• How can doctors use social media (Facebook, Twitter, email, etc.) to provide better care for cancer patients ?

    Asked by saltermd on Tuesday, March 27, 2012

    How can doctors use social media (Facebook, Twitter, email, etc.) to provide better care for cancer patients ?

    I'm looking for any ideas or examples of how doctors, clinicians, and other professionals can use social media to engage and interact with cancer patients. There are plenty of sites that try to communicate with patients - I'm curious to hear from patients as to what is really meaningful for you. Does your doctor use social media ? Do you use email to communicate with your physicians ? Do you follow your doctor on Twitter ? I'd love to hear about it !

    13 Answers from the Community

    13 answers
    • GregP_WN's Avatar
      GregP_WN

      By simply being available to answer some of the hundreds of questions that are posted on sites like this one. People are scared, afraid to ask their dr. questions, or don't understand the answer. Sometimes the Dr.s are in such a rush they don't explain what is going to happen, how, and what to expect. I know time is money, but sometimes I feel like I should have an ear tag in my ear as I'm running through the chutes.
      By simply looking at the volume of questions on this site, it is apparent the information is lacking at the point of treatment.
      Thanks for being here.

      almost 5 years ago
    • GregP_WN's Avatar
      GregP_WN

      Where I go now, Vanderbilt Medical Center in Nashville, they do have a system online, you can ask your dr. a question, about anything concerning you, set up an appointment, view your records and test results, a pretty good system, but I prefer to be sitting in front of the Doc and get it face to face. I don't let them leave the room until I'm happy. One of my favorite responses over the years is "yeah, that sort of thing will happen". I think that's the generic answer.

      almost 5 years ago
    • derbygirl's Avatar
      derbygirl

      I agree with both answers. My Oncologist does not have an answering service. After hours her calls go straight to her cell phone, she doesn't have an answering service. My Cardiologist encourages patients to email him at least once a month to let him know how they are. He is also on facebook and has patients as fb friends. Once a month he hosts a Q&A for patients to ask questions. I was a clinical assistant in an ObGyn office and noticed that patients would ask me questions but when it came to asking the doctor they either were too afraid or simply forgot. When you at home in a relaxed atmosphere it is easier to ask questions through email or Q&A. Also my local hospital Lancaster General has a website for patients to join community groups, get test results, and get updated information on medical advancements. Bottom line-Keep the lines of communication open!

      almost 5 years ago
    • nancyjac's Avatar
      nancyjac

      I am of two minds on this. On the one hand it would be great for a patient to be able to get whatever answer they are looking for any time day or night. On the other hand, cancer is very personal and I sure wouldn't want to use facebook or twitter to talk to my doctor (and the rest of the world). I think there are 3 general areas of dr/patient communications.

      1. General information: There is already an overwhelming amount of information available in this area from books to clinical trials to websites.

      2. Patient specific/medical general information: This would be something along the lines of an individual patient asking a question specific to him/her of a general medical person they have never met. Could be somewhat useful, but on the other hand as a patient, I wouldn't rely solely on an answer from some one who does not know my complete medical history. From the medical persons perspective, I would think every answer would still have to be followed with a "but check with your own doctor". If I were a doctor, I wouldn't want to put my butt on the line giving medical advice on the internet to those that are not my patients. I also don't think I would want MY doctor spending the time she should be devoting to HER patients on generic social media responses.

      3. Patient specific/medical specific information: This refers to communications between patients and the medical personnel that are treating them. I think the most important thing to remember here is that communication is a two way street. Patients and medical personnel both need to be able to communicate effectively and efficiently. Just as doctors prepare for appointments with their patients, patients need to prepare for their appointments with their doctors. Before every medical appointment I go to, I make a checklist of what I want to discuss. I ask for a copy of all medical reports. I've never had a problem with getting answers or anything else I need. This may be because I try to be concise, direct, and respectful of other's time. I try to stay on point and discuss those things which require direct communication between me and my doctor and don't discuss those things that I know I can get the information for elsewhere. Doing these things minimizes my need to communicate with medical personnel between appointments, but on the very few occasions this has been needed, I haven't had any problems either. My oncologist works in a practice with 2 other oncologists, and one of them is always on call. Once or twice I have called on the weekends (which was when my side effects kicked in when I was in chemo) and each time the on call onc would call me within 10-15 minutes with an answer or solution to my immediate problem. She also works pretty closely with the surgeon and radiation oncologist to which she has referred me.

