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April 23, 2010

Genomics News
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» The potency of the human voice

Last night’s lecture by Ipsos Mori Chief Executive Ben Page, on Public Services in Wales: How to Exceed People’s Expectations was a whirlwind of fascinating insights into what people think about their healthcare and life satisfaction, and what influences these opinions.

A key argument that Ben presented was on the importance of aligning your message around the criteria that are valued by your intended audience. He stressed that public opinion does not necessarily reflect the indicators of good performance identified by health professionals. Factors that show a strong correlation with high patient ratings include good communication, being treated with dignity and respect, and being involved in decisions.

As the Chief executive of a company that owes its success in part to the effective use of new technologies in capturing opinions, I was interested to hear Ben say that despite the growth of social network sites, Twitter, email etc., the human voice remains the most potent form of communication. Thinking of the success and power of Telling Stories, I can understand how this could be.

The lecture was part of the ‘New Thinking in Health and Social Care: Director’s Seminar Series’ being run by the Welsh Institute for Health and Social Care within the Faculty of Health, Sport and Science.

March 23, 2010

Genomics News
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» New omega-3 preparation - clinical trial for inherited bowel cancer

A new preparation of an omega-3 polyunsaturated fatty acid found naturally in fish, offers hope for thousands of patients at risk of developing an inherited form of bowel cancer, a new study shows.

A team of investigators, led by Professor Mark Hull from the University of Leeds, studied patients diagnosed with a rare inherited condition called FAP (familial adenomatous polyposis), thought to be responsible for about one in every 100 bowel cancers. FAP causes a large number of polyps to form in the lining of the large bowel. Patients usually undergo bowel surgery but remain at risk of developing polyps and cancer in any remaining bowel so that regular endoscopic (camera test) checks are required.

In a small randomised, placebo-controlled trial (involving 55 individuals), scientists observed a significant reduction in the size and number of pre-cancerous growths, known as polyps, during a six month trial of the omega-3 preparation.

Now Professor Hull and his team say that further research is needed to find out if this new agent, EPA (eicosapentaenoic acid) could help prevent the non-hereditary form of bowel cancer, which is the third most common cancer in the UK, diagnosed in around 37,000 people each year.

Press Release

For further information on what it’s like to live with FAP go to our Telling Stories website and read/listen to the real-life accounts from Diane, Paul and Lorraine

February 27, 2010

Genomics News
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» New web address for ‘Telling Stories, Understanding Real Life Genetics’ in 2010!

2010 brings in changes and updates to our Telling Stories, Understanding Real Life Genetics website. From today (Monday 18th January 2010) our new web address will be www.tellingstories.nhs.uk

The Telling Stories website continues to be hosted by the NHS National Genetics Education and Development Centre and if you have already bookmarked our website, the original web address will still work (redirecting you to our new homepage).

To find out more about all the latest Telling Stories news and new features including our new stories, new ‘Frequently Asked Questions’ guide, new expert commentaries and new online questionnaire, visit our website and read our latest bulletin and please remember to add Telling Stories to your favourites for 2010!

June 19, 2008

Genomics News
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» Celebrating the first year of Telling Stories

One year has passed since the launch of our education resource Telling Stories. We couldn’t let the fact go un-noticed (and we’re always looking for an excuse to eat cake!) so colleagues from along the corridor joined us this morning for a quick cheer. It’s been an exciting few years since the project began and we’re delighted to have secured further funding to expand the resource into medical education.

Website – 1 today

May 1, 2008

Genomics News
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» Website now No.1 on Google search

It’s just been pointed out to us that our website Telling Stories, Understanding Real Life Genetics is now the first result if you Google the whole of the web with the words telling and stories. Not bad considering how common the words are and you don’t even have to narrow the search by using the ‘G’ word. OK so we don’t have world domination yet in terms of the other search engines but we’re getting there…..(and we haven’t even be rigging the results by searching the site ourselves!)

February 29, 2008

Genomics News
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» Today is the First European Rare Disease Day

For more information on Rare Disease Day visit http://www.rarediseaseday.org/

Why not use this event as an opportunity to learn or teach about a rare disease through the words of our storytellers. Visit Telling Stories, Understanding Real Life Genetics and select ‘Genetic Condition’ from the Quick Themes drop down list on the right hand side and click on a condition that you’ve not encountered before.

For more information on rare diseases visit Orphanet. This is a free database for patients, professionals, support groups, industry and the public. It is dedicated to providing information on rare diseases and orphan drugs with the aim to improve management and treatment of genetic, auto-immune or infectious rare diseases, rare cancers, or not yet classified rare diseases. As part of the contribution to the awareness campaign, Orphanet is re-launching its website next month.