How Useful are the AMA Guidelines on Social Media and Physicians?

November 28, 2010

A few posts ago, I noted that the AMA had released guidelines regarding how physicians should use social media.  I noted that I would try to find the full guidelines and return to discuss in more detail.  I was surprised when I actually saw a copy of the new guidelines, mainly because the actual policy is not all that much more detailed than the initial summary.  In essence, the guidelines advise physicians to ensure both patients’ and physicians’ own privacy, maintain appropriate doctor-patient relationships and act accordingly to professional standards, to monitor and address on-line information posted by colleagues, and to remember that any information one posts on-line may have an impact on one’s professional career.

A few colleagues have already posted about the guidelines, and they had different perspectives.  Jane Sarasohn-Kahn of the Health Populi blog and Ted Eytan, MD both felt the guidelines were useful.  Health Populi notes the AMA’s late arrival in this area, but welcomes the early steps of promoting and guiding physician engagement with patients via SM.  Dr. Eytan highlights some issues with the guidelines but feels that they will be useful in promoting discussion and dialogue between physicians and patients regarding SM’s role in health care.  On the other hand, the ScienceRoll blog was unimpressed, pointing out how general the guidelines are and the lack of specific recommendations that might have been included.  That post’s author believes that these guidelines are nothing more than publicity on the AMA’s part, and that they do not provide any true value.

The #hcsm Twitter chat participants discussed the guidelines on November 14.  The overall tone of the discussion was one of being generally unimpressed that the guidelines would have any great impact, yet hopeful that the guidelines may help further discussion and debate.  No-one seemed to feel that the guidelines suggested any sort of turning point on SM use in health care.  The only new element introduced in the guidelines is the recommendation that physicians should police each other’s SM postings and take action if inappropriate posts were noted–either by discussing with the posting individual or by reporting the individual to the necessary authorities.  These element created more discussion than some of the others, but even here the guideline is so vague that its actual impact is difficult to assess.

My take on the guidelines are these:

  • First, these guidelines don’t really make much of a difference in my use of SM.  Anyone who has been active in discussing SM use in health care or by health care providers has already seen these proposals and suggestions multiple times.  For anyone active in the #hcsm or the #MDChat Twitter conversations, these guidelines largely repeat ideas already discussed and conclusions already reached by many (most?) of those already using SM to promote health care communications.
  • Second, these guidelines are not practical or concrete enough to provide protection for MDs using SM.  If a patient or a colleague complains about what I post on-line, I would be hard-pressed to point at the the AMA’s guidelines and prove that I have not done anything wrong.  These guidelines do not provide any sort of “safe harbor” criteria, which could provide cover for a physician who had used SM in the “right” way.  This lack of detail or of specific examples means that I cannot be entirely sure that my posts will meet (or fail) the AMA’s test of appropriate use.
  • Third, the idea that physicians should “police” risks alienating physicians from using SM.  If I feel that part of my job is to keep an eye on my colleagues’ posts (and to take action if I feel they have posted something “that appears unprofessional”), I might be less interested in seeking to engage with other docs via SM.  The guideline’s lack of specificity is also worrisome in two specific ways: 1) How does one decide if a post “appears unprofessional”?  This standard is worthless to anyone trying to judge another person’s post.  If I post about my dinner, is that “unprofessional”?  If I criticize the AMA, is that “unprofessional”?  There is no final arbiter on this issue, so in theory any post could “appear unprofessional”.  2) If a physician notices a post that is later judged to appear unprofessional and that physician did not take action, could there be sanctions or other harms as a result?
  • Fourth, I think these guidelines may have a role in beginning the SM discussion at a formal level.  As vague as they are, they present a framework which can then be further developed and fleshed-out by the AMA or by other organizations.  The more engaged we are in the process as physicians, patients, and advocates, the more useful the guidelines may become.

