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Using Social Media to Improve Patient Care
- 1. Using Social Media to improve pa tie n t
- 2. @ B ro o m O w l # A C D C 2 0 1 6
- 4. WHO are the online community?
- 5. T h r e e
- 6. What Why How is social media? do patients use it? can it improve care?
- 7. Whatis s o c i a l m e d i a ?
- 8. W e b s ite s a n d a p p lic a tio n s th a t e n a b le u s e rs to c re a te a n d s h a re c o n te n t o r to p a rtic ip a te in s o c ia l” “
- 9. C o m p u te r- m e d ia te d to o ls th a t a llo w p e o p le to c re a te , s h a re o r e x c h a n g e in fo rm a tio n , c a re e r in te re s ts , id e a s a n d ” “
- 10. zzzz……
- 11. S O … what is it really?
- 16. 33m 10m 1b+
- 17. Social media explained I a m e a tin g a # d o n u t I lik e d o n u ts W a tc h m e e a tin g a d o n u t Here’s a vintage photo of my donut M y s k ills in c lu d e d o n u t e a tin g
- 18. Is th a t
- 19. G a r m in S tra v a
- 20. W o rd p re s s B lo g g e r
- 21. M y F itn e s s P a l P a tie n ts L ik e M e
- 23. 57%84% 18% 10% 40% 13% 9%13% WHATdo you use?
- 24. Communities
- 25. Why do people u s e it?
- 31. I fin d it g re a t fo r k e e p in g m e m o tiv a te d to c o n tin u e try in g to d o b e tte r a t m a n a g in g m y d ia b e te s . …seeing p e o p le liv in g n o rm a l liv e s a n d d e a lin g w ith it [d ia b e te s ], in s p ire s m e a n d te a c h e s m e I c a n b e lik e th e m C o m m u n ity o f s u p p o rt, fe e d b a c k , a d v ic e a n d 'h iv e m in d ' is in v a lu a b le , a n d c o n fid e n c e b o o s tin g
- 33. So how does Social Media improve pa tie n t
- 34. I d o n 't fe e l a lo n e - it m a k e s m e re a lis e th a t I'm n o t th e o n ly o n e in th is p o s itio n . G iv e s c o n firm a tio n y o u a re d o in g th e rig h t th in g a n d th a t e v e ry o n e s tru g g le s a t tim e s B e in g a b le to u n d e rs ta n d & k n o w w h a t m y T 1 d a u g h te r is g o in g th ro u g h & k n o w in g w e a re n o t th e o n ly o n e s g o in g th ro u g h th e s a m e T h e k n o w le d g e th a t s o m e o n e is a ro u n d 2 4 /7 , th a t I c a n a lw a y s re a c h o u t to p e o p le w h o g e t it
- 35. We don’t KNOW if it doe s (at least empirically…)
- 36. DO you feel more confident?
- 37. DOES it improve your outcomes?
- 42. What is social media? Why do patients use it? How can it improve care?
- 43. @ B ro o m O w l @ n in ja b e tic 1
Editor's Notes
- Good afternoon! Thanks everyone for choosing this session this afternoon – hopefully you’ll come away with some points to consider about how social media can be used to improve patient care. I’m going to introduce myself, talk for about 30 minutes about social media and then get you to think about your views and experiences before taking questions at the end.
