A collection of useful patient information sources

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

• NHS Choices - patient information leaflets
• Patient.co.uk - patient information leaflets
• The Information Standard - accredited patient information
• Behind The Headlines - health in the news
• HealthTalkOnline - personal experiences
• TRIP Database - access to research and guidelines
• NHS Shared Decision-Making - decision aids
• Information Prescriptions - health information
• Discern - tool for evaluating the quality of sites

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

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.

Shared decision making

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:

• The Picker Institute
• Patient Information Forum
• The Information Standard

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.

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.

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.

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.

Patient information sources

In addition to NHS Choices, there are other information sources available to patients:

Clinical Knowledge Summaries provide Information for Patients, written for a UK audience. You can browse by title, subject, or publisher. The information has been researched and written by experts, so it is reliable and relevant to the UK audience.

Henry Ford Health System provides an online Health Encyclopaedia, which contains more than 11,000 pages about diseases, symptoms, medical tests, injuries, and other common health and medical questions. This site has been developed for an American audience, and therefore the descriptions and terminology for some procedures and treatments will differ.

EQUIP (Electronic Quality Information for the Public) is an NHS gateway to quality health and social care information for the West Midlands public. There are links to information resources in almost 100 languages and a directory of more than 4,000 national and local support groups and services.

NOAH (New York Online Access to Health) aims to provide access to high-quality, full-text consumer health information in English and Spanish that is accurate, timely, relevant, and unbiased. You can browse by health topic or via an A-Z index. Again, as this site has been created for a non-UK audience, please be aware that not everything will apply to you.

The Health on the Net Foundation has developed a set of criteria with which its member sites must comply. Therefore, when you search this site, only sites containing good quality health information will be identified.

Patient UK contains comprehensive health information as provided by GPs and nurses to patients during consultations. There are patient information leaflets, information about medicines and drugs, videos, audio, stories, translated patient information, details of more than 1,800 patient support groups and information for carers.

CAPHIS (consumer and patient health information section) provides a top 100 list of health websites you can trust. It is an American resource, so the sites tend to be American, but it is useful as it only includes resources that meet the quality criteria for currency, credibility, content and audience.

Types of information

If you haven’t found the information you need or you want to read the original research, then this post will introduce you to some more in-depth sources.

There are different types of information; in medicine, these are described as levels of evidence, which refers to the level of quality and reliability of the information. Information comes in the form of patient information leaflets, published research, evidence-based summaries, patient experience, advice from friends and family, and personal experience.

The next few posts will look at each level, and provide links to resources for each of these areas.