The Wicked Health Care Webs We Weave

October 26, 2010

Never shy retiring wallflowers, the Health Care Social Media (HCSM) group on Twitter pitched a flurry of ideas on what ideal features they would wish to see on their doctors’ Web sites during their October 24th, 2010 chat.  Given that not many doctors even have Web portals, the exercise itself is somewhat ambitious. Nevertheless, the enthusiasm and the breadth of imagination provided by this crowdsourcing exercise makes clear that the demand is present and that there is much that health care providers can do improve the current model.

Here is a synopsis of what the HCSM tweeting participants suggested:

  • Trustworthiness — @foxepratice and @marksphone urged that a doctor’s site be, “a trusted resource for knowledge and community, in the broadest sense. In one example, @pfanderson suggested that links to government sites related to the physician’s specialty be provided.
  • Convenience — @RichmondDoc suggested that a doctor’s site can be a place where patients can, “review/discuss labs, e-mail, and maybe schedule appts.” @DrJonathan went one step further: “I like when practice websites offer new patients to fill out all necessary forms online before their 1st appt.” That idea was roundly supported in the HCSM circle. The popularity of this idea was only exceeded by @ddiamond’s yearning for online scheduling ala the OpenTable model: “If a yoga studio can do it, why not an MD?”
  • Security — This attribute was echoed by nearly everyone in the HCSM chatroom, ensuring that HIPAA protection was provided on their physician’s Web site. Specifically, the group noted that a secure portal was a minimum requirement, bolstered by a clear notification of the doctor’s privacy policy.
  • Basic Information Provision — For some, simply providing hours of operation,  and contact information (including emergency contact details) was considered a good start.
  • Accessibility — This hallmark was interpreted in various ways as an essential quality of a doctor’s Web site, from being interactive and easy to navigate (as @thehealthmaven requested) to providing true accessibility to people with physical challenges (as @Healthpolicygrp noted).
  • Beneficial — @nickdawson suggested that, “it should do something or be of value for me and get out of the way of finding info.” Echoing this point, @MeriLizzie argued for information on rare conditions that affect dental health from dentists. @pfanderson commented that the site could also offer, “Tips to make yr visit more useful / tips on when to call the doc/when not.”
  • Outcome Reportability — @Marksphone urged that the doctor’s Web site gather patient entered data for better tracking and long-term outcome assessment.

@pfanderson boiled down these recommendations in pithy fashion. The ideal doctor’s site must indicate, ” How2FindMe; WhoIAm/WhatIDo; WhatIWantU2Know; People/Places/Info I Respect; MyCredentials/Memberships; Personal/Hobbies.”

These suggestions are not merely blue-sky chatter.  Many in the group stated in point-blank fashion that a physician unwilling to even create a Web site meant that the doctor was behind the times and not likely to meet their needs. To quote  @susangiurleo, “No website, I won’t be a patient. Lack of online presence makes me think they are out of touch.” As patients grow more empowered in their health care management, doctors are well advised to integrate this “wish list” of web-centric elements into their medical tool kit. Their success and viability may depend on it.
(Care to   about this? Just click on the link.)

The Patient Is In: Sourcing and Verifying Online Information

October 24, 2010

Turning Your Doctor On to Discussing Web Information

To offer a well considered article on how to invite physicians to address health-related questions that are prompted by material patients encounter online, our blogging trio (M. Dimor, C. Gonzalez and Dr. M. Ryan) decided to tackle the topic from our unique perspectives as patients and doctor, respectively. Here’s what we came up with:

In approaching your doctor to consider queries stemming from your research on the Web, you might begin by pointing out that more patients are looking online for answers. This trend truly creates a need for doctors to provide clarity and direction. Patients want to ‘partner’ with their health care provider (HCP). To ignore this trend or avoid it may be counter to improving outcomes and managing changes in their practice.