- My name’s Andy, I’m 34 and I’m from Sheffield. I’m really pleased to have been asked to come here today to speak to you all. I was diagnosed with Type 1 Diabetes when I was 21. I was actually self-diagnosed as I’d read some symptoms of diabetes in a magazine article and went to see my GP to have it confirmed. I’ll talk a little more about my own story throughout the day. Getting diabetes at that age, being away from home and under a lot of pressure wasn’t easy and was definitely a huge shock. Coming to terms with diabetes is an incredibly steep learning curve. But it’s also a journey full of ups and downs and is a constant education. Over the last few years, I’ve become a lot more comfortable talking about my experiences with diabetes and that’s helped me a lot. It’s also given me the opportunity to help others manage their condition and make them more confident in dealing with their diabetes. I also write a monthly blog for Diabetes UK which deals with my own personal experience of diabetes. I’m also very active on conventional social media sites such as Twitter, talking about and campaigning for diabetes care. I’m also the chair of my local Diabetes UK voluntary group in Sheffield, and have been for a little over two years now. I manage the group’s website, write the monthly email newsletter and run the group’s Twitter and Facebook pages, allowing us to connect with our local community and provide support to those people that need it. You’re going to hear about how people with diabetes, and healthcare professionals, can use social media to improve patient care…
- But first, I’ll tell you a bit about me and my story. As I said, I was diagnosed when I was 21 (in 2002) at the start of my graduate year at university. I’d read a magazine article that happened to list some symptoms of Type 1 diabetes that were similar to what I was experiencing. I went to see my GP who was a bit sceptical but thankfully gave me a blood test. The next day I got a call telling me I had to go straight to the diabetes centre at York hospital because I had Type 1 diabetes. I didn’t really understand at the time how serious that was, or what it meant. I just knew that it meant needles. And I hate needles. <<CLICK>> As you know, coming to terms with a diagnosis of Type 1 is incredibly overwhelming – there’s so much to learn and take in and understand. Then trying to apply that in a practical way on a daily basis is tiring and complicated. I was lucky to have the support of my close friends, but to say I was terrified was an understatement. <<CLICK>> I did OK at first. My HbA1c results improved for a couple of years but after that things got difficult. I’d been on a half day course to talk about carb counting but as I was taking mixed insulin at the time, it didn’t mean a great deal to me (I switched to a basal/bolus regime after about 3 years). I wasn’t armed with the right information to manage my diabetes and so I lost interest in it. I’d feel constantly demoralised by high readings on my tester which I didn’t know how to correct, and ended up only testing when I felt like I was having a hypo. I’d come up with more and more elaborate excuses when I had clinic appointments for why my HbA1c wasn’t improving and I’d happily take the sympathy of my diabetes team over having a difficult conversation about how I felt. <<CLICK>> I’d been unable to exercise for a while and put on a lot of weight as a result. It’s fair to sat I had a pretty rough time with diabetes over the first few years. I’ll pick up this story a little later on.
- But I’m not just here to talk about me. I’m here to talk about the wider Diabetes Online Community too. In preparation for this workshop, I ran a survey among people who use social media for their diabetes and those survey questions and their answers will pop up throughout this session The first question was to understand how people would best represent themselves within the online community. The survey was promoted across Twitter and Facebook (as you might expect). And if you’re a game show fan, you’ll be pleased to know you’ll be finding out what happened when we asked 100 people “Which of these best represents who you are?” Our survey said… <<CLICK>> I’m an adult (18+) with type 1 diabetes 68.00% <<CLICK>> –I'm a parent of a child with diabetes 28.00% <<CLICK>> –I care for someone with diabetes 2.00% <<CLICK>> –I'm an adult (18+) with type 2 diabetes 1.00% <<CLICK>> –I'm an adult (18+) with another type of diabetes 1.00% This shouldn’t really be too much of a surprise. We know that whilst the vast majority of people with diabetes have Type 2 diabetes, we also know that most people active and online discussing diabetes as patients have Type 1.
- So that’s a little bit about me (and us!) and today I’m going to cover three things
- <<CLICK>> Firstly, what is social media. It’s a phrase that’s become commonplace over the last few years, but what does it really mean, and what do we mean when we talk about diabetes and social media? <<CLICK>> Secondly, I want to talk about why people with diabetes use social media and look at what benefits there are (along with some of the pitfalls too) <<CLICK>> And finally I want to look at how using social media can improve care and how it might be used to improve outcomes for people with diabetes.
- OK, so onto the first of those things – what is social media?
- Well it could be this from the Oxford dictionary…
- Or everyone’s go to for information, Wikipedia… <<CLICK>>
- No – I think that’s all a bit too dry and boring for us. The dictionary definitions might use a lot of complicated words to try and explain what social media is. But much like with diabetes, there’s a whole world of difference between a clinical description and the actual day to day experience.
- There’s actually two aspects to consider when we think about how PWD use online tools to help them manage their diabetes. Social media really refers to the things we post online (text, links, pictures, videos etc) and social networking refers to how we use these digital tools to help us build relationships with people online. Healthcare professionals may have concerns about using social media and being able to maintain appropriate doctor/patient boundaries, or ensuring they can express personal or professional views safely. We’ll touch more on this towards the end of the session. So what is social media really? How can we define what social media is based on actual experience, rather than a dry definition?