If these guidelines are looked upon as the final word, they are clearly insufficient and could lead physicians to avoid or reduce SM communication even as patients are turning to SM more and more.  If it stops here, the AMA may have harmed the process of physicians exploring and incorporating SM as a valuable way to communicate with patients and peers.  As they currently stand, the guidelines do not advance the idea of SM in health care communications in any way.

However, if the AMA reads posts such as this, speaks with physician members and patients, and revises the guidelines to make them more useful and more valuable (creating guidelines that could be used to establish “safe harbor” use of SM, and clarifying when/how physicians should address other people’s posts), then these guidelines could be seen as a first draft of useful and effective SM guidelines that could benefit physicians and patients alike.


Facing Up to Facing Death: A Chat on PBS’s Frontline Special

November 22, 2010

On Nov.21, 2011, Christian Sinclair, M.D., a.k.a. @ctsinclair on Twitter, hosted a video watching event on Twebevent.com concerning the PBS Frontline program “Facing Death.” The television episode took a deep look at end of life issues in the ICU, filled with real-life vignettes of families facing tough decisions. With over 60 contributors and 466 tweets, the event was a highly successful gathering of interested medical professionals and lay people all interested in delving into the often wrenching decisions at the nadir of life.

The program was divided into topics, which were played for the chatting participants who used the hashtag #facingdeath to comment during and after each of the segments. The chats were very lively and zeroed in on family dynamics, authority relationships, the often shifting perspective of patients and family regarding end of life care and several other matters. I have tried to summarize what the group captured and what each of us gained in participating in the chat. I truly believe the video & chat format represents a wonderful way to explore a crucial health topic in an informed and mature manner. It was the combination of using the video in a social media context that brought the conversation to life.

The Way We Die
In the video, one of the doctors intoned, “Nobody wants to die and nobody wants to die badly.” The #facingdeath chat group immediately got busy, and @ctsinclair stated, while no one wants to die, it is “tough to prognosticate when that is.” Therein lies the challenge.

The majority of the participants of this chat are advocates in some respect of hospice and palliative care, so they became quite critical of the doctor’s claims in this program that “…There is almost always something we can do to put off the inevitable.” The group’s differing opinions are summarized by the comments below:

@renee_berry: “There is almost always something we can do to put off the inevitable” [not always]

@renee_berry: “doing nothing” language #nothelpful …Palliative Care is SOMETHING

doctorfisher: never liked “doing nothing” as a description of palliative care!

Throughout the discussion, it was clear that the participants were respectful and thankful that these families had consented to be filmed for the Frontline program, acknowledging their generosity.

What was most instructive were chat moderator Dr. Sinclair’s informative side bars regarding standard of care.  For example, during the film, a doctor was featured bowing over a patient in bed raising issues of end of life care, prompting Dr. Sinclair to tweet:Talking at the bedside with comatose patient, not sitting down with family. Not necc standard palliative care.” When the doctors corrected their body language and sat down to have eye contact with their patients, he nodded approval: “Much better now the doc is sitting down.”

Likewise, when chat participants inquired if a palliative doctor was the same as critical care doctor, Dr. Sinclair made sure to clarify that they are different, but should overlap for best care.

Every aspect of the patient, family and doctor interplay was exposed, warts and all. In some cases, a clear lack of privacy (HIPAA) loomed: “ctsinclair: ICU’s with open bays. SO tough to have privacy.” Ellen Richter, a nurse participating in the chat echoed this: “Sometimes in a crowded busy ICU theres nowhere to take family to discuss dying & its tough.”

One of the biggest issues to be highlighted was the lack of certainty from family members about what to do regarding end of life care of loved ones.  Dr. Sinclair said it best:

ctsinclair: The family members key phrase “I dont know” Uncertainty is the biggest enemy in ICU decisions

This prompted a flurry of recommendations around the chat room to put into place medical directives upon becoming an adult: “renee_berry: Advance Care Planning should be a standard for quality care, #achievable rather than current state “in a perfect world.” Nurse Richter also underscored this point by noting that the ICU environment is “so sterile,” it isn’t the best environment to broach this emotional topic among family. Others concurred, noting the burden placed upon family to sort things out on their own.

