In England, a new Secretary of State for Health, Andrew Lansley, has been installed and he has published "Equity and excellence: liberating the NHS", which outlines how the NHS will operate from now on. A key message in this report is about "Putting patients and public first". There will also be a greater focus on shared decision-making and access to information for patients; "Shared decision-making will become the norm."
What does this mean for patients? Patients are being encourage to be involved more in the decisions made about their treatments. Resources are being developed so that they become more informed and they are being give more access to their medical records. Patients are being given their own Health Space, a secure online health organiser, where they can book appointments, access their Summary Care Records, and keep track of information about weight, blood pressure, cholesterol levels and medication. There are links to good quality health information about common conditions, a key source being NHS Choices, but for rarer conditions, it can be very difficulty finding good quality, reliable consumer health information.
There are some key organisations supporting share decision-making:
Saturday, 16 October 2010
Decision aids
Decision aids are designed to help patients make informed decisions about their care.
The Ottawa Personal Decision Guide (OPDG) is designed for any health-related and/or social care decisions. It can help people with their decision making needs, plan the next steps, and track their progress in decision-making. It is currently available in English, French, Spanish, and Japanese.
This page will be updated as more decision aids are identified.
Rare conditions database
Although rare conditions are fairly common, it is very hard to find good quality information on them. Often, the content is written by patients and carers, which is fine, and always important to have the personal viewpoint, but it is important to bear in mind that there might be differences in the patient situations and that their experiences might not match yours or those of your patient. Madison's Foundation was set up by a family whose child suffers from a rare condition. They have compiled a database called M-Power Rare Pediatric Disease Database, which contains 522 diseases. Each record contains general information about the condition together with further web links and other references.
This section will be updated as more resources are identified.
This section will be updated as more resources are identified.
Friday, 2 July 2010
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' 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.
Wednesday, 10 March 2010
Translations of patient information
Patients benefit when they can read documents in addition to using an interpreter to translate. To support the many cultures that live in England, these resources all link to patient information translated into other languages:
SPIRAL (Selected Patient Information Resources in Asian Languages) and contains patient information resources in several Asian languages, including Chinese, Korean, Cambodian, Thai, and Vietnamese. Topics include cancer, HIV, heart disease, infectious diseases, (including Swine Flu), and mental health.
NHS Choices does translate some of its patient information. Languages include Arabic, Urdu, Cantonese, Bengali, Gujarati, Punjabi, Turkish, French, Portuguese, Somali, Spanish, and Polish. The easiest way to find it is to type “translation” into the box where it says “Enter a search term” and click on Search. A page will come up with all the translations available. Click on the one you want, and you will find out about NHS services, and on the right-hand side, there will be external links to relevant patient information.
Local NHS organisations also produce patient information leaflets to suit the language needs of their patients. For example, NHS Tower Hamlets, produce patient information leaflets in Bengali, Polish, and Somali.
HealthTranslations.com is a repository of translated materials specific to health care. The site includes more than 650 translated documents and more than 70 resources for on-English speaking individuals. Languages covered include Arabic, Bosnian, Chinese, French, and Italian, Japanese, Korean, Russian, Spanish, and Vietnamese.
Patient UK has some translations available in the same languages as NHS Choices, but also in Punjabi, Hindi, and Welsh.
NOAH (New York Online Access to Health) has all of its patient information translated into Spanish.
SPIRAL (Selected Patient Information Resources in Asian Languages) and contains patient information resources in several Asian languages, including Chinese, Korean, Cambodian, Thai, and Vietnamese. Topics include cancer, HIV, heart disease, infectious diseases, (including Swine Flu), and mental health.
NHS Choices does translate some of its patient information. Languages include Arabic, Urdu, Cantonese, Bengali, Gujarati, Punjabi, Turkish, French, Portuguese, Somali, Spanish, and Polish. The easiest way to find it is to type “translation” into the box where it says “Enter a search term” and click on Search. A page will come up with all the translations available. Click on the one you want, and you will find out about NHS services, and on the right-hand side, there will be external links to relevant patient information.
Local NHS organisations also produce patient information leaflets to suit the language needs of their patients. For example, NHS Tower Hamlets, produce patient information leaflets in Bengali, Polish, and Somali.
HealthTranslations.com is a repository of translated materials specific to health care. The site includes more than 650 translated documents and more than 70 resources for on-English speaking individuals. Languages covered include Arabic, Bosnian, Chinese, French, and Italian, Japanese, Korean, Russian, Spanish, and Vietnamese.
Patient UK has some translations available in the same languages as NHS Choices, but also in Punjabi, Hindi, and Welsh.
NOAH (New York Online Access to Health) has all of its patient information translated into Spanish.
Monday, 22 February 2010
Clinical trials
With some conditions, the treatment might still be in development. Before it is ready for general release, it needs to be tested on people with the condition. These are called Clinical Trials. They are voluntary. The James Lind Library has been designed to increase general knowledge about tests of treatments. If you are interested in taking part in a clinical trial, the James Lind Library has published guidance here. There is also information about how to find a clinical trial. A good starting point for finding clinical trials is ClinicalTrials.gov, a service of the US National Institutes of Health, which currently has details of more than 80,000 trials with locations in 171 countries. Speak to your doctor or nurse if you want to become involved in a trial.
Wednesday, 3 February 2010
Books
Books are another good source of comprehensive health information. The only drawback is that they can go quickly out-of-date, particularly with new conditions, where improved treatments continue to be discovered. The other thing to remember is the author and publisher of the book. Are they qualified? Do they have conflicting interests, eg drug company sponsorship? When searching for a book, the British Library website is useful for getting the bibliographic details, which you can take to your local public library or bookshop. The Catalogue Records contain details of the books. You can also find and order articles by keeping the Journal Articles option ticked.
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