- Well social media can be lots of things. It can be scary. Opening up on social media to talk to a lot of people you don’t know can be intimidating – especially when you think there’s pre-existing cliques that you can’t be part of. It can be difficult to just start talking or sharing details when you’re not sure if anyone is listening.
- It can be confusing. Often there’s a lot of preconceptions about having to have prior knowledge or expertise before you can really start using social media. You might think there’s a lot of confusing terms or symbols that don’t necessarily make any sense.
- But, it can also be fun. Whilst you can use social media to encourage serious debate and share experiences, you can also have a lot of fun by participating in some of the more banal or trending issues of the day.
- And finally,… It can be informative Thankfully once you get over the idea that it’s scary (and realise that it’s not so bad), and you get used to it (and realise it’s not as confusing as you thought), it does become fun. It’s also an invaluable source of information, a fantastic way to meet new people and a great way to communicate with your peers. And as we’ll see later on it can be one of the most powerful tools available to people with diabetes.
- Let’s look at some practical examples of social media. When I said “social media” you probably thought of one or more of these. They are the 3 most popular social media sites, Twitter, Facebook and YouTube in the UK. How popular? Well in 2015, around 33m adults in the UK had a Facebook account and it is by far and away the most popular site for adults using social networking in this country. Around a quarter of UK internet users are on Twitter, meaning around 10m people in this country use the site. YouTube stats are a little harder to nail down specifically for the UK, but over a billion people worldwide (or a third of global internet users) use YouTube in one way or another, either uploading their own content or viewing videos. I’d wager that most, if not all of us here have used one or more of these sites at some point, either personally or professionally.
- There are differences between the various SoMe sites and this is an easy to relate to example of some of their main features. <<Run slide animation here>> Whilst you may not use all of these, or even be familiar with some, their use and vernacular has become part of popular culture (e.g. Likes, hashtags etc) The key point is that the type of social network that is right for you or for someone with diabetes, very much depends on what you (or they) are interested in doing, seeing, reading, watching and sharing. Building a professional network to keep up to date with colleagues in your line of work may mean something like LinkedIn is more appropriate for you. If you want to stay in touch with family and friends, you might prefer Facebook. We’ll see later on why motivations behind choosing to use social media can affect what we use, and how we use it.
- So is that what we’re really talking about when we discuss social media? Facebook, Twitter and YouTube? It’s probably what the overwhelming majority of people would say if they were asked to name a social media site, and the stats I just mentioned go a long way to backing that up. But there’s so much more to social media that many people either don’t consider, or don’t know about. I’ll talk briefly about a few other examples now to try and give a sense of the breadth of what the term “social media” can mean.
- There are thousands and thousands of apps out there, many of which allow people to network as part of their core functionality, so it shouldn’t really be surprising that there are so many other ways to use social media to our advantage. <<CLICK>> Garmin Connect and Strava are fitness apps that allow users to synchronise exercise activities and share them with friends. They include competitive elements to encourage you to try and beat goals and offer a wealth of information from any associated workout devices. Here’s an example of one of the features I use <<CLICK>>. When running, you can create your own segments of a route and share them publicly. The app then creates a leader-board that shows you where you rank in comparison to others. It gives you added motivation to improve, and you also message friends through the app. There’s also a weekly leader-board showing who’s travelled the furthest or done the most steps. There’s also evidence that people who connect with friends via fitness tracking tools tend to be more active.
- Blogger and Wordpress (both blogging sites) are some of the most commonly used tools (by both companies and individuals) for getting a message out onto the internet. Stats from 2014 (which are the most current ones I can find) indicate that around 19% of all websites use Wordpress, and about half of those (so almost 1 website in 10) is done using the free service that amateur bloggers would use. Blogger is another free blogging platform where people can set up a site and begin publishing within minutes. <<CLICK>> Blogs are a great way to tell stories over time and have comment features to allow users to interact with their audience. They also have features to allow you to connect them directly to other sites such as Facebook if you wish. People writing their own blogs to tell a story typically publish something around once a week. You often see they contain photos as well. Some (such as the one I write for Diabetes UK) are published on a monthly basis and are often based on one off experiences, rather than part of an ongoing story. Many people write blogs about their experiences with diabetes, attracting comments from others who can relate to the content of those posts. You often find that medical companies also write blogs showing how their product can help you manage diabetes more effectively, giving every day tips as well as product specific information. These can be helpful for people using particular technology for their diabetes. I write on my own blog, as well as writing a regular post for Diabetes UK (and here’s an example of that blog). One thing to remember is that blogs are just people’s experiences and generally don’t offer specific medical advice (for obvious reasons).
