Getting information into the hands of patients Knut Schroeder, GP & Director, Expert Self Care Ltd Victoria Butler, Helpline & Information Coordinator

Apps Fact Sheets Books Student Health 10 Minor Ailments – Self Care Forum Books Diagnosing Your Health Symptoms For Dummies For more information visit www.expertselfcare.com or email knut.schroeder@expertselfcare.com

The importance of accessible good quality information Without information, informed decisions simply cannot be made.

Pathway to care can be confusing.... This ‘simple’ diagram begins to look at the number of people that may be involved in the RA patient’s ‘world’. Some people might remember the series of advertisements that ran not too long ago as a recruitment advert for the NHS when they list the number of people involved in helping an accident patient back to recovery. Now consider this in the wider setting and for a degenerative long term disease like RA.

www.nras.org.uk

Share the NRAS experience Our background What we currently do What we’d like to do in the future

NRAS – A one stop shop of information! Helpline Website Publications Workshops Groups Training/ Self Management programmes Peer to Peer Social media

0800 298 7650 helpline@nras.org.uk The NRAS Helpline Helpline calls and emails Researching information for individuals or generally Facilitating Peer to Peer support calls Updating information Monitoring the Health-Unlocked forum

How people are reaching us... Web search naturally is the biggest way people access our information

Peer to Peer Support is changing the game – patients are learning about good practice from each other Over 450,000 visits to our website in 2012 HU – 247,033 visits in 2012, grew from 9,000 in Jan to 22,000 in December, from 117 countries Now have 2,272 members in the HU NRAS community Thousands on Facebook, Twitter, Youtube NRAS

What works for one won’t suit another there has to be a variety of ways to help people self manage their condition. Patients need tailored information that suits their current situation.

NRAS Publications Wide range of issues that face people at different stages. The Information Standard is a certification scheme for health and social care information, which was set up by the Department of Health.   Successful organisations can use the quality mark on materials (and website) to confirm that their information is  reliable and follows a good quality process of information production.  NRAS joined the scheme in 2011 and we had our 2nd annual review in March, which we passed. All new information products now have a process to go through in-line with the Information Standard. There is still a long way to go to get our historic products through The way we produce our information booklets is by firstly listening and involving our members by hosting focus groups and ensuring the language, context, style etc. meets the needs of the end user.

NRAS want to put patients in the driving seat Putting patients in the driving seat so they get the answers they need and feel a part of their treatment and care. Ensuring they are fully informed in the way they need and understand is vital.

New Ideas we are considering Apps – exercise; patient diary reminders; monitoring etc. Podcasts Webinars

Clear goals Who are your target audiences, and what are their needs and wants? What about the competition? What are they doing?

Issues you raised?