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Teens with Autism Lack Healthcare Transition Services | Science ...

Teens with Autism Lack Healthcare Transition Services | Science ... | Epilepsy Young People | Scoop.it
This science news story describes disparities between healthcare transition services available for young adults with autism and those with other special healthcare needs. ...
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Janys Venne's curator insight, November 12, 2013 12:39 AM

I'll appreciate your time & help to visit my website on seizures epilepsy at http://seizures.dolyan.com/. Thank you :)

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Meryl Streep in First Do No Harm

Faced with near impossible conditions to have her epileptic son released from the hospital, Lori Reimuller (Meryl Streep) decides to sneak him out. (@StreepForum #Epilepsyinfilms.
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How epilepsy may harm children's learning - Medical News Today

How epilepsy may harm children's learning - Medical News Today | Epilepsy Young People | Scoop.it
How epilepsy may harm children's learning
Medical News Today
According to the UK Charity 'Young Epilepsy' more than one in five people with epilepsy have learning or intellectual difficulties.
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Children with health conditions need new rules to protect them at school

Children with health conditions need new rules to protect them at school | Epilepsy Young People | Scoop.it
Children with medical conditions are being put in danger at school because of inadequate guidelines, campaigners say (Do children with asthma and epilepsy need new rules to protect them at school?
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How is Social Media Revolutionising Healthcare?

How is Social Media Revolutionising Healthcare? | Epilepsy Young People | Scoop.it

Ten to fifteen years ago, most Internet users experienced a one-way relationship with the sites they visited; the information required would be extracted with little interaction or exchange between user and provider. The introduction of social media, however, revolutionised the way we communicate by facilitating quick and easy distribution of text, images and videos between friends.

 

In a field such as healthcare, at once highly complex, constantly evolving and relevant to our day-to-day lives, an effective means of communication is vital.  It’s no wonder then that our first point of call for information on medical issues has extended beyond friends and practitioners in our immediate vicinity to large online communities. The more images and information uploaded to the web, the easier self diagnosis becomes through the comparison and identification of symptoms.

 

According to a KPMG report, out of a survey of 3,001 US adults, 80% used the Internet to access information relating to health. The use of social media for health issues, however, is far from restricted to peer-to-peer experience sharing, as an increasing number of patients receive individual services from trained physicians through social-networks or other service providers such as Skype. But could social media relations ever provide the same standard of care and attention as face-to-face visits?

 

Benefits for Patients

Connecting with others with in similar positions – patients diagnosed with unusual conditions can now reach out to the people across the world who can best relate to their situation, offering advice and support in a way which was previously unheard of. Several charities such as Ben’s Friends for rare diseases and Unique for chromosome disorders have been established in order to connect sufferers and let them know they are not alone. A more general network is PatientsLikeMe, where users can share information on doctors and treatments. According to a 2011 survey conducted by the site for those with epilepsy, 55% reported ‘better understanding of seizures and improved adherence to treatment’ as key results of using the site. 

 

Helping with diagnoses – local GPs might easily fail to spot the symptoms for a rare disorder they have not encountered before. The people most familiar with a particular set of symptoms are, of course, those who already suffer from the condition. Last year, a baby was identified as suffering from a rare condition called trigonocephaly after a random stranger saw the baby’s photo on Facebook. The stranger had a son with the same condition, which, if left untreated, could result in brain damage or even death. Each doctor that examined the baby before this time had failed to reach a diagnosis.
 Greater anonymity – for those suffering from an embarrassing illness or one with a degree of stigma attached, such as HIV, herpes or other STIs, speaking anonymously could be easier than with a personal connection. Online communities might also encourage users to seek treatment rather than suffer in silence.

 

Reduced cost and more convenience – some medical problems may be dealt with through online communication if the patient presents no physical symptoms. This is particularly applicable to mental health or follow-up patients where a relationship has already been established between patient and doctor. Virtual conversation saves both parties time and money, and may improve the quality of care due to the increased availability of healthcare professionals. Advice on the best type of care – sites such as Amazon and Tripadvisor have demonstrated the power of reviews. Apart from shopping and travel, an increasing number of reviews posted relate to healthcare services, including treatment types, practices and medical practitioners as individuals. Although not wholly reliable, online customer reviews and comments can have a dramatic impact on the decisions made in the healthcare industry by providing details from first hand experience. Studies also show that in some cases, reviews of healthcare institutions have a direct correlation with actual patient outcomes. 

Benefits for Healthcare Professionals

Connecting healthcare professionals – social media provides a useful support group for doctors to share news, ideas and experience and keep updated with the latest technologies. Healthcare networks provides opportunities to broaden practitioners knowledge and expertise, as well as material which will help doctors make informed decisions about referrals to specialists or seek advice to correctly diagnose patients.

 

Healthcare institutions – more and more hospitals are connecting with their patients through social media. Hospitals may post updates on services, changes in administration, healthy living campaigns, news articles about advances in healthcare or information about charitable donations. It is hoped this approach will help build stronger relationships between healthcare providers and patients. The National Health Service – NHS Choices provides a wealth of clear and concise information on a wide range of heath conditions and how to access NHS services. The service has garnered 55,000 Facebook ‘likes’ and almost 100,000 Twitter followers, allowing the NHS to disseminate information quickly and efficiently as well as receive useful feedback. This months quit smoking campaign, Stoptober, has also gained significant exposure thanks to social media activity, with 19,000 Twitter followers. 

 

Data collection – social media updates have been used to track cholera or influenza in attempts to analyse how outbreaks spread and predict where they will travel to next. There is seemingly no end to the potential for social media to improve the data we have on medical conditions. The KPMG report on social media in healthcare states ‘as more users start sharing their healthcare experiences online, social media websites and the internet are expected to emerge as an important resource for making critical healthcare decisions.’
  Emergency situations – victims and rescue teams following natural disasters very quickly recognised the advantages of sharing information on social media. To give just one recent example, after a 7.0 earthquake hit the Ya’an region of Sichuan Province, influential microbloggers harnessed the power of China’s extensive social media network to direct rescue operations to where they were most needed. Google China implemented a people search engine to connect missing friends and relatives as quickly as possible and users were also warned to avoid main roads to allow better access for rescue vehicles.
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Lola Howle's curator insight, October 17, 2013 5:43 PM

"According to a KPMG report, out of a survey of 3,001 US adults, 80% used the Internet to access information relating to health." AND to check out the authority/reputation of their doctors

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Study aims to capture autism's transition into adulthood ... - SFARI.org

Study aims to capture autism's transition into adulthood ... - SFARI.org | Epilepsy Young People | Scoop.it
By identifying the medical practices that are associated with successful transitions — and collecting the teenagers' own opinions about their care — the study may also serve as a jumping-off point for researchers who want to delve more deeply into...
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Scottish Parliament debates New Learning Disabilities Strategy - DeHavilland (press release) (subscription)

Scottish Parliament debates New Learning Disabilities Strategy DeHavilland (press release) (subscription) To assist us with that, I intend to develop a health improvement, efficiency and governance, access and treatment target to capture the...
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