While this might not be a motivator for all doctors, it is worth mentioning to your physician that providing a sounding board for your web-drawn information allows you to play a more powerful role in your health management. It is a balance of autonomy and paternalism that this sharing provides.[1]

Looking at it another way, by encouraging patients to share what they have gathered online, physicians enhance the decision-making process. This approach then becomes a tool to improve delivery of care.[2] It serves as a starting point for your doctor to begin instructing you and to learn what else you seek medical counsel for, in keeping with the Patient Protection and Accountable Care Act. [3] There is also the added benefit of better understanding and establishing reasonable expectations for treatment outcomes, managing future conflicts and assisting with in-depth risk vs. benefit discussions.

Of course, if the appeal to better treatment weren’t enough, there are also powerful financial reasons. “A patient armed with the information and empowered to make decisions in partnership with their clinician has the potential to have a major impact on cost, quality and outcomes,” says Floyd J. Fowler Jr., PhD, president of the Foundation for Informed Medical Decision Making (FIMDM), a non-profit organization in Boston. “Shared decision making consistently improves the quality and value of the medical encounter by allowing the doctor to focus on the issues that matter most to the patient.”

While all these admonitions are not necessarily required to convince your doctor that entertaining web-based information is good your discussions, it well worth understanding the physician mindset and heading off resistance in all its dimensions. With that in mind, assure your doctor that discussing web-gathered medical data does not violate evidence-based medicine (EBM). Rather, it provides your practitioner with insights on how you make health choices, including your concerns and preferences.

What Patients Would Like: A Short Wish List
Depending on the level of web-based sophistication, patients may wish to share the latest on what studies they have uncovered in their research to clippings from various generic medical web sites. What is more important is that patients be assured that the information they bring to their doctors will:

o Improve access to their physician

o Help them better understand their physician’s clinical decisions and the management of their illness or care

o Help their physician to better understand and address patient concerns and needs

o Present the patient accurately

o Indicate why this information is important to the patient

o Not spur an unwelcome reception that triggers self-imposed censorship

No matter where on the web sources are collected, patients need to know that their doctor is open to hearing about what prompted their questions or concerns. Over time, with the physician’s guidance, the patient will learn what works and doesn’t work to communicate his knowledge and understanding. This process serves as a feedback loop that helps patients better comprehend what works well in managing their care. Physicians should not ignore or shrug off any information presented, but instead use it to motivate and drive management and improved treatment.

Just as doctors have a responsibility to listen to patients, patients should be clear about what they bring to a doctor’s consideration. For doctor’s visits to be effective, patients should take the time to ask themselves these questions when carrying web-based information to their doctor:

o Why is this information important to me?

o What does this information say?

o What don’t I understand about what I have here?

o Does this information fit with the goals my physician has set for my care?

o What do I want my physician to see when s/he reads this?

o Why is this information more important than other information?

When making your yearly check up appointment, be sure to ask how your doctor would like to entertain information on health issues captured from the web. Ask “should I summarize my concerns and then bring in my notes or photocopied sources?” or inquire if you should provide a synopsis via email before your visit.

The key in doing this before you reach your doctor is that you will make clear your expectations and provide ample notice for your doctor to jump into the conversation with parameters or helpful formatting requests (e.g. frame your question and indicate what led to your concern or confusion). It also psychologically informs your doctor that you are an active researching e-patient. This helps the doctor in giving you “homework” by suggesting better sources to self-educate.

If you have a disease condition or a specific disease-related question, ask your doctor how s/he wants to field your questions when they spring from health info online. Write down exactly what your question is and have mercy on your doctor by not bringing in every print out from the Internet. Highlight the passages in the material that triggered your question.