- MyFitnessPal is a free app that allows you to track your daily calorie consumption and exercise to help you lose, maintain or gain weight, depending on your specific goals. It includes discussion forums and guest blogs as well as status updates in the same way Facebook allows. MyFitnessPal will also post a regular status for you based on your weight loss/gain targets You can also link it to other fitness apps like Garmin or Fitbit to easily build a consolidated view of all your food and fitness. It might be one of the most popular and well known health and wellbeing apps out there. MFP is often recommended to people with diabetes as it has useful information about carbohydrate values for different foods. It’s database contains over a million items of food and drink and adding food to your online diary can be done by scanning barcodes. Again, caution has to be exercised as lots of the information is uploaded by users and so may need to be corroborated. <<CLICK>> Here’s one example of part of my diary page. You can see it gives information on calories, carbs fats and protein consumed against a daily target, as well as incorporating exercise too. Finally, PatientsLikeMe is a health website that allows users to learn from others with similar conditions, share experiences and connect to those in similar situations, and to track your health over time. It has almost 400,000 members, looking at over 2,500 conditions and has more than 31 million health data points. It acts as a repository for individual’s health data and allows you to search for people with the same condition and taking the same medication as you. This can lead to conversations about managing specifics of a conversation and hopefully give people more confidence.
- So what social media do I use… <<CLICK>> I predominantly use Twitter for talking about diabetes and most of the people I interact with directly about diabetes are Twitter users. I also use Facebook on occasion and I’m a group Admin for one of the largest UK diabetes groups on Facebook with over 400 members. I also administer the Sheffield DUK Twitter, Facebook and Instagram accounts and use them to promote our group meetings and market our events. Online support also offers people a vital avenue for support. I also use my Garmin app to monitor my exercise and fitness alongside MyFitnessPal which I use to record my food diary, track my weight and get support, tips and recipes. And as I’ve mentioned previously, I blog both personally and for Diabetes UK and so those blogging sites are vital for me too.
- So returning to our survey of the online community… The second question asked people what social media sites they used to interact with other PWD, HCPs etc and this is what they said… <<CLICK>> As you can see, those more popular sites like Facebook and Twitter outperform the others significantly. That shouldn’t be too much of a surprise as we saw earlier that those are two of the most popular sites in the UK. It’s equally unsurprising that so many people read/write blogs as they’re often personal diabetes experiences that people relate to. What is good is that many other social media platforms get a look in too. Almost 1 in 5 use YouTube, perhaps looking at things like Diabetes UK’s Type 1 Uncut videos for those 18-30 year olds with Type 1. Looking at company/charity blogs through to Patients Like Me, these platforms that we don’t necessarily think of straight away are used by around 1 in 10 and definitely shouldn’t be ignored.
- Ultimately, social media is really all about communities. People with common interests will gravitate together <<CLICK>> so whether you’re interested in music, <<CLICK>> sports or even the finer points of magic and spells <<CLICK>>, there’s an online community out there for you. (The Magic Café.com is a forum for people interested in magic). People using social media for diabetes, generally refer to themselves as the DOC, or Diabetes Online Community. That sense of belonging and sharing experiences is hugely important, and leads us nicely onto the second part of this workshop…
- Why do people use Social Media (and specifically why do they use it for diabetes management)?
- One of the main and most obvious reasons is access. Access to social media in this country is ubiquitous. The advent of smartphones, tablets and laptops means that almost everyone can be connected to a social media site or application whenever and wherever they want. Social media is a 24/7 service with a wealth of information and peer support that no other organisation can match You can choose when to be involved, what to be involved with, and how long you want to be involved. You can lead, participate, or observe and still get something from it.
