Creating patient-physician synergy with social media – Stanford Medicine X 2013

both of you that made me realize that something very real and tangible was happening through social media these physicians were sharing their knowledge sharing information but a pract and upstream of that they were listening and actively engaging with us with us patients and wealthy others ate holders who were on this chat and on others because when and is their introduction we'll tell you about those it was so the reason we're here today is to talk about that aspect of things and I'll let you now : introduce yourselves good morning probably as dr. Becker shooting on Twitter I think there's several contenders right she's still I have practice focuses on working with patients and caregivers that are effective mysterious illness that's the therapy work that I do and I'm just a one-person shop and so back at the beginning when I was still in sticker shock over all of many college grad school people told me to get a website got red blob universal media I was incredibly skeptical of us my name is Deanna type breast surgeon is practiced in burning just oldest half appears on Halloween I am NOT creative in academics general dog he's an academic faculty training I've been impacted 13 years and probably for the last 15 of those that have had website which I thought was adopted sort of my staff out there put my brand out there but you know if I needed to talk to you we call each other or I just didn't see the value to me is visual on Facebook and then you start hearing about all these doctors I am currently executive in earnest IV breast surgeons and I still have sure the Communications Committee and appears to across the board and shared communications committee we were looking at as an organization we were just urges to get involved in special media Asko has the president's a lot of the medical organizations have a president we wanted to be able to reach out to our members or physicians but also the patient's of our members to allow the finest to give them an idea wherever she was so I got to go before the board and discuss why we need to get involved in social media and I couldn't have Twitter account or anything so I develop them and take my practice and like I said basically just started listening because I didn't really know where my voice was or how I can figure out when it's time to buddy I just realized I think I need to end and I'm a three-time breast cancer survivor so I don't I mentioned that in the introduction but I'm you know a patient so that's why this is so interesting to have this conversation well it has started thinking of everything well why don't you start by if you can think of an example of an interaction with a patient who may or may not have been a patient of yours all social media that created an aha moment for you or something like that my first aha moment probably game during the breast and personal immediate at I began engaging on Twitter right about the same time and so you know I had huge overwhelming but it did for me it was because before that and I still can start of the started following I still remember the day when Joey Malaysia followed me back oh my god Stables but my my aha moment was when I'm mourning her end of the day those researchers and came for us to the women for having a common issue of friend of theirs who had been diagnosed with a disease which is an unusual rust condition that area associated with breast cancer and they were talking to each other and one said well my doctor recommended it my friends doctor recommended a staff meeting in Istanbul she had in her eye and they were happy for that I'm watching this one just waiting for the point to the money the other is realizing how after or not any information from your doctors and so I got to do just a breast surgeon connected any suggestions or anything like that boy whose strength was that going to this issue DM to be an event email and I can't go through her polity report into stuff another but if she's been diagnosed with a disease this is the algorithm what soon you look at the code I pulled up a couple of our description members did I know here's the couple people in cheek and go to per second got a male about a month and a half later she had the MRI it was very localized she had a lumpectomy she's doing great thank you so much for me when I can actually reach out to someone and and in my mind this is no different than if I have a colleague or a friend across the country and they call me and said my mother was just diagnosed with breast cancer what should I do I'm doing the same thing that I do every single day not giving specific medical advice but giving guidance and giving support and to then get that feedback was just priceless Deanna can you say a little bit more about that because that's exactly the point so many physicians talk about being afraid or you know being discouraged or not being allowed by their organizations to go on social media and engage with patients because you know of course HIPAA and privacy and the fear of well I can't give medical advice so what use would would I be so say a little bit more about how that what you said about if a colleague were to contact you cuz it's exactly that yeah I mean so there's two things one is I'm very fortunate that I am in solo private practice and while I am speaking for myself and obviously I want to represent my brand well I'm also speaking for the American Society of breast services and I'm also representing VCS em but in terms of I mean again I'm not giving specific I get a lot of DMS and a lot of direct tweets from patients I've been diagnosed with this first thing that I'll usually do is follow them and tell them to follow me back so we can do this in a little private setting and there are some people that I've given my email out to so we can have a little bit more extensive discussion but again it's as physicians we get these calls all the time a neighbor a friend a family member a colleague across the country and additions in a different specialty my so-and-so was just diagnosed with breast cancer what do I need to do because this is outside my area of expertise same exact thing is what we're doing here and I don't think that crosses I don't think that conflicts with HIPAA I don't think it crosses any professional boundaries as physicians we want to share our knowledge we're