      My oncologist's office is in the process of setting up something called "My Care Plus" which is a secure online site where patients call view their medical records, including lab results, other test reports, doctor's notes and orders, etc. It hasn't gone live yet, but I think this will be very useful to me. I view myself and my oncologist as partners with equal responsibility for communication and coordination of every aspect of my care.

      So I guess in answer to your question, my bottom line is no, I don't follow my doctor on social media and have no interest in doing so. Social media is for socializing, although these days it seems to be equally a marketing tool, and as such I think it is trivialization of patient/doctor communication. If I had to rely on social media, even in part, to communicate with my doctor, I would find a different doctor. The impression I get from doctors who "advertise" on line is that they are cruising for business or simply have inflated egos more interested in promoting themselves than helping their patients.

      almost 5 years ago
    • leepenn's Avatar
      leepenn

      These are really interesting responses.

      For general stuff - I like being able to find information about my diagnosis online. I like seeing patient questions answered by docs. However, there's a limited amount of information that can be gained because everyone is so difference and because the doc never has 100% of the information.

      When it comes to details, many are not comfortable having personal information out and available to the public...

      My thought is that EMAIL IS AWESOME!!!! It's pretty darn private - I can go back and look at responses at my leisure. And, files can be attached.

      For example, I tend to comb the scientific literature. When I was talking to my doc about return to pre-menopausal status, we both traded back and forth articles from the scientific literature. It was fantastic. I have several other examples of similar exchanges. Also, the doc can respond to me at his leisure... I put in the subject line enough information that he knows whether I need an answer asap or whether it's more of a no-rush kind of a thing. Both of the lead oncologists caring for me invited me to email, and both of them are very responsive on email.. ..

      I try to think carefully about when I email, and I have probably averaged about 2-3 emails per month over the course of my treatment. Email is a double edged sword... and I didn't want to be that person who emails and emails and emails... I have a student like that - she emails at the drop of a hat, and to be honest, it drives me crazy. So, I decided to be very mindful about the frequency and content of email to my health care providers.

      When my pathology results came back after my double mastectomy... I received an email from the head of the clinical trial - congratulating me on the results (like I did anything to make those happen aside from showing up when instructed and exercising and eating carefully etc...)... and phone calls from two others. One of those calls was totally expected - the surgeon called to tell me the results of the path report. The second call was a surprise.... and a delightful one.

      So, if you are an email kind of a person, my recommendation would be to ask whether your doc can and is willing to communicate by email. But, I would also recommend that you be mindful about how much and what you email...

      As for facebook - NEVER would I want to interact with my doc via my wall or my doc's wall. By personal messages, that would be alright, except that there are some significant concerns regarding who owns what is posted in any bit of facebook.... Thus, facebook for me is ONLY for fun... ONLY for general updates about my health to my friends... ONLY for organizing things that don't have anything to do with personal and private information....

      With twitter - I guess it could be interesting if the doc were linking up recent results in research related to the doc's speciality or a clinical trial or something like that... But I would most likely ignore that, to be honest. I'm not a big fan of twitter. But, that's just me.

      almost 5 years ago
    • nancyjac's Avatar
      nancyjac

      " People are scared, afraid to ask their dr. questions, or don't understand the answer. " --quoted from drummerboy's post above.

