We live in a 24/7 society. At the touch of button, we can be immediately catching up with friends and family. All of those friends from back home are but a click away. We can access our bank account online, pay our bills and transfer funds all from the comfort of our own home, in our PJ ’s, with a drink, wearing a bandits mask. We can shop at our convenience for almost any single item anyone could ever imagine (and some). This too requires very little for us to do – a quick PC boot up, internet connection, we are set. We can read late breaking news as it happens, check the weather for the week at home or in Australia, and follow our favorite sports teams, possibly even catching the game live or watching highlights. These things are all possible. AND, this things often don ’t even require a computer. When 91% of the world has a cell phone, the information is often RIGHT IN OUR hands. They are in our pockets vibrating, alerting us to that one important email we have been waiting for all day. Go ahead, don ’t be shy, wave your phones, let’s see em. No shame in punching a few keys during a talk, we are all guilty of this. This is our connected society. We are in the age of constant connectivity. Very few of us are ever able to separate ourselves from our technology. We are connected and in the know. We can access whatever we want, when we want it. That is, until we start talking about healthcare.
So, what is social media? First, social media is a dialogue not a lecture. It allows multiple parties to engage one another in conversation. This extends beyond day to day personal and professional engagement to another level of interaction that may include your personal life as well as your professional life. Because of this, it is often less organized that face to face discussions and guards are often let down. Social media is a tool. It compliments much of what we already do in our relationships. Swapping stories – sharing experiences – all common – used to be only happening in our families or our small communities. We were protected from shame, and no one knew our ailment. Now, we have an electronic community out there which has patients from every walk of life. Some look like you, others don ’t. The point is here you have options to connect to others. We are still protected, but it is as if we don’t need protection as much. Disease are normalized, destigmatized, and openly discussed in safe environments – your own home – or wherever your technology allows you to roam. Take Patients Like Me, a website that connects patients. PatientsLikeMe allows patients who suffer from these life-changing diseases to converse with one another, sharing data on improving their outcomes, empathize and to learn specific techniques or medication other have found helpful. The site was launched in 2005 when two brothers watched their brother diagnosed with ALS need more information and community based services. Healthcare professionals and researchers can access the site, enabling them to find out what treatments its patients have tried and how successful and the outcome of specific treatments. The site has also introduced a number of projects that analyze clinical information given by the patients. Users of the site access the site for free. However the site is a commercial site as it aims to sell its users' data to drug and medical companies. The number of users is increasing. At October 2009, there were 45,000 registered patients on the site.
An e-patient is a patient who has used the internet to be more informed, involved, and engaged with their healthcare. There is an entire movement around e-patients, and much can be found on the e-patient website. A couple of brief points: 1) The Society for Participatory Medicine is a public charity devoted to promoting the concept of participatory medicine by and among patients, caregivers and their medical teams and to promote transparency among patients and their physicians through the exchange of information; As one of the societies first initiatives, they started the e-patients blog, which has stories upon stories of patients and their active involvement within their own healthcare. The underlying theme for much of the epatient effort is the movement of patients from passive recipients to “responsible drivers of their health”. An example of what you might find on the e-patient website can be heard in this brief testimonial :When I arrived at the Mayo Clinic in Rochester, Minnesota a few weeks ago, I was asked: &quot;Who referred you to us?&quot; My answer was not traditional: &quot;Twitter.&quot;
Described as a marathon because it requires time and preparation to accomplish. What about blogs? Who here keeps an online diary or blog? Reads? Many folks keep an online blog and then tweet about what they are writing. A one two combo punch. Blogging can brief or comprehensive. It all depends on your mood, and what you want to tell the world today. Blogs can be academic or not. They can be anything. Take for example Dr. Paul Levy, the president and CEO of Beth Israel Deaconess in Boston. His blog titled, Running a Hospital, gives a day to day blow of whatever is he wants. One of his last post addressed rate setting in Massachusetts. He justifies his decisions, and explains the history that lead to those decisions. There is a level of transparency here that some, namely the Hospital Board , is uncomfortable with.