- Social media allows for the democratisation of information in a way that’s probably never been seen before. <<CLICK>> Previously, PWD could only really get information from their HCP, were given information by the news or could do their own research via books/journals in a library. Before the advent of this digital age, it was a lot more difficult to meet other people with diabetes, and possibly a lot more intimidating as it would be largely face to face meetings only. Social Media (and the digital revolution) has removed the barriers to information for anyone connected to the internet. Whilst it’s right to perhaps be cautious of Dr Google, it’s also never been easier to find out some information, or share your experiences with people on the other side of the world. That offers PWD access to a whole new way of managing their condition and getting the help and the support that’s needed when managing a long term condition by yourself. There is an important issue that SoMe has to be self regulating. When you’re confronted with a whole world of peer experiences, you have to understand the quality of information you’re getting in a way that you don’t when you’re speaking to your trusted diabetes team. Social media can be dominated by larger personalities that may or may not always be speaking correctly. It’s important that people learn to understand the communities before blindly following advice.
- Social media is also different world to a clinical setting. Whilst PWD trust their care team, they don’t always have the confidence to ask questions – particularly if they feel it’s perhaps something they’re expected to already know the answer to, or is embarrassing or personal in nature. There’s also the timing of appointments which can often be 6 monthly and patients may not feel able to save questions until they next see their team, or may have forgotten by the time they do. They may also feel under pressure to make sure their appointment keeps to time. <<CLICK>> When you use social media, you’re asking peers so you know answer is based on others experiences and there’s usually less of a feeling that you’re expected to know everything. PWD don’t always need clinical support, which can be scary for HCPs to understand and accept, but sometimes, what people need is just that reassurance that they’re not the only person who’s going through something. PWD can use Social Media to get answers or information without damaging a public perception of themselves. As an example, I sometimes have questions I think I should probably know the answers to, but as I have a relationship with my team as a patient, but also as the chair of our local diabetes group, I don’t always want to let on I don’t know something they might expect me to. Social media gives me a great way to fill in the gaps sometimes. SoMe also gives you a degree of anonymity (if you choose it) so it can give people more confidence to speak openly and honestly without fear of being identified…
- And just to give a really simple, but incredibly helpful example of how social media can be a wonderful thing for diabetes, I’ve got a screenshot of a very brief conversation I had just before Christmas…. I was away with my family and for such a special occasion, we’d ordered a Chinese takeaway. I normally use the Carbs n Cals app to check the carb values for foods like this as I don’t eat them that frequently. Unfortunately, I had very little reception/wifi and the app was giving me an error. <<CLICK>> I tweeted asking if anyone could help me out and give me the carb value and got this message within a few minutes! <<CLICK>> complete with screenshot evidence! Interestingly, I also got this message <<CLICK>>which, whilst being very well meaning and helpful, didn’t sit right with me – as that would have meant a 30u dose of insulin for dinner which wasn’t what I was expecting. It’s a good example, of how ensuring we question information from social media before acting on it.
- SoMe is also a huge gateway into learning and participating in more things and gives people the opportunity to become influenced by those around them (virtually). SoMe gives people opportunities to become part of something bigger if that’s what they want. I started blogging for Diabetes UK a little over 3 years ago as a result of seeing one of their tweets. <<CLICK>> My involvement with DUK has given me a whole host of other opportunities, including being a current member of the charity’s Council of People Living With Diabetes. I was also fortunate to attend a Royal Garden Party in May last year, as well as attending the parliamentary launch of Diabetes UK’s education campaign in November. I’m also lucky enough to be speaking here today due to some of the friendships I’ve made within the DOC. Laura (who was initially asked to run this workshop) was unavailable and kindly recommended me which is how I’ve come to be here today. As a result of those friendships, I’m also now speaking at a Diabetes UK conference in March too. As we’ve seen already, social media allows people to be as active and involved as they like, finding out information where and when it suits them, and getting involved in other opportunities if that’s what they want to do.
- I think one final reason why people may use social media for diabetes management might be one that they’re not necessarily conscious of. Motivational speaker Jim Rohn once said that we’re the average of the 5 people we spend the most time with. The idea being that surrounding yourself with people looking to meet specific goals will also motivate you to meet similar targets. In fact, an experiment comparing a cyclist making laps of a track on his own and then as part of a team of five, showed that everyone within the team performed better than the individual did when on his own. Interestingly, some of the verbatim comments at the end of the online survey I did showed this too, as you can see here. <<CLICK>> Putting yourself in a position where you interact with people who want to improve helps you do the same and that’s a premise a lot of other communities/networks are based on (e.g. WW, AA??)