      I don't disagree with the statement, but people who are afraid to ask questions need a counselor or life coach or something. I don't think it is reasonable or beneficial to expect an oncologist to read their patient's minds in order to answer the questions they are afraid to ask. This is the patient's responsibility and there is nothing to be gained from blaming or expecting the medical community to fix this shortcoming.

      almost 5 years ago
    • Ivy's Avatar
      Ivy

      Some people want all the information they can find so that they can anticipate what might happen next and be prepared. There is much info on line, but it is rarely specific. For instance, for a particular cancer treatment follow-up, if chemotherapy is generally prescribed, what is the range and/or what is optimal? What are the typical side effects, from lowest expected to most extreme? You can read all the websites of major hospitals and national cancer groups, and you won't learn anything of this nature. If lymph nodes are removed for a particular cancer surgery, how many and which ones? Again, you go into waiting mode to see your doctor and you wonder about it for weeks. Even most of the hospitals that have secure patient access sites have little of benefit actually on the website. I would be grateful to have any extra communication generated by the doctors, pathologists, etc., but I wouldn't want it on Facebook or Twitter. These sites are too social, and frankly, are used more by younger people who are less likely to be diagnosed with cancer. (I have a Facebook account but consider it mostly a waste of time.) An oncologist could keep an email list of patients with similar cancers and do group mailings with research and/or treatment updates, and then also send some more specific, personal email communications occasionally about the individual's treatment. I'm fairly new to all this, and while an excellent web researcher, have not been pleased with the quality of information available to patients. Use email, and perhaps you can set a new standard for communicating. It's sorely needed.

      almost 5 years ago
    • akiko's Avatar
      akiko

      I agree with nancyjac's first reply. Social media is not to good for this purpose and the reasons to support my opinion is exactly the same with nancyjac. Social media is extraordinarily intended for the marketing purpose and cancer patients should find better methods to seek information while protecting the privacy. I remember I was reluctant even to join this American Cancer Society support site because I am afraid of exposing privacy issue. This site is member only and is allowed to be annonimous but once you say somethihg in twitter or facebook, people over the world know who you are and what you are doing. The social media is great if you want to stay in touch with people of want to make money but to get answer regarding cancer question??? I greatly doubt it. People who have not experience cancer may not give you the right or helpful answer.

      almost 5 years ago
    • saltermd's Avatar
      saltermd

      Thanks so far for everyone's input. There has been a push for physicians to adopt/embrace social media and I don't think the current platforms are great for what patients and doctors really need from this type of interaction. Many docs (myself included) have Facebook and Twitter accounts, but we're not really reaching patients the way they need to be reached. Technology can be distracting if it's just "noise"...patients and doctors really need to find ways of utilizing the existing technology to have meaningful interactions beyond the exam room. I agree that privacy issues area a major issue - for that reason I refuse to use any commercial site to discuss a particular patient. I love the email idea for both individual as well as group interactions. As newer media are developed we may eventually find a better way to connect providers and patients that translates into better care.

      Thanks again for your comments !

      almost 5 years ago
    • RuthAnne's Avatar
      RuthAnne

      saltermd,

      Have you ever heard of www.cancergrace.org? It is run by a group of doctors and encourages patient participation. The forum is one that allows patients and doctors to interact. Patients can ask questions and post comments that can be responded to by both doctors and other patients. Dr. West (who started it) just published an article in one of the major oncology journals about the possibility of using this type of forum to help patients who have cancer subtypes (cancer that is driven by gene mutations, for example) to have faster and easier access to clinical trials. The potential is there to get experimental medicines from the lab to the bedside ASAP. This is, I think, a very important need that social media can fill.

      almost 5 years ago
    • nancyjac's Avatar
      nancyjac

      RuthAnne,

      Thank you very much for the info on that site. I have been checking it out this morning and have found some very useful information there, particularly related to IBC.

      I registered, but have not yet gotten the required email to activate the registration. Did it take more than a couple of hours to get that email when you registered?

      almost 5 years ago
    • RuthAnne's Avatar
      RuthAnne

      You're welcome. It did take some time - next day, if I remember correctly. There seem to be problems in that regard. If it takes too long, you might want to see if there's a contact/help email on the site. I'm glad you find it helpful. I do too. :)

      almost 5 years ago
    • RuthAnne's Avatar
      RuthAnne

      Here's the contact email: [email redacted]. Good luck!

      almost 5 years ago

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