educators this is what we're trained to do and why not you know there's only so much you can do one-on-one why not be able to disseminate a look that a little bit further right and you know I one of the things that I've heard listening a lot in fact in the opening session you heard Michael Cera say I went to dr. Google you know people are people are there online and I'm always a little frustrated when I hear health professionals whether it's it's mental and medical say you know I don't want my patients to go online and I think come on everyone's going online this is what we do this is how we interact now and so it's not that we want to keep people offline we want to put good information online and part of that is by having genuine people online you know I I'm not a I'm not an organization anything that I write on my blog is is written by me out of my brain you know it's it's not canned it's not produced and you know what my clients love that other mental health folks have access to that you know if people are going to dr. Google let's make sure there's good stuff for them to find yeah let's not try and fight the ocean and why don't you tell us a little bit more about being a mental health professional and using social media and you know there's so much still so much stigma around mental health and so much ignorance tell us a bit more well no actually this is it's a big deal mental health providers are especially wary of online spaces because so much of our work is about confidentiality HIPAA is the tip of the iceberg – what confidentiality is to us you know without that secure privacy we have nothing to work with and so a lot of mental health folks look at looking online and think oh it's not private and and I would say right but you're not doing therapy on Twitter you're doing education on Twitter and education should be public not private and and that's that's the difference and and that's the the switch that I think a lot of mental health providers struggle a little bit with is that when you're interacting online you're wearing your your educator hat that's the time to teach and supervise and do public health education and so that's that's how I reconcile that and I have a social media policy my patients sign it's on the first day they come into my office at the same time as they hand over their insurance information and it very clearly says I am NOT going to follow you on Twitter or LinkedIn or Facebook and while you may follow me that's not private so you should know that at the get-go I can't I don't have any control over you so you get to follow or not follow your call but it's not so you want total confidentiality about your connection with me maybe you shouldn't do that I'm not on social media to get patients exactly anything else to say or shall we open it up to questions no the only other thing is just to expand a little bit on Anne's point is that we're not on this to gain patients we're educators we provide support I feel very strongly that if there's information out there it should be accurate information again to women should not have to be having a conversation about some obscure breast disease in the middle of the night and figuring out between themselves and Google and whatever does she need an MRI or does she need a mastectomy that is a big lack that's a big fault of us the docs that we're not providing that education to our patients I am thankful that they are at least tuning in to an area where they can find some support my feeling is a physician part of my responsibility if I'm going to be on Twitter is to help guide those conversations help steer them in the right direction one of the things I'm very proud of what we've been able to accomplish on V CSM is by setting that example and showing how you can interact with patients as a medical professional we have attracted a whole bunch of breast surgeons medical oncologists we have OBGYNs we have radiation oncologists we basically have all of this Medical Specialties psychology Social Work everything we're kind of showing them how you can interact with patients in a constructive and productive way and and providing a safe place for them to go for good credible medical information and to add to the point about you're not on Twitter to try and get patients I think I can speak for my fellow patients in that we pick that tone right away we you know it's very clear you sniff it out a mile away and if someone is interested in having a genuine interaction and said you know genuine relationship it's possible when you find the people who are on their authentic Lea and who have awareness about what they're doing so it's very constructive we have a question from Emily Bradley as breast cancer or or you're involved with the breast cancer community as a breast surgeon and as a mental health professional I know there's stigma and a lot of misconceptions in both of those fields and I'm sure they overlap and one of the things that I've seen and I'm not a part of that community so I'm not making any assumptions but I've seen poorly in my opinion poorly designed advocacy surrounding about certain body parts instead of the person than the disease and with mental health I'm trying to be um ya know but as mental health professionals who you know you focus on that aspect but then you you know the advocacy coming together how do you fight that stigma online and do you see it a lot in your in your community in your discussions and you know how do you handle that I think I can clearly say that in the community online we certainly talk about the inappropriate marketing of illness and it's handled and discussed and you know we talk about the fact that anyone who is struggling is not a commodity and their pain is not a commodity and we just call that out and I would say there's a very particularly at the be CSM community but you know I hope that in my presence online too there's a zero tolerance for for things that are damaging you know if we see it we call it out and it fades away sometimes oh no I mean one of the things that comes up a lot in the breast cancer community VCS em community especially we're coming up on October so it's Breast Cancer Awareness Month that since when did my disease become an excuse to go shopping you know so we we address those issues we have constructive discussions around those issues but I agree within the community police is itself very well the