Extending Life...or Prolonging Death
The second clip focused on the conflict between providing all health care measures for extending life at all costs vs. balancing quality of life with limited time left. Dr. Judy Nelson is interviewed in the film, where she admits, “it feels more difficult to stop something that’s already been started.” That implicit momentum was a bit of a revelation, as it revealed the doctor’s feeling of pressure of what Dr. Sinclair termed “clinical inertia.”

This issue was further magnified when one patient was quoted as saying, “I never want to be on life support,” while his family responded, “we’re not ready to stop life support.” During these emotional moments, some of the health care professionals on the chat applauded the efforts of family to emotionally connect with patients (e.g. singing at bedside, touching of hands, etc.). The chat then became instructive on the type of emotional comfort that could be given to provide enhanced care. It was also fascinating that the film allowed viewers to see how families decide these issues (e.g. in one case, where family members voted their opinion).

Adding to the uncertainty of what do is Dr. Mann’s admission in the film that, “People surprise me all the time.” That statement spurred Dr. Sinclair to ask about recall bias. Again, such commentary throughout the discussion forced Twitter chatterers to think more deeply about what was imparted. Getting to the heart of the matter, @doctorfisher commented: “fear of “imposing” sometimes prevents us from giving families our opinion, the very thing families sometimes want from us.” Indeed.

Some of the participants were wondering how the patients selected for this TV special might lend a slanted portrayal of the ICU environment. @DonaldHTaylorJr noted that ,”83% of US deaths to age-eligible Medicare beneficiaries,” yet the first two cameos featured patients who were much younger (~40s to 50s). This might tend to skew one’s perception of typical end of life situations.

There seemed to be almost an aversion to a discussion of palliative and hospice care options. For example, when doctors in the film mentioned stopping treatment, it was rarely followed by saying what is initiated.@doctorfischer spotted this trend right away,”When we ‘stop’ one thing we always ‘start’ another, shifting the focus to aggressive relief of suffering.” Notwithstanding this, the doctors in the film were exceptionally candid and even admitted their biases and how they try to adopt processes to limit their intrusion.

What was clear from the pain of families going through these decisions was best summarized by @LZeefe: “Letting go is the hardest part. Education important for pt/family on quality vs quantity of life.”

The Great Uncertainty
In this vignette, a patient undergoing a bone marrow transplant was featured. This was a good example of a patient undergoing serious treatment, with a good deal of side effects, in the short term with the goal of ultimate recovery. This is known as the Double Effect (see  Wikipedia->http://bit.ly/cjHO8u). But, that is not how things went for this patient, even with an additional transplant. He was enduring quite a physical journey and looked completely exhausted. He was recounting his battle against cancer, baring his soul while seated in the hospital hallway.  Our Twitter chatters noted that and again wondered about his privacy and the respect for his condition.

As the grind of the physical battle this patient waged on, @DONALDHTAYLORJR asked,  “biggest question as I watch is what does informed consent actually mean? Can people consent?” While the effects of the disease were plain to the naked eye, the psychological trauma was not calculable. The patient was still raging against the disease, but at what psychological cost?

The emotional cost on families was brought into focus with the wife of a patient named Albert.  She stated in the film, “Why give up? What’s that gonna do?” While this would have been a perfect opportunity to discuss other options, the film maker never broached the idea. Dr. Sinclair observed, “Tough to make arguments about that without reframing giving up.”

Dr Grosskreutz, another doctor interviewed in the film, was adamant that, “there was always something to do,” leading me to wonder in what situation would she find hospice and/or palliative care appropriate. It was as though the doctor would take death as an affront to her professional credentials. The chat group recognized that, as @DonaldHTaylorJr pointed out,”Palliative care is not ‘doing nothing’ But large cultural education is needed on hospice and palliative care.” That is, the word hospice was said once during the film, and palliative care not at all. It is an option, but there was no champion to raise it to the fore. Rather, there were two patients who were taken home, but no details were disclosed about what care they received at the end of their lives. I suspect this likely raises more anxiety in the general public about end of life matters because it is curtly dismissed.

