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.