patient's the advocates that are on VCS em especially those that have been on for a long time are very good at calling out spammers calling out companies that are making inaccurate marketing claims like if we can find that you're at risk for breast cancer we can prevent it well that's not actually true because you all know we don't have true prevention I am very vocal at calling out those companies because I know a lot of them because I work with a lot of them there was one in particular where I had had a conversation a couple weeks earlier with their marketing department they wanted to put some brochures in my office and I said no unless you start taking that language out of your publications and off your website I cannae I believe in your tests I have the kits in my office but I'm not going to put your literature there they started following me on Twitter and then they started saying the same BS on Twitter and I called him out like you know you guys should have known from our conversation a couple weeks ago I'm not shy about this but the community does a really good job and I think that's if you build a really passionate community focused on the right things they will police themselves and and likey and said there's a zero tolerance for for anything like that any more questions from the audience it sounds like both that all of you use Twitter or very much and what I'm still trying to find out is how to make Twitter more accessible for individuals with disabilities the patient population that I represent is young stroke survivors and brain injury and the parts of the using it on handheld device the speed of the stream that while you're thinking of something other things of your followers are coming in do you know of any resource so we're out on Facebook because we can group the conversations a little bit better it's a little bit slower paced and not quite so overwhelming but when you combine slower processing speed visual deficits one-handed typing problems well and I think that is an excellent illustration of the fact that there's multiple tools because not every tool is the best fit for every population I don't they're not okay they're not all on Twitter but maybe you invite them I would say you know if you if you know of some really great patient centered physicians that are specialists and brain injury you invite them you say hey could you check out how some of these other physicians are serving as a community moderator for their disease condition and and you can see you know they're not being taken advantage of give them a call Deana would talk to another physician invite them yeah absolutely you know this doesn't the deal here our entire the the mantra all weekend has been and let's participate you know let's communicate okay that's two ways yes that's two ways you know providers are scared of HIPAA of liability of lawsuits they're scared of those things and incidentally those things can ruin my life so there's a good reason they're scared and you know and they should be as well like we need to be held accountable I'm not for a moment suggesting otherwise but they are scared and so they may need an invitation and some encouragement to show up I think one thing that's a huge takeaway for me from our interactions what I've seen with be CSM and other communities with doctors like both of you and our interactions here at MedX is that we as patients as a patients and this sounds trite but really think about it for a second we are people doctors are people and we must never forget that one of the chats that we had a while back was from the patient side what do you want from your doctor and there were all these things instant access and I want my phone call answered in two minutes and and there were a bunch of his stocks and we were given I think only about five to seven minutes at the end but we basically said when I have that interaction with you in my office it's one-on-one and my job is to make you feel like I have no other patients but the reality is I might have twenty breast cancer patients just like you that all need an hour of my undivided attention and I make a point when my patients are in for the first consultation and we're sitting in my consultation room with the door closed my phone doesn't ring in my office I don't have the ringer on in my office I make a point of when we're done call it any time but just like you saw we were not interrupted for this full hour I will not be interrupted or pulled out of a patient room for your phone call I return my phone calls right before lunch right after lunch sometimes at the end of the day sometimes at the end of the day that's six or seven at night and my interactions with Twitter are the same but I think it's it's letting and and there were a couple of US stocks that sort of started getting that point across and the patience and the group were like oh I forgot I was not the only patient all right that's great we're doing our jobs then but that's something that you know we've tried to get across as well as it we are really trying our best but I'm in solo private practice there's only one of me and I'm the only one that can answer these calls my medical assistant can't if I had a nurse she can't take these calls it's all got to go to me well and let's not assume that doctors aren't patients please because you know doctors also you know have a patient experience and want the same things that you know we've been hearing all weekend that any patients want so this is not it's not a dichotomy Janna to add to that if you just think about from the patient perspective what we go through in our professional lives about do i disclose can i disclose what do I do about that imagine doctors having to go through that dilemma food for thought Alicia a question anyways one of the questions that keeps coming back it just through the stream today is this is great that we're all here like live tweeting and sort of you know making these connections in a virtual social media kind of sense what happens to the percentage of pop you know patients and population that are not engaged in this fashion I'm wondering if you can speak to what you've learned in online communications has it impacted the way you deal with patients offline is that something that you could speak to and just address I would say one of the first things then islet DN a– jumping because she's got thoughts is that i have