You might also suggest creating a “virtual basket” where non-urgent queries may be sent to the doctor before annual check-up appointments. For healthier patients who don’t see their doctor very regularly, they might not have an opportunity to raise topics of interest triggered by online articles. For example, the online literature is all over the map on whether a women over 40 should have a mammogram. If a woman over 40 is healthy and doesn’t have a medical need to spur a doctor’s visit, she may not have a chance to discuss this topic and other screenings she should be considering. By banking questions away for the next check-up, this approach allows the healthy patient a way to stay connected and establish a relevant medical dialogue.

As patients continue to reach for answers online, it is time we as patients and physicians used this medium to build better health care collaboratively.

One Physician’s Perspective (Dr. M. Ryan)
Doctor/patient relationships are complicated, dynamic, and unique.  Therefore, I am hesitant to make any general statements about how physicians feel about patients’ providing research or information found in online searches.  Similarly, I am not sure how widespread my opinion is among my colleagues.  These are my thoughts about the use of patient-provided information as well as the problems and challenges I anticipate might arise.

Clearly, not all information available online is reliable.  Studies have indicated that the sponsored links that appear at the top of search pages are often inaccurate.  At the same time, even accurate information might not relate directly to any one patient’s condition or care.  Therefore, all information found online during patients’ searches must be viewed as possibly useful or relevant, not definitively so.

I believe deeply and strongly that medical care is best and most effective when patients are informed and empowered participants in their own care.  As a physician, it is very difficult to provide care to patients who are disinterested or who have a poor understanding of their medical conditions.  Patients who have the desire to learn more about their care are likely to be more willing to take necessary action to improve their health and are more likely to adhere to agreed-upon plans of care.

At the same time, it is not as easy as saying, “Bring in your information and we will review it together.”  Physicians face myriad time pressures and competing responsibilities.  The 15-20 minute visit you schedule with your provider is expected to include your registration, nursing intake, physician visit (history and physical exam), negotiating a plan of care, writing prescriptions and referrals, arranging follow-up care and writing the visit note.  If you have ever wondered why physicians run late, this is one big part of the answer. A physician’s face-to-face time with a patient amounts to maybe 7-10 minutes of the visit, if physicians are to stay on-schedule.  At the same time, health care providers make and return phone calls, review labs, deal with insurance companies and pharmacy benefit plans.  Any additional topic of discussion, therefore, becomes another task requiring time and attention.  If your visit is supposed to cover your high blood pressure and diabetes, a deliberate review and discussion of patient-provided research becomes one more task that needs to be balanced within that 7-10 minute window.  That is a very difficult task, and is one reason why so many providers balk when patients bring in on-line information to review: not because the information might not be valuable or reasonable, but because of the time commitment.

Similarly, review of patient-provided information is made more difficult by the nature of our current health care delivery and payment systems.  Physician payments are determined by the insurance company contracts they sign, and cognitive specialties (such as family medicine, general internal medicine, and pediatrics—primary care specialties) are reimbursed much less than interventional specialties (such as surgery, gastroenterology, etc).  As reimbursements lag and office costs increase, more and more providers feel the pressure to bring in additional income.  If a provider is in a cognitive specialty, the most obvious answer is to increase the number of patients seen daily, with less time allotted for each patient.  Furthermore, providers cannot usually be reimbursed for non-face-to-face care such as telephone conversations or e-mails.  In this setting, a detailed discussion of patient-provided information is even more difficult.  Until our healthcare delivery and payment systems adequately value face-to-face, patient-centered care, physicians and patients will continue to face significant obstacles to forming effective, mutually rewarding relationships that empower patients and enhance care.

The financial motivation noted above as a reason providers should consider patient-provided information–that doing so will affect costs of care)–is unlikely to motivate an individual provider very much.  The cost savings are likely to be systems-wide, and might benefit insurers and other payers by reducing tests and referrals.  This will provide no clear financial benefit to the individual provider.  In fact, the provider might end up bearing more costs: if a patient’s visit takes longer because of reviewing online information that patient provided, the provider may either have to see fewer patients or deal with patients upset that the provider is running behind schedule.

