- Neurological: epilepsy; carers of people with dementia; and stroke
- Mental health: depression
You can find out more about DIPEx on their website.
- Dr Foster Ltd is an independent organisation which collects and analyses information on the availability and quality of health services in the UK. It has a dedicated section for the public on its website, including a Consultant Guide and a Hospital Guide. In addition, Dr Foster has produced treatment/information guides for patients on finding a birth unit, a breast cancer clinic, a complementary practitioner and/or an infertility clinic.
The Dr Foster website also offers a useful A-Z of Health section, providing information on more than a 1,000 common medical conditions and treatments.
All this information is available on the Dr Foster website.
- The Health on the Net Foundation (HON), based in Switzerland, provides access to an extensive database of articles on health issues via its Medical Web search facility. The HON website provides full information.
- Intute: Health and Life Sciences is a gateway to evaluated, high quality internet resources in the following subject areas:
Medicine
Nursing, Midwifery and Allied Health
Agriculture, Food and Forestry
Veterinary Medicine
Bioresearch
Natural history
From the 'Medicine' section of the Intute website (formerly known as OMNI), you can search their extensive medical database of articles using any simple medical term eg eczema or arthritis.
The Wellcome Trust provides additional information for Intute in the following areas, which you can link to from the Intute home web page (via the top menu):
Biomedical ethics - BioethicsWeb
History of medicine - MedHist
Public engagement with science and technology - Psci-Com
Intute is the result of a collaboration by a network of UK universities and partners, with subject specialists selecting and evaluating websites. It offers a free online search service.
- Malehealth, a website produced by the Men's Health Forum, is a comprehensive, independent online source of information on men's health problems. .
- NHS Choices is the newly launched NHS website. It hosts a Live Well section, aimed at providing advice on diet and exercise etc and a Health A-Z, offering the public information about hundreds of conditions and treatments, ranging from asthma to depression and hip replacements, with the help of a Body Map.
- NHS Direct Online is a useful gateway to patient-friendly health information, including NHS Direct Online's own Health Encyclopaedia, a self-help guide for the management of common health problems, and a 'common health questions' section (all of which is available in a number of different languages). It also provides information about local NHS services.
- Patient.UK, a health information website, is based on a collaboration between Patient Information Publications (a partnership between two GPs), in association with EMIS (Egton Medical Information Systems). It features almost 750 online patient information leaflets, some of which have been translated into other languages, and additional information on finding specialists and condition-specific support groups.
There are also sections on lifestyle and medicines. The aim of the Patient UK website is "to provide non-medical people in the UK with high quality information about health and disease".
Patient.UK now includes a section entitled PatientPlus which is more particularly aimed at health professionals, but which can also be accessed by the public.
- (Please note that the Patient UK website now carries commercial advertising, sometimes for products related to specific health conditions).
- Many of the Royal Colleges of medicine now provide health information for patients on their websites. For example, the Royal College of Psychiatrists provides information on depression, post traumatic stress disorder and sleep problems, while the Royal College of Anaesthetists offers information to patients on anaesthesia, including the risk factors associated with having an anaesthetic.
There is a full list of the medical Royal Colleges on the Academy of medical Royal Colleges website.
Some of the larger healthcare charities such as CancerBacup, Diabetes UK and the British Heart Foundation provide excellent information for patients on their websites (although it is advisable to watch out for the quality of information on the websites of lesser known health organisations and at who is sponsoring such websites).
For those seeking more information about a specific disease or condition, the section on our website Finding a self-help group or patient organisation provides advice on how to find the contact details of thousands of different self-help groups - including their websites.
References
- Assessing the quality of information to support people in making decisions about their health and healthcare, Picker Institute, November 2006. Available at: http://www.pickereurope.org/page.php?id=48
- Better information, better choices, better health: putting information at the centre of health, Strategy Document, Department of Health, 2004. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_409857
- British Medical Journal, Volume 324, issue 7337. Available at: http://www.bmj.com/content/vol324/issue7337/index.dtl
- Searching the internet for medical information - tips for patients, BMA, 2000. Available at: http://www.bma.org.uk/ap.nsf/Content/SearchingInternet
- The Cochrane Library website. For Patients. Available at: http://www3.interscience.wiley.com/cgi-bin/mrwhome/106568753/WhatAreSystematicReviews.html
- The Cochrane Library website. New Reviews. Available at:http://www.mrw.interscience.wiley.com/cochrane/cochrane_clsysrev_new_fs.html