- So I’d like to go back to my story for a few minutes at this point. If you remember where we left off, I’d got to a stage where I’d stopped testing regularly because I didn’t understand how to really affect the results I was seeing and I’d put on quite a bit of weight. This continued for about 18 months before at one consultant meeting, I was effectively ‘shocked’ out of my behaviour. I remember my consultant taking a graph out of his drawer and explaining that if I continued on my current path, my kidney function would deteriorate significantly over the next 5-10 years and I’d be in serious trouble. <<CLICK>> After that I was given more information about testing and corrective insulin doses and things started to look a little better. About 5 years ago, I moved house and my diabetes care moved to Sheffield Teaching Hospitals. I was give a chance to basically build a new relationship with a new team and review my care from the basics. I think that was a really important step for me and it made a huge difference. <<CLICK>> I ended up with the chance to take part in a clinical trial looking at insulin pump therapy and diabetes education and jumped at the chance. Not because of the potential offer of a pump, but more because I thought that finally accepting a place on a DAFNE course might make a difference. I wasn’t wrong. I got to meet and talk to other people with diabetes for the first time in the 11 years since I’d been diagnosed and it really opened my eyes to the fact that other people were going through the same things as me. After the course finished, I was desperate to further that experience somehow, and that’s when I started using Twitter to find other people with diabetes…. I’ll finish that story off before the end of the session…
- OK – so the final point of today’s workshop. How does using social media improve patient care?
- Well - anecdotal evidence is strong and is again overwhelmingly represented in the verbatim comments from the survey I ran. (as you can see here) <<CLICK>>. And honestly, I’d say close to 90% of comments were like this. I thought when I was given this workshop title, it should have just been a case of finding research that backs this up and presenting that evidence to you all today. In actual fact, the preparation for this workshop couldn’t have been further from that. There is some research looking at the impact of social media on care – particularly for people with long term conditions like diabetes. But that’s largely limited to bespoke platforms and doesn’t really consider people in their real world environment. Ideally there’d be a study that allows for a mix of social media interactions and platforms, but controlling this could be very difficult. I was recently asked for feedback on a draft research proposal that is hoping to accomplish a lot of this. Different thought/speech bubbles around how we think it might contribute to… “I’m not the only one” “I shared my experience” “Someone there 24/7” But actually…
- And this is the frustrating part. Anecdotal evidence is available by the lorryload, but empirical evidence is a lot harder to come by. As I’ve said, there are some studies looking at how people with long term conditions (including diabetes) can improve their care outcomes by using social media, but few of those have published results and fewer still that look at patients using a wide variety of platforms for their own benefit in their own way and in their own time at their own pace. But what about the social media poll I ran? Is there anything in there that may show how people with diabetes feel social media affects their care?
- Asking the same 100 people that we’ve referenced throughout, the question was a simple one… Do you think that using social media makes you more confident in managing your diabetes, or the diabetes of someone you care for. Actually, this is a surprisingly important question. Whilst we’ve discussed that there’s not a lot of definitive empirical evidence directly linking use of social media with improved care outcomes. But what we do know is that there’s a lot of evidence that shows that greater self confidence or self efficacy is positively correlated with improved health behaviours and clinical outcomes. . For example, one study found that support on social media platforms lead to enhanced weight loss maintenance; another found that social support lead to better coping skills with long-term physical pain – both of which can be useful for managing diabetes. So what did our 100 respondents say? <<CLICK>> As we can see, 3 out of every 4 people said they believed that social media made them more confident in managing diabetes. That’s a really positive thing – particularly if we’re persuaded by the correlation between self confidence and improved clinical outcomes. Naturally, you’re probably curious about what that does mean for our respondents…
- Luckily, Our next question was “Do you think that you or those you care for have better health outcomes (eg lower HbA1c, fewer hypos/hypers, better weight control, better day to day BG management etc) as a result of using social media?” <<CLICK>> Interestingly, here the answers weren’t as clear cut as we’ve just seen. A slender majority (53 vs 47) believed that using social media meant that they had better health outcomes. But that doesn’t mean there aren’t improved clinical outcomes of course – it just means that not everyone necessarily perceives that there are improved outcomes. What I’d ideally like to do is a study that monitors key health outcomes and compares the results between those with improved self efficacy and those without.