In light of these concerns, here are my suggestions to make patient-provided information helpful for all parties involved:

  • If you plan to bring information in for review, it helps if your provider knows about this ahead of time and has a chance to review the information before your appointment—ideally a week or two in advance.
  • Provide your doctor the information you have found from the perspective of informing discussion, not as a prescriptive request/demand.  The information you found might not be accurate, or might not be relevant to your particular situation.  Providers need to factor in any other illnesses you might have, your other medications, etc., when considering your information’s value.  Additionally, physicians (for better or worse) are very protective of our professional status and responsibilities. Trying to force your physician to do something you want (as opposed to discussing the options) can make your physician defensive, and may result in an end to effective communication.
  • Schedule an appointment if you have significant information to review.  You might think you have a simple question: should a woman over 40 have a mammogram?  The answer, though, is complicated: what is your family history, what is your individual medical history, what is your personal risk of breast cancer?  These factors are individualized, and will take some work for your provider to answer.  If the information you have is going to take your provider a considerable amount of time, requiring a meaningful amount of work, then it seems only fair to set up a visit to discuss in further detail.
  • Let your provider know early on in the doctor/patient relationship that you would like him to consider the  information you provide when negotiating your plan of care.  Figure out the ground rules for your provider, and ask how he would prefer to review the information you bring.  If the provider is not willing to discuss this, then consider finding another provider (if possible). There is no sense in beating heads together over this if there is no likelihood of resolution.
  • Be brief.  Give your provider a short synopsis of why this information is valuable to you, and ask his opinion.  Offer to leave the information for review (if you were unable to provide it ahead of time) and to discuss further at your next visit.
  • Be respectful.  If your provider does not think your information is helpful, don’t try to strong-arm or convince him.  Ask why he came to that conclusion to better understand the provider’s clinical experience and insight that resulted in his decision.  If you disagree, ask your provider if he might reconsider. Understand that it might take time (and another visit) to make that decision.

I agree with many of the suggestions listed above:  more and more patients are going to be seeking information on their own and this information can enhance care.  However, it is not as simple as it sounds.  For patient-provided information to enhance the doctor/patient relationship, both sides of the relationship need to be considered and the benefits need to accrue to each side.  Provider’s workdays are already full, filled with challenging encounters and competing obligations.  Medical care is more effective when informed and empowered patients participate in their care-related decisions in partnership with empathic and humanistic doctors.  This takes respect, understanding and patience on both sides.  The value of online information will vary and will require that both parties be willing to review and renegotiate its use over time.

[1] Godolphin, W. “Shared Decision Making,” Healthcare Quarterly,  12(Sp) 2009: e186-e190,; see also McLaughlin, D., “Shared Decision Making,” University of St. Thomas, August 2, 2010,; “Patient Preferences in Health Care Decision Making,”; see also Walker, T., “Shared decision making gains recognition as patient-centric care model,” Managed Healthcare Executive, April 1, 2008,

[2] Politi, M., et al,”The Importance of Communication in Collaborative Decision Making: Facilitating Shared Mind and the Management of Uncertainty,” Journal of Evaluation in Clinical Practice, Sept. 12, 2010,

[3] 111th Congress (2009-2010) H.R. 3590, Library of Congress,; The purpose of HR3590 is stated as, “The purpose of this section is to facilitate collaborative processes between patients, caregivers or authorized representatives, and clinicians that engages the patient, caregiver or authorized representative in decision making, provides patients, caregivers or authorized representatives with information about trade-offs among treatment options, and facilitates the incorporation of patient preferences and values into the medical plan.”

