European Patient Group Directory

The 4th edition of the European Patient Group Directory, compiled by PatientView and published by Burston Marsteller, provides information about European patient groups who support policy development on a range of medical conditions. Each page lists a separate organisation, providing contact details and information about their activities. It is a useful tool for patients who need to find more supporting information, and it is freely available.

Read more here.

Free e-book to help make sense of health advice

“Smart Health Choices” is free to download and provides you with the tools for assessing health advice of any type.  The book has been written to help you make sense of health care advice and make the best decisions for you and those you care for.

Access an electronic version of Smart Health Choices here. 

Meet e-Patient Dave

TED is a nonprofit devoted to Ideas Worth Spreading. It started out (in 1984) as a conference bringing together people from three worlds: Technology, Entertainment, Design. Since then its scope has become ever broader. TED talks are short, inspirational videos, and one of their latest ones is called "Meet e-Patient Dave" and it is delivered by Dave deBronkart and it is truly fantastic. It is very moving, because Dave describes his battle with cancer but focuses on the need to involve patients in the decision-making process regarding their treatment regime. Dave talked about some brilliant resources to support patients, including

• Association of Cancer Online Resources - which provides resources and forums for people with cancer and related disorders
• Visible Body - a 3D atlas of the human body 
• Google Body - another 3D atlas of the human body

  

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1492155/pdf/jgi_30261.pdf

Health news

Media reporting of health news can be confusing as they tend to publish the highlights to tempt the reader, and often don't make it very clear where the story originates from, eg the original reseach study, so you don't get the full picture.

NHS Choices' Behind the Headlines resolves this issue by giving you an unbiased and evidence-based analysis of health stories that make the news. Each day the NHS Choices team selects health stories that are making headlines. These, along with the scientific articles behind the stories are sent to Bazian, a leading provider of evidence-based healthcare information. Bazian's clinicians and scientists analyse the research and produce impartial evidence-based assessments, which are edited and published by NHS Choices.

Each summary provides the background to the story, explaining where the story originally comes from, and which newspapers have covered the story. There is a description of the type of research and how it has been applied to the topic, followed by a summary of the results, a description of how the results were interpreted, and a conclusion. The summary then provides links to the newspaper headlines, and then to the original scientific research. Where appropriate, there are links to support groups.

All of this is only a couple of pages long, so it is quick to read, and more reliable than the newspaper headlines. Categories of content include life style, parts of thebody, medical practice, and clinical conditions.

NHS Choices

As a starting point, I thought it would be useful to highlight some first ports of call for patient information on common conditions. The key one for NHS patients in England is NHS Choices. Scotland and Wales have their own versions - Scotland's Health on the Web and Health of Wales Information Service. NHS Choices has several useful features:

1. Health A-Z
   This feature tells you all you need to know about more than 750 conditions and treatments. You can search by A-Z, by body map, or by subject. There is also a search box so that you can type in your condition. For each condition, there is information about symptoms, causes, diagnosis, treatment, and prevention, together with details about further reading and relevant support groups. Where appropriate, there are clearly labelled diagrams. The inormation is written by health professionals, so there is no bias regarding teatment type, and it is relevant, as it is written for NHS England patients. Some conditions provide "Real stories", which are videos of patients talking about their experiences with a particular condition. In addition to all the information about conditions, there is also a section specifically about operations, tests, and procedures so that you can get an idea of what to expect.
2. Videos and blogs
   There are more than 500 videos, giving advice on health matters, sharing experiences, and describing treatments and procedures. Topics include, what to do when babies cry, infections and viruses, glaucoma, cancer, teens, and foot health.
3. Local services
   You can also use this site to find out where your local GP, chemist, hospital, maternity service, mental health service, alcohol service, or dentist is. All you have to do is type in your postcode to find details of health services closes to you.
4. Behind the Headlines
   This is an excellent service, which provides an unbiased and evidence-based analysis of health stories that make the news. Each day a selection of stories that are making the headlines is identified and analysed alongside the scientific articles behind the stories. Short, impartial, evidence-based assessments are produced and these are aimed at health professionals and patients.
5. Carers Direct
   This section of the site provides information, advice and support for carers. There is guidance on money and legal issues, a guide to caring, and also advice on carer wellbeing and rights.
6. Live Well
   Preventing illness and improving fitness is always important, and NHS Choices offers plenty of ideas, advice, and tools to ensure a better quality of life. Have a browse and fnd out about better nutrition, safer sex, quitting smoking, losing weight, and managing your alcohol intake. Just the thing for keeping your new year resolutions!

Information overload

When you or someone you care about is first diagnosed with an illness, lots of questions will be raised. So, where do you get the answers to these questions? You could go to your library or ask friends, but if it is a private matter, you might want to find the answer yourself.

Many people look on the Internet, and this can be a help, but without knowing where to look, it can be a hindrance. There is so much information on the Internet. Some has been written by experts, some by members of the public with an interest, some by people who have products to sell. But how do you tell what is good information and what is bad. Over the next few months, I will offer some guidance for identifying good quality patient information on the Internet. The key thing, - and this is difficult to do when you are worrying about a condition – is to ask some sensible questions. For example:

• How old is this information? – is it still applicable or is there a better treatment available now?
• Who has written it? – health professional, patient, or drug company – a patient might not be able to give an objective viewpoint and a drug company might be biased.

A useful checklist to use is the Discern tool () which helps you evaluate the quality of consumer health information.

As this blog grows, I will introduce you to other useful websites. If you have any comments or suggestions, please let me know. As I am UK-based, the content will be aimed at UK patients. However, the concepts will apply to all patients looking for good quality information.

Aim of Patients on the Net

This blog has been created to help people identify good quality patient information on the Internet. My name is Caroline De Brún, and I have been a healthcare librarian in the National Health Service England since 1999. I have recently co-written a book for health professionals called Searching Skills Toolkit: Finding the Evidence and, having watched friends and family struggle to find patient information on the Internet, I thought a similar resource would be useful for patients.