Friday, 21 June 2013

A collection of useful patient information sources

These are just a few resources to help you find good quality online patient information:

Monday, 19 December 2011

Personal experiences

I have just come across a very inspirational blog written by a young woman suffering from cancer. "Written Off" is published by Ellie Jeffery, and in her blog she describes her experiences as she battles cancer. It is a brilliant blog. She describes her treatments, her experiences with alternative therapies in combination with chemotherapy, and also highlights charities that support cancer sufferers. In her latest post, she describes how she copes with hair loss and provides excellent advice for limiting the effects. She is a wonderful woman, and I am so impressed with her positive attitude. Her blog is informative, and most importantly useful.

Sunday, 27 November 2011

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.

Monday, 31 October 2011

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

Friday, 21 October 2011

Testing treatments: better research for better healthcare

Testing Treatments provides a thought-provoking argument, and explains how patients can work with doctors to achieve better, more reliable, more relevant research, with unbiased or 'fair' trials.

This book, aimed at both patients and professionals, is freely available here, and raises questions such as How do we know whether a particular drug, therapy or operation really works, and how well? How reliable is the evidence? Are clinical trials truly unbiased? And is current research focused on the real needs of patients?

A downloadable version of this text is available online here and paperback and eBook copies can be purchased from the publisher, Pinter and Martin.

Freely downloadable texts of the 2006 and 2011 editions of Testing Treatments, together with reviews and translations of the first edition, are available here.

Sunday, 11 September 2011

NHS Choices translation services

NHS Choices now offers an auto-translation service which translates information on NHS services, public health issues and wellbeing advice into a multiple of languages. Over 800 leaflets on conditions and treatments and health and wellbeing advice can be translated, using the translation tool, found at the top of the web-page, into the following languages:
Afrikaans, Albanian, Arabic, Belarusian, Bulgarian, Catalan, Chinese (Simplified), Chinese (Traditional), Croatian, Czech, Danish, Dutch, Estonian, Filipino, Finnish, French, Galician, German, Greek, Haitian Creole, Hebrew, Hindi, Hungarian, Icelandic, Indonesian, Irish, Italian, Japanese, Korean, Latvian, Lithuanian, Macedonian, Malay, Maltese, Norwegian, Persian, Polish, Portuguese, Romanian, Russian, Serbian, Slovak, Slovenian, Spanish, Swahili, Swedish, Thai, Turkish, Ukrainian, Vietnamese, Welsh, Yiddish

Thursday, 30 June 2011

Taking part in research

In February 2010, I posted a blog called Clinical Trials. This post is building on that one because I just wanted to tell you about some updates.

Firstly, the EU Clinical Trials Register website is now open to the public, and allows you to search for information on clinical trials in European Union (EU) member states and the European Economic Area (EEA) and clinical trials which are conducted outside the EU/EEA if they form part of a paediatric plan. This means that you can keep up with details of the latest treatments available, and possibly even become involved.

Also, if you are interested in taking part in research, take a look at researchmatch, which is a registry of volunteers who are interested in taking part in research.

If you decide that you are interested in taking part in a clinical trial, please do look at the previous post,  and do speak to your doctor or other health professional and your family. There are often risks involved and it is vital that you are fully informed.