Talking About End of Life
In this segment, we saw Dr.Osman wanting to clarify a patient’s end of life wishes which appear to have changed. However the body language appeared to give the physician an unfair advantage. Dr. Sinclair noted during the chat, “Doctor is leaning over patient asking about treatment goals. Body language dictates who has power. Sit at eye level.” For #facingdeath chat participants, Dr. Sinclair’s references to the body mechanics involved in communicating with patients conferred a great deal of insight.

Complicating the patient’s plight involved with Dr. Osman was the patient’s girlfriend who was not the medical proxy. It was the patient’s sister who held that role. Dr. Osman conferred with the patient’s girlfriend, stating she thinks the patient was going back and forth, but wants to do what is right. This prompted Dr. Sinclair to rightly inquire, “Is he going back & forth, or are questions being framed so that he wants to do whats “RIGHT?”That level of nuance added through the Twitter chat really allowed participants to critique the dynamics underway at bedside.

The patient stated to Dr. Osman, “I want everything.” Our chat moderator stated, “I want everything [is] the most powerful phrase that is often the not always well informed, born from uncertainty.” Finally, in the midst of this patient’s decline, Dr. Groopman admits that continuing life saving treatment has its drawbacks: “you risk amplifying suffering.” His colleague, Dr. Malone echoes this sentiment as well: “stopping therapy almost means that we acknowledge that death is near.”

One patient in the movie was described as having endured the first line treatment, but upon returning home had not walked since. Dr. Sinclair pointed out for chatting particpatants that, “Functional prognostication is as important as mortality prognostication.” At that point in the film, the doctor begins to lay out other options, including going home and hospice, but recants just as quickly saying “or not.”  The theme that keeps running through this video is that suspending aggressive care is somehow equated with doing nothing, and that is a disappointment.

Modern Medicine’s Trade Offs
The sister of the patient who was earlier described as “going back and forth” on his wishes for end of life care confronts the doctors and asks point-blank, “Is my brother dying? I need a straight answer.” Dr. Nelson then clearly answers the sister, confirming that he is indeed dying.  When interviewed sometime later, Dr. Nelson states in the film, “The availability of the therapies has created a fiction that we can orchestrate this one way or another.” But the doctor does concede that the existence of technology adds to a doctor’s pressures.

This is the point in the film where  two of the featured patients are described as having been released home. In one case, Dr.Osman seemed particularly unhelpful, “we could do everything to get you back home, but the bleeding could start again.” So what are the options? No details on their end of life treatment is provided whatsoever. @DonaldHTaylorJr responded in his tweet, “They really need a follow up show….these are what the other choices look like; concurrent pall, hospice.”

Given the depth of the subject matter, the high caliber of the moderator (@ctsinclair) in guiding the Twitter chat, and the superb quality of the film from Frontline, all the ingredients for a compelling and illuminating discussion were assured. If the producers of the film had been listening, they must surely know that we want a sequel dealing with hospice and palliative care in a straight-forward manner. Whether that happens or not, it is clear that this mode of learning sparked interest, passion and greater discussion. We certainly faced up to this health topic.


In Pinball a TILT Stops the Game. In HCSM a TILT Expands the Value.

November 18, 2010

TILT http://tilt.tripdatabase.com/ is a Web Site that addresses a key aspect of learning: Reflection in Practice.

TILT is a place for a HCP to record their clinical learning experiences within a community. A member records a summary of what they learned with references. That entry becomes a personal learning log shared within a community. Users maintain a record of what they have learned, input received from colleagues, highlights of a learning need (problem), and solutions. TILT is social and it has an affective. It’s an ideal tool to reflect on learning in order to apply it in practice. Experiences that are reflected upon become action.

