Would you trust a stranger with your life?
11 Sep 2015
The internet can really help relieve the burden on the NHS, writes Luís Carrasqueiro, CEO of healthtalk.org.
The British public are increasingly using the internet to find health information online and by doing so are feeling better informed, prepared and able to make better use of their appointments with health professionals according to our guest blogger, Luís Carrasqueiro, CEO of health charity healthtalk.org.
"Dr Google I Presume?"
Figures released by the Office for National Statistics earlier last month suggest that almost half of the UK population now use the internet to search for health information, a figure that has more than doubled in the past 7 years, but what impact does this information have on people's wellbeing?
As an online health information charity, healthtalk.org provides detailed health information on a range of health-related issues, alongside video clips from interviews with patients who have experienced the health condition first-hand. As a charity it is important to us to know if, and how, we are helping people. While we do get a lot of emails from grateful users of the site, we wanted the numbers to go with the story, so we surveyed hundreds of our website visitors to find out how the information on healthtalk.org helped them both practically and emotionally.
Pragmatic Things Matter
On a basic level people feel better informed by what they read on the website – 81% of visitors to be precise - while 83% said that they found information on the website that they hadn't found elsewhere. This was the case for Alan Grafen from Oxford whose wife Elizabeth was diagnosed with Motor Neurone disease after noticing a slight speech impediment. Alan and Elizabeth watched a video clip of Mike and Gill from the Motor neurone disease section on healthtalk.org. Mike had lost the ability to speak and used a small, hand-held white board to communicate. ""The white boards were a small pragmatic thing that made really a lot of difference." Alan told us "No one else mentioned them... the idea came from healthtalk.org... Elizabeth was still communicating on the day she died."
People's Real Experiences
The reason we are able to provide information of this depth is because almost all of the information on the website comes from other people's real experiences. There are some things about living with a health condition that you can only really learn from other people who have been in the same situation and who have looked for these kinds of solutions to particular problems out of necessity. The emotional side is valuable too, for example, how do you explain to a child that their mother or father has cancer?
Credible Stories Matter
While believing in the importance of people's stories, we are a step removed from being a forum, a model that is so popular – and often useful – on the web. To ensure that the information provided is trustworthy, we work with a research team at the University of Oxford. For each issue covered on the website a researcher travels around the country with a video camera, interviewing 30-50 people in their own homes. The team at the Health Experiences Research Group at the University of Oxford's Nuffield Department of Primary Care Health Sciences are behind the content on healthtalk.org. They work with a team of experts to guide the research and use rigorous qualitative research methods to ensure that the full and balanced range of experiences is captured and shown on the website, not just the more sensational stories or hearsay you might find elsewhere online. Medical facts and statistics are used to give context to the stories.
Asking Informed Questions
One of our charitable aims is to support health professionals and our videos clips are used a lot in teaching health professionals. However, we help doctors in another way too; the results of our also suggest that healthtalk.org can reduce the burden on the health service. Three quarters of people answering the survey said that they'd found answers to questions they would otherwise have asked their doctors while 81% felt better prepared for their next appointment.
Fran was about to undergo surgery for ductal carcinoma in situ (DCIS), an early type of breast cancer found in the milk ducts. She found the healthtalk.org DCIS section very helpful in preparing her to meet with her surgeon. "It is the best information I found on any website. The Dr's talks were extremely helpful and re-assuring, as well as various ladies' comments on how they felt." she said in an email to us "Forewarned is forearmed and Knowledge is Power. I can now go to my Surgeon's appointment not feeling helpless and stupid and just having to 'put up with'. Now I can ask "proper" questions and get the right answers for me."
Stories like Fran's, and the feedback gleaned from the survey, imply that doctors' time will be better used, or that less of their time is required, by those people who've used healthtalk.org. Furthermore, 30% said that they felt their need for an appointment with their doctor was actually reduced after looking at healthtalk.org. We get more than 5 million visitors a year on healthtalk.org so we think that websites like ours can really help relieve the burden on the NHS.
Improving Family Support
As well as helping doctors and patients, more than 20% of people who come to the website do so in order to better understand something that a friend or relative is going through. The 'young people, depression and low mood' section of the website helped 20 year old Maisy's family to understand her depression when she couldn't explain it herself. She told us: "I have been struggling with depression since I can remember, and have struggled even more with trying to get those around me to understand how I feel. I would try to explain it to them and they still wouldn't get it, making me feel more alone. I sent my parents the link to this page and had them watch the videos, and now they (and I) know that I am not alone with my illness and the way it makes me feel. Now instead of shaming me for the way my depression makes me live, they understand that it can be crippling and have decided to help me. This information saved my life."
You Are Not Alone
Like 71% of respondents to the survey, you will notice Maisy said that hearing others' stories helped her to realise that she is not alone in what she is going through. Anecdotally, this is the feedback that the charity receives most frequently. Elsie has referred back to the site on a regular basis since her mother was run over and killed. She uses the 'Bereavement due to traumatic death' section which shares the experiences of people who have lost a loved one in traumatic circumstances such as a road traffic accident, fire, murder or terrorist attack. She said "I took 'comfort' - though this is not the right word - in the fact that I wasn't alone with my terrible experiences of the police and now coroner and at many stages over the last months I would come back to this site and recommend it to others.Healthtalk.org provided me with so much support - indeed, the only support that was available at that time and the best I've come across to date. It remains an invaluable site for me, on so many levels and it helps me feel less alone more than anything or anyone else can."
In Partnership Digitally
So now we have plenty of data that suggests that the information we provide on healthtalk.org really is of benefit to the millions who use it. We are delighted to be working with Life Insurer Legal & General to raise awareness of www.healthtalk.org. Both organisations share a desire for as many people as possible to benefit from the excellent information and experiences that are shared on the website.
Read more at healthtalk.org