The Health Care Revolution Will Be Tweeted

October 13, 2010

When asked about the large bronze camel on his desk LW Frohlich owner of a design/advertising agency during the 1950’s and 60’s (one of the first in the world to do advertising for the pharmaceutical industry) would say, “It’s a horse designed by committee.” A sentiment apparently shared by Gladwell on the impact social networking sites like Twitter yield on society, expressed in his latest New Yorker article:

On October 3rd 2010, participants in the Health Care Social Media (#HCSM) chat on Twitter were challenged to take up Gladwell’s opinion:
“ Malcolm Gladwell said FB/Twitter can’t change the world ( or solve ‘human problems’ of motivation. So, can Twitter and Facebook really impact healthcare (and motivation)? (Gladwell theorizes no).”

It appears the #HCSM participants felt differently:
• MeredithGould Consider this: Gladwell might be wrong.

• sixuntilme @HealthSocMed The diabetes community is VERY motivated through FB and Twitter connections. Patient communities = better outcomes, IMO

• @MHoskins2179: Communicating w/my D-tweeps keeps me accountable, sane, healthier. I am in better health becuz of Fcbk/Twitter/blogging.

• RichmondDoc I think the extent to which SM will influence motivation & behavior will depend on the extent to which we make meaningful connections

• @kstansberry: T3: FB and Twitter won’t cure disease, but can be great tools for collab. & attitude change. Many small changes lead to better health

• @hgazay: #hcsm T3 obviously! In cases such as orphan disesases FB might be the only way to connect with similar patients and share

• doctoranonymous #hcsm T3 Advocating change is done in the digital world. Performing change is done in the analog world

Gladwell sums up his thoughts nicely when he says, “Are people who log on to their Facebook page really the best hope for us all?” For those of us in the medical field, is social media (SM) the best hope for health care (HC)? Will participants in HC and SM drive changes to patient outcomes? Will SM change HC behavior?

To answer these questions, let’s begin with Gladwell’s premises, boiled down to the key points below:
• SM will not change the world because activism that can motivate population changes will not occur through SM. True activism is based on a different type of network and participants.
• The key to successful activism are strong ties to others who are active and reside within a hierarchy.
• SM is driven by weak links. Weak links are the source for new ideas and information. But weak links do not create strong ties that drive activism and change.
• Living , breathing networks have a hierarchy. SM by design has a very weak hierarchy and is, in most cases, leaderless.
• SM succeeds best when you don’t ask much of the network participants. To drive change participants must be highly active and reside in a hierarchy.

Can SM change the world? In my mind, “no,” especially when Gladwell uses the definition of activism as that of the 60’s Greensboro, NC version as the standard. A Tweet-up will not drive racial equality. A Tweet-up can bring those who are true activists together but, as Gladwell asserts, Tweeters are not the highly motivated “Red Brigade activists.”

Recent data indicates a small percent of participants in SM/networks are creators (see Josh Bernoff’s article on Social Technographics ). The vast majority of participants in SM watch, listen and learn (spectators). Since there is not centralized leadership or hierarchy motivating and driving the majority into taking action, change is difficult. Joiners must be highly motivated so change can occur or to even move up the ladder to creators. Mr. Gladwell, you do not have to be a creator to be motivated, active, learn and change.

Science tells us that there are self-reported differences in empowerment between “lurkers” and “posters” in online patient support groups, according to a recent study conducted by researchers in the Netherlands (read the full study at “Lurkers” (those who do not actively participate by sending postings) scored significantly lower than “posters” (those who actively contribute by sending postings on patient support group web sites) with regard to “the empowering process,” “the exchange of information,” and “finding recognition.” The outcomes between lurkers and posters did not differ in regard to, “feeling more confident in the relationship with their physician,” “improved acceptance of the disease,” “feeling more confident about the treatment,” “ enhanced self-esteem,” etc. (p<.0011). The conclusion of this study established that lurkers benefit from support groups and networks. This is important because it supports the idea that communities or network participants can rise equally in knowledge and understanding, no matter their level of participation. So, weak connections count online.