Donald Schon introduced Reflection in Practice. It is based on the fact that in education and medicine practitioners are engaged in life-long learning. At the center of life-long learning in medicine is experience. Experiences are continuous touch points in learning for HCP. When HCPs have a clinical experience (problem) they use that experience to learn through reflection.

Reflection in Practice is a way for learners to reshape what they have learned while applying it in practice. The learner reflects on what is happening as s/he tries out the skills (called reflection-in-action) and after s/he is finished (called reflection-on-action) (Schön, 1989). In both cases, the goals are insights that facilitate both continued learning and application after learning is over.

Reflection in Practice is associated with improved quality of care, personal and professional growth, and closing the gap between theory and practice.

What struck me about this site beyond its importance for clinician learning and their practice is its application for patients.
Think about our #HCSM chats on Sunday night. After those chats you go to a site to log what you’ve learned. Others comment. Now imagine that taking place over time. It becomes a log of your HCSM learning specific to topics/problems you are interested in. You and others in your community are sharing experiences and putting those experiences into action. For me I get input on solving the problem of identifying a methodology to measure SM outcomes in clinical practice. And I put it into a grant and a study. Experience, reflection, and action.

Now imagine a site similar to TILT where patients can maintain a log of their disease specific learning experiences that is part of a larger learning community. It offers great benefits.

This type of site gives SM an added dimension. Patients can track learning based on experiences within their healthcare world or track problems they are seeking to solve. They can monitor changes in their knowledge based on their experience over time and apply what they’ve learned to their HC. It is also a place patients can receive input from others who have similar experiences. They can search for knowledge from others who have solved similar problems.

It is a community of practice for patients built around an ever-evolving set of experiences and reflection. It is not a static source of knowledge but a dynamic place for reflection on experiences that becomes knowledge put it into action. In my estimation this is a next step in SMHC. This can become a place to monitor and manage a personal continuum of knowledge in healthcare within a community of learning.

@marksphone


Want to Improve Communications with Your MD? Your Healthcare Social Media Network Should Include a Pharmacist or Physician

November 12, 2010

An article published in Journal of Health Communications (15:629-655) titled: Who are the Opinion Leaders? The Physicians, Pharmacists, Patients, and DTC Rx Drug Advertising ( http://tiny.cc/4k0s3 ). Annisa Lai Lee examined a 2002 FDA survey. She found that patients searching for drug information in the mass media, hybrid media, small print (DTC ads), 1-800, and the Internet were more likely to seek information through interpersonal communications (think SM today) channels like HCP. These information-seeking behaviors influenced their physicians with various drug-requesting behaviors. In the end physicians only prescribe requested drugs to patients who are influenced by HCP not the mass media.

Mass media and the Internet may not be powerful enough to sway a physician to prescribe the requested drug and patients would not switch physicians if they did not prescribe. But patients who consulted a HCP (e.g. pharmacist) about a drug were more likely to switch physicians if they did not receive the requested drug.

Lee concluded, physicians (opinion leaders) are infrequently swayed by media-educated patients (followers). Physicians remain influenced by opinions of their colleagues. “…the power of interpersonal communications still is stronger than mass media in case of DTC advertising.”

Though the data was from 2001 (a lot has changed) and only examines the impact of DTC advertising on physician/patient behavior it points to ideas beyond drug requests that are relevant to SM in HC:

• Physicians and patients alike are influenced more by professional opinion leaders than by the mass media.
o If you want to engage your physician use SM as one tactic to build your knowledge
o Include all media in your HCSM network and use that as a basis for discussions with your physician after consulting with other HCP
• Become your own opinion leader by including a pharmacist or other HCP in your HCSM network

@marksphone


Social Media Supports Our Troops

November 11, 2010

BBC News has published a story discussing how Facebook, Twitter and other SM techniques can be used to support veterans after they return from service overseas.  I can see great strength and great potential in this approach.  Military units survive unbelievably trying circumstances largely through unit cohesiveness and mutual support, and I can only imagine how deeply the loss of this support is felt after units return from overseas and individuals begin to go their separate ways.

