Tweets and posts can hold hospitals and doctors to account, and can also educate, support or misinform, as Danny Buckland discovers
The internet’s role in medicine was until recently characterised as the “Dr Google” source of patients arriving at GP surgeries clutching print-outs detailing miracle and mystical cures.
The business of explaining why a certain root vegetable remedy was useless or a medical procedure was unproven ate into valuable consultation time and had many despairing that the digital age was contributing more muddle than clarity.
But social media has developed sinews that are making it a compelling force in health, and giving patients a greater say in how services and treatments are delivered.
The gathering pace of social media is obvious. Facebook soared from one million to one billion users between 2004 and 2012, while internet access became available to four out of five people in the UK. The Apple Store started in 2008 and sold its twenty-fifth billion app in 2012. It reached the fiftieth billion sale at the end of May this year.
Public pressure drives up standards and marginalises poor performers in every field, and the health sector is no different
The impact on culture and commerce has been immense, and the internet growth factor has transformed patients into mobile and effective influencers when once they were isolated lone voices.
They now have the mechanics to rate health goods, services and experts in the same way that consumer goods and traders’ reputations are judged. Public pressure drives up standards and marginalises poor performers in every field, and the health sector is no different.
They share information across blogs, forums and twitter accounts, and can demand the best in terms of care pathways and access to the latest technical innovations and treatments.
The providers are switching on too. Dr Mark Newbold, chief executive of the Heart of England NHS Foundation Trust, is an enthusiastic advocate of Twitter to spread health information.
“For me it is about driving openness and transparency in NHS leadership,” he says. “I have many difficult and sensitive decisions to make, and I try to make them based on what is best for the patient. I have no other agenda, so why not share my thinking and encourage debate?”
Individual disease conditions now have dedicated forums that respond instantly to subtle changes in healthcare rather than saving them up for a monthly newsletter.
The not-for-profit Patient Opinion, a confidential feedback forum on hospital and NHS staff performance, has 55,255 patient Trip Advisor-style experience stories logged and is now required reading for health trusts wanting to improve their delivery and get a better public rating to underpin funding.
PatientsLikeMe, a website established in the United States in 2006, has grown to more than one million members with discussion groups covering a range of conditions where members provide anything from emotional support to forensic analysis of drug efficacy and clinician expertise.
But the digital age comes with a note of caution as the control and quality of information is unregulated which can lead to misunderstanding. Observers are also concerned that, despite the wildfire spread of the internet, many people do not have the experience to make the most of the information on offer.
“Social media is a vast set of rapidly developing tools. As with any tools, it is the way you choose to use them that counts,” says Jules Acton, director of engagement at National Voices, the coalition of more than 150 health and social care charities and groups in England. “Some forward-looking chief executives are having dialogue with patients online and charities, such as Epilepsy Action, use Facebook where patients can share views. However, it is important to understand that not everyone has access to social media so we must also be wary of excluding people from the conversation.”
There is some way to go. The Department of Health has some 74,862 Twitter followers; footballer Wayne Rooney has 6,468,573 and counting.
Social media is redrawing the health landscape and opening up sweeping vistas of opportunity for innovation, patient engagement and collaboration.
The overall impact on health care over the next decade is unclear but, as pharmaceutical companies, clinicians and health policy-makers are beginning to realise, the question is not so much how we use social media, but how we ever coped without it.