CAN BE EDITED
I will argue today that part of being patient-centered has to do with how well we as providers and practices are up on our patient-centeredness. How willing are we to listen to info a patient read about online? How willing are we to accept conclusions the patient may have drawn from his or her facebook page? How do we even define patient-centered? A survey by the national research corporation indicated 1 in 5 use social media as a source of healthcare info – 94% have used facebook for info. Only 1/3 say they consider a high or very high level of trust in social media. So, let ’s do Social Media 101 and talk about each technologies application to the patient-centered medical home. First up, Facebook. From the Mayo Clinic to McDonalds, everybody has got one. How many of you have a Facebook page? Facebook is a social media outlet whereby individuals can connect freely to others. It is really quite simple to get started. Facebook will prompt you for certain events in your life – when you graduated high school, from where, college, etc. Businesses, universities, cartoon characters all have Facebook pages. Yes, you too can be their friend. You can learn more about people from their Facebook page often more than just talking to someone one on one. This has raised many a question especially when it comes to the relationship between a healthcare provider and his/her patients. There is a wonderful commentary in NEJM on “practicing medicine in the age of Facebook” I would highly encourage each of you to read this brief article on the pros and cons of “friending “ your patients. We have all heard the stories of the resident who was seen on his/her Facebook things engaging in questionable behavior and this page is viewed by a patient who complains to the practice manager who tells the preceptor who addresses this with the resident. It should be noted that Facebook is a reality we must face. Consider that 44.5% of medical students have a facebook page, and this is as of 2008 so the number is likely significantly higher today. And yes, unprofessional info does appear on the web, but very few policies are in place in medical schools when this happens. Most just caution students of their use of such technology. Does AF Williams, Rose or Swedish have a Facebook page? Many clinics do to keep their patients informed when weather turns sour or clinic hours change. What happens when you want to let everyone know that the latest special vaccination has arrived? You see where I am going with this. Just as there are reasons not to facebook, there are reasons to facebook.
Moving on to Twitter. Twitter is 140 characters. 140 characters. Think what you can say in 140 characters. You either say not much or you learn how to say it really, really efficiently. You follow people and they follow you. You build a network. You get connected to complete strangers who get whatever you get. Being the healthcare policy guy, I have found a tremendous group interested in talking about healthcare policy. To follow everyone who is on twitter talking about health care reform, I would put in a hashtag (really just a pound sign in front of my keyword) and hcr for health care reform. I can follow anyone and everyone who talks about healthcare, share resources, articles, and links. Twitter is a way for anyone and everyone to say whatever is on their mind, whenever it is on their mind. Literally anything and everything, whenever. 50 million tweets are sent a day. Impressive, huh? Tweets in 2009 grew some 1,400%. Traffic to Twitter.com grew around 1,100%, and total sent Tweets went up 1,400%. You can get info out fast, share your latest article, connect to others who have similar interests, and follow trends on specific topics. As a matter of fact, when I was preparing for this talk, I “tweeted” to find resources, articles. When I tweeted the title of my talk, what it was for, and when it was, I was asked if it would be streaming live, if the slides would be available, and how they could learn more about our Department. There are excellent tools out there to manage your twitter account. These applications can go on your iphone, computer, basically anything that does not have a heart beat. Tweetdeck, as you can see, allows you to keep a running stream of who you are following, you mentions you in a “retweet” who sends you a direct message, a personal message to only you that no one else can see, and any specific trends you are following. Now, talk about PCMH. Practice communication could be huge on Twitter! Similar to Facebook, Twitter could report upcoming events, highlight new providers, openings, or discuss general healthy tips or articles on health. Individual providers could build a following on an area of health they are interested. Take Dr. Kevin Po for example. With 21k individuals following him and his blog, Dr. Po gets a ton of medical information out there to the healthcare community. Any provider could do this on their specific medical interests. Patients have tracked down providers based on their twitter feed. This is twitter. This is social medical and networking. If twitter is a sprint, blogging is a marathon.