- The final question about how people feel SoMe affects their diabetes is about finding out information. Remember we discussed earlier that whilst you can probably get an answer to your question, you need to understand the community and the advice you’re getting. Remember this idea of self regulation on social media is important. We talked right at the start about how SoMe is informative. And why wouldn’t it be. 24/7 online access to information and support from all over the world. That’s a pretty appealing thing to be able to do. So we asked “Do you feel confident in being able to find out answers relating to specific diabetes self management questions on social media?” <<CLICK>> Overwhelmingly people do feel confident being able to find out information and that’s also important. It’s one thing being connected to the world, but it’s another to know that you’re connected in a way that gives you confidence – especially when you’re dealing with your own health.
- So where does all this leave us? In a pretty good place I think. (Apologies but it ended up being difficult to recreate a Lego version of this) Social media gives patients the chance to be more involved in their own health care and as we know, patients being more empowered to be part of their healthcare (and are active as opposed to passive) will experience better outcomes… (As an aside, we also know that those people who are more active in using SoMe will tend to benefit more from it. Our survey indicated that 39% of people would class themselves as active, 33% as passive users and 28% would put themselves somewhere in between). The NHS faces a massive financial challenge and moving patients from being passive recipients of healthcare to advocates for their own health may help reduce that financial burden. SoMe is one way of helping patients become more active and that may be one way of helping patients improve their outcomes. I’m going to wrap up my story, and then wrap up this session.
- If you remember, I’d finally met other people living with diabetes and it’d really changed my view of how isolated I felt in coping on a day to day basis and I’d sought out more people with diabetes on Twitter as a result. <<CLICK>> Being more involved really helped me as it was a great way for me to connect with other people and reinforce that new found knowledge that actually, everyone struggled sometimes and that it was OK to not always know the answers. I found out things I never knew and I’ve made some great friendships, virtual and real-life as a result. <<CLICK>> I also used SoMe for my Diabetes UK work and that’s helped me meet even more people with diabetes as a result. Being able to pass on my experiences to those newly diagnosed was comforting and empowering, both for me and them. <<CLICK>> My HbA1c has been relatively stable at around 54 (or about 7.1) for the last few years now and I’ve never felt more confident in dealing with my condition that I have in the last 3-4 years.
- OK so lets try and wrap this up a little bit. These were the three learning points for the workshop and hopefully you’ve got a sense of what social media is, why people with diabetes (like me) use it, and how it can be used to improve care (and outcomes). So what are our conclusions? Well I think there’s a few. Firstly, that patients will seek out more information where it helps them manage a condition like diabetes. Dealing with diabetes 24/7 is no easy feat as we all know, and we can alleviate some of that stress and isolation by finding others who live with it like we do. Secondly, whilst it can offer us a way to interact in new ways, we need to be cautious about how we do that and learn to understand and trust the communities we choose to be a part of. We should understand that whilst it might not be something that is empirically validated, we know that PWD really value the benefits that they get from SoMe and that there’s some compelling evidence that suggests that improved confidence and increased active behaviour in our own healthcare, can lead to better outcomes for us as patients. Alongside that, we know that social media can give people improved self efficacy which can only be a good thing. Finally, we shouldn’t discount the view of the healthcare professionals in all of this. It can be hard to feel like a virtual community is a huge part of a person’s healthcare support system, but there’s no reason that HCPs can’t also be part of that community if you want to. There are many ways HCPs can use social media and also maintain appropriate boundaries between patients whilst also learning first hand what diabetes is like outside of a clinical setting. There is, for example, a Social Media Highway Code that HCPs can use to guide them when taking steps into the world of Social media. The NMC and GMC have their own social media codes of conduct too that support healthcare professionals in taking those first steps online. There’s also individuals like Neil Black (a diabetes physician in Derry) using twitter to interact with people with diabetes, as well as groups like Hillingdon CYPD using Facebook to communicate with PWD.
- I’m happy to take questions now, but if you want to follow up on anything after the session or would like to see the survey data I collected as part of the workshop, you can follow me on Twitter @BroomOwl, or email me on that email address. Hopefully this workshop has offered you some insight into how people with diabetes use social media and how it can be beneficial to their care. <<CLICK>> If not, please do remember that I stepped in for Laura who wasn’t able to attend today, and you can find her on Twitter @ninjabetic1 and direct your complaints to her. Thanks