Data from social media: Where is the value?
Given my data background, I made a few comments. Companies have developed 'social listening' platforms, and often the premise is an organisation such as a pharma company can understand what's being said by patients in real-time about their medicine, particularly relating to potential issues with the medicine, such as adverse events. However, when I speak with pharma, they tell me, knowing 'problems' from social media isn't enough, they want the other side of the coin. What benefits are patients experiencing from the medicine? Now, is social media giving you the full picture, or are you hearing more about the risks, and less about the benefits?
Whilst finding out what patients are saying on social media could potentially be useful, the true value will only be realised when it's linked to the patient's medical history. A marriage of 'hard' and 'soft' data in healthcare. Finding the signal among the noise.
Trust and Engagement
Part of the discussion was also about engagement and trust. I recall my own example, I had an issue with a rental car a few months ago. I tweeted about the issue to the car rental company. To my surprise, they followed me within minutes on Twitter, and sent me a direct message asking for my phone number. I did that, and spent 30 minutes with a member of their customer service team, who LISTENED to my issue, and did his best to resolve it there and then. It turns out he and his colleagues spend all day monitoring what is said about their rental car company on social media, and they respond accordingly.
Now, look at healthcare, imagine you're a HIV or mental health patient, and you receive less than optimal care. Would you really post a tweet to the NHS with details of the problem? Online communities where conversations can be shared privately may provide a way of capturing that information, but even then, how can a patient really be sure their personal data is secure? Healthcare providers work hard to protect privacy of both the patient and the healthcare professional, which allows trust to be a cornerstone of the relationship. As more doctors and patients get social media accounts, what are the risks that this hard earned trust can be broken? All it takes is one public tweet to damage someone's reputation.
I remember the unforunate events with the Boston bombing earlier this year. Concerned citizens took to social media, utilising Twitter and Reddit to try to help the police find the suspects. One night, citizens believed they identified a suspect, a student who had vanished a few weeks back, and shared this on social media. For a brief period of time, the misinformation that spread so rapidly on social media branded this student as one of the bombers. Reddit had to apologise to the family of the student for what happened. Naturally, I can understand the caution that many in the healthcare profession have towards embracing social media.
I also just read today about an airline in the UK, which allegedly tried to prevent a passenger boarding their plane, because he publicly tweeted something negative about their customer service. Now, imagine in healthcare, you express your dissatisfaction using social media about your experience in healthcare? Could it potentially impact who wants to treat you?
Pulse of the patients: A true representation?
Many will argue that social media allows us to understand the 'pulse' of patients in real-time. Yes, that's true to some extent. However, what about the 7 million people (15%) in the UK that have never used the internet? Many of which are poor, disabled or elderly.
The biggest users of healthcare, are typically not the 20 somethings running around creating apps in East London or Palo Alto. They are the elderly. The biggest challenge the NHS faces is chronic disease management. Who are living with multiple comorbidities and taking multiple medications every day? Again, older patients. How many of them are online? How many of them can afford an iPhone with a data plan? How many of them WANT to share via social media, given that did not grow up in the digital economy?
80% of UK care homes have no access to the internet. Does social media capture what the residents of these care homes are saying about their care? Nope. The National Audit Office has warned the UK government that it's fixation with digital by default agenda could leave people behind. Will this trend mean that the 'Digital Divide' becomes a 'Digital Gulf'?
I believe we need to generate evidence of what works and what doesn't work in social media, so we have the chance to make informed choices. I've observed far too many decision makers adopting new technologies simply because it's this year's buzzword. Every organisation, large or small has a finite budget. Maybe in your organisation, the money you would spend on setting up a social media department might be better spent on hiring two extra nurses?
A recent study at UCLA, recruited 112 men from Los Angeles who have sex with other men, and examined if social media and online communities could increase HIV testing and lead to behaviour change. The results seemed to suggest so. However, the two biggest groups in the study population were 60% African-American and 28% Latino. I'm curious. If that study were replicated in rural North Carolina or rural Yorkshire, would the results be the same?
In life, one of the methods for obtaining and retaining power is to not share information with others. Social media promotes sharing, collaboration and transparency. That's bound to make those in healthcare who currently wield power quite nervous.
Overall, it was a fascinating discussion, with a series of excellent questions. We ran out of time, but the questions being posed by the audience made me feel like we need to have a healthy, sincere and open debate about the role of social media in both healthcare AND social care.
Are we moving towards a world where one day every doctor, every hospital, every patient will have a social media presence? Will we no longer need people to work in customer service departments, because patient feedback is received and acted on in real-time using social networks? Will the openness and transparency promised by social media prevail over those who would rather keep information locked away in a filing cabinet?