These SM links will allow veterans to keep in touch with each other and with others who have shared their experiences, and will allow veterans’ advocates and caregivers the ability to monitor for concerns or problems that might need attention.  This approach can be of tremendous benefit if it allows veterans to work out service-related emotional issues that might otherwise develop into symptoms of depression or PTSD.  It could also allow caregivers to look for veterans who appear to be struggling to re-acclimate to civilian life and connect them with necessary resources to ease the transition.

These SM approaches prove the benefit of social networks in both promoting health and wellness, and also in impacting and changing individual behavior.  Considering the well-documented mental health challenges that veterans face and the large number of veterans of our current conflicts overseas, SM stands to fill a critical and increasing need.


E-centives and Online Health Programs

November 10, 2010

In a recent article posting from Employee Benefit News on the success of online health programs, the author summarized a study that confirmed their popularity while also noting gender-based differences in acceptance. (Read it here) The highlights mentioned that the top three reasons for joining an online health program were the same for men and women:

  • weight loss
  • health improvement
  • financial incentives

Under employer-provided options, the primary motivation for men and women was financial incentive. In one example cited in the article, $100 gift cards for big box retailers and paycheck deposits that offset insurance premiums were considered most attractive by employees. These findings are the perfect behavior levers that can be harnessed to create a working preventive health program.

In particular, by taking the biggest drivers identified in the study above —weight loss and financial incentives — a highly motivating health program can be designed. Imagine offering a weight loss program, co-created by the employee and employer to help drive healthful change. This could include membership in a Weight Watchers group, provision of healthful snacks at the office, break time for walking during the day, a reduction in insurance premiums for reaching targeted weight loss goals, etc. Whatever the employer and employee agreed upon, those elements should aim to include a financial incentive component tied to weight loss goals. The costs for implementing the program should become tax-deductions to the employer.

The study cited above noted that men were more likely to be engaged in an online program that managed a health condition than women. However, both men and women were primarily interested in weight loss where their online health program interests were concerned. Women were much more active in engaging in electronic coaching than men. These differences can be integrated into the design of an e-health program as well. Given that women use online mentoring, it would make sense to include electronic reminders and encouraging messages into any e-solution.

Once the program is in effect for a year, both the employer and employee can refine the health program to gain greater efficiencies. Let’s say the initial weight loss goal is met, but other related health issues are deemed worthy of attention. The employee can suggest the health program now include revised goals, e.g. weight training to improve upper body strength or flexibility classes for greater body limber. Likewise, weight loss maintenance may very well require incentives to keep the pounds off, and those program elements should be assembled by employee and employer together to get the right mix.

One of the more striking findings from the study is that 56% of participants changed their health maintenance approach or the health of someone for whom they serve as caregiver. This means that there’s a ripple effect from online health programs for employees that extends into their family and friend network. The most compelling outcome from the study is that 74% of participants claimed to have achieved their goals and changed behavior.  Given this powerful model, what more incentive do we need to adopt it?


AMA Social Media Guidelines

November 9, 2010

The American Medical Association has issued new guidelines intended to help physicians use social media (SM) safely and appropriately.  The initial press release is online.

 

The key points in the new guidelines appear to be in agreement with much of the HCSM discussion online and with previous posts and discussions on this site: be professional, be careful, be private when necessary (both with one’s own information and always when discussing issues with patients).

 

My one concern is the recommendation that physicians monitor their internet presence and make sure information is accurate and updated when necessary.  This is easy enough for sites we might use regularly (blogs, Twitter, etc) but will be much more difficulty when dealing with physician rating sites and the like.  How much time would that require?

 

I intend to look for the full policy document.  We will post and address here once we are able.


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