so many more resources to offer my clients in person now because i follow really smart people on twitter and so i can connect people that I work with individually to things that I didn't know about two years ago or five years ago or six months ago because I hear about it quickly on social media so it makes me a much better clinician because I have more to bring to the table the other thing I'd and I think and shares this as well as is that I know that the patient's get a lot from our participation I mean we've been told that we sense that but what I don't think the patients realize is how much we as clinicians gain from the interaction with patients I think I know I have a very good relationship with the majority of my patients I know that they tell me as their surgeon which usually is the one you least have a relationship with they tell me a lot that they may not bring up to their medical oncologists or their radiation oncologists but what I learned from the chats is how much patients put on their makeup in their best suit and their best behavior to come into the office I know what kind of chemotherapy these women are getting I'm not following them all through their chemo because they're seeing the met on the Met on probably does even know as much as what's really going on but we learn about it from listening to you guys online and it's given me a much bigger appreciation for what my patients really are going through and it's changed my approach to the conversation with them so how are you doing I'm okay no really how are you doing no I'm okay no really what is specifically going on with X Y & Z because there is no way I know what drugs you're getting there's no way you're doing okay that's a level of questioning that I wasn't aware of or you know didn't know enough to probe deeper and that's what one of the things that I get from participating with these kinds of groups sorry Emily when just to add to this there's a reason this panel is about synergy because you're being aware that you're being able to push push gently or fiercely but with the right intention side points that patient gives you know if if I hadn't had a doctor who hadn't been like that I don't know what I would have done because you do feel obligated just by your sense your own sense of dignity and decorum to show up and do what you have to do you know and so thank you for that Emily so historically when you were building B CSF I guess this is kind of a little bit more for the for the patients but was there ever concern that bringing in professionals would change the dynamic of the community or that the community would feel like it was intrusive in a sense absolutely not when I first started seeing doctors join in on the conversation because this is not a conversation no one is you know we aren't giving lectures we're putting questions out there too for the community to answer so when a doctor comes on and says I'm part of your community it's like I could almost cry it's like yes you are part of my community I'm part of your community and this is exactly where I want to go I mean I was just like wow there's two there's three there's four it was the coolest thing that's Jodi shocker the co-founder of be CSM and to add to that as a early adopter participant of be CSM it there was this feeling of it all coming together organically so it attracted the kinds of doctors who wanted to have the kinds of interactions that were absolutely the opposite of intrusive it attracted the kinds of patients who also wanted to have those conversations researchers people from hospital administration all the possible stakeholders you could imagine and you know organically as well people who didn't fit in or people who didn't have that kind of intention it just got diluted Joe do you have a follow up yesterday Deanna said that you know at full functioning we have an interdisciplinary team on that chat and part of the goal is to not only have the patient perspective the radiologist perspective the physical therapist perspective a dietician someone from immunology how are we going to you know improve our immune systems to fight this disease so we want every person that plays on this healthcare team at some point or another to be part of the conversation because it's the only way we go forward bring the mic to Mike hi as you know i'm a huge advocate of everything you do align them what we do but one of the things i found with some of the chats that is a big bugbear of mine is that patients suddenly think they can become doctors as well and for me there is a red line that no patient should ever try and diagnose or treat another patient and I just wondered you're nodding your head but have you had experience of that happening because you know I find it's fine to say look when I was under that Med this is what happened to me but I would never dream of saying up my steroids to 30 milligram and that's a big line for me that patients shouldn't cross yeah I mean there's two things one was you know my the experience that I relayed earlier as far as stumbling across a conversation where these two women are trying to figure it out for themselves but the community in general is also very careful and again it's not only the docs week we will step in someone's talking about their horrendous experience with tamoxifen we make it a point to get across that you know what not everyone has a horrendous experience with tamoxifen and there are very good reasons that we recommend it for extended therapy because it can prolong survival it's not for everyone but we do really try and get patients and it's very difficult to do sometimes but to get patients to separate their specific side-effects or problem from the global issues and I think that's one of the reasons why not every patient is a good advocate because to be a good advocate you actually have to separate yourself a little bit from your disease and understand all of the factors that are going into your treatment but that is something that both the patients and the physicians do police and we try and guide those discussions it's it's a really important point I think out times up unfortunately so thank you all for coming and we'll be we're here we're here and on Twitter you know where to find us I may not get back to you for a while because I can't tweet me or but but I will get back to you

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