The chart below is from a 2008 report written by Noah Elkin from iCrossing based on research by Opinion Research Corporation. This presents a pretty compelling argument about the importance of SM for patients seeking to access health data. We see patient online behavior before a physician visit and afterward. The patient gleans information, researches more and participates online. Hence, learning is occurring. It is interesting to note that “health care provider” is not surveyed in the chart. If there was a physician resource that patients could access, I wonder what this data would look like?

Some additional facts about healthcare and the web, taken from Kantar Media (
• 89% of the 178 million Americans who have gone online in the past month have performed health research.
• Reasons for going online: 71% seek knowledge about a condition, 59% are researching a symptom for themselves or someone else
• 56% of respondents said a health care provider makes a health web site trustworthy. 46% look for inclusion of academic articles or scientific research to indicate trustworthiness.
• 79% feel the web offers a wealth of resources in HC and 74% are cautious about which web sites they access for HC
• 77% of recently diagnosed patients turn to online sources for information, while 81% turn to a HCPs, and 51% rely on traditional print media

I agree with Gladwell and believe SM is primarily made up of weak links that are not especially capable of achieving activism that changes society. Still, SM remains a place to learn and listen. Because it is a weak link, it exchanges new knowledge and information quickly and efficiently. (See the post titled “SM in HC is More Than a Cute Name” to learn more about weak links and strong links in networks.) Members of networks absorb vast amounts of knowledge and information. This is one reason SM and HC works as well as peanut butter & jelly. I see patients involved seeking to solve health care problems as varied as they are.

Health care motivates us differently. Health care in many instances is about survival. Health care is complex and fraught with problems not easily solved. People with illnesses are more motivated than people without illness. Someone fighting cancer is as motivated for themselves or their family member as anyone in the Red Brigade. Health care activism is about one’s own self. The shortsightedness of Gladwell’s statement is that when it comes to social media and health care, the transformation concerns one person—yourself—not a landscape or a society.

As an advocate of SM, I know the power of patients who help each other, who tweet, blog, chat and challenge their health care providers with new ideas and questions. But this is not the activism Gladwell speaks about. It is one patient at a time multiplied by thousands every day. HC now is about individuals advocating for themselves and each other. It is a movement of one created by a vast network of information, knowledge and experience.

Let’s return to Gladwell’s quote: “Are people who log on to their FB page really the best hope for us all?” I see his words differently; people who log onto FB have the best hope for themselves in learning to solve their HC problems. They are doing it. What we are not seeing are the outcomes. It is easy to see outcomes or movement when 10 people sit in at a Woolworths. We can’t see outcomes if one patient lowers his blood pressure and that change over time when measured against someone not active in SM. Was it the diagnosis, the diet learned online, the friends on the network nagging the patient to exercise or the physician? Outcomes take time and need to be designed. As a group, we should be recommending and pushing for outcomes to measure the effect of SM on HC.

In the end, Gladwell is right that SM will not save the world. But SM, networks and other technologies, when used within a smart HC strategy, can improve patient outcomes. Patients want to change and get better and live and learn—the research data demonstrates that. The weaknesses Gladwell identifies are real but can be overcome to improve HC if we leverage the elements in health care, social media, and our primary care providers (PCP). SM networks for HC should be smaller and more functional to increase patient participation. SM networks for HC need to have some type of hierarchy in order to keep growing at a steady pace. SM networks for HC should welcome “long ties” for new information, as in offering a space for new information to be shared from external sources, while also supporting “short ties” among influencers, as in providing greater means and opportunities for key stakeholders to offer their insights and wisdom.

How can we achieve this? The revolution in HC can, in part, happen with SM if we identify strategies that focus on smaller units of measure. Functional networks should be built around a physician’s practice base. The physician becomes the natural leader of the online network. (Physicians should not practice here, but they should participate.) It becomes a “Red Brigade” cell. Members are highly motivated and active in their HC because they share a common need to solve their HC problems. They are motivated by each other, guided by their PCP. At its core, it involves one patient and one practice applying SM to drive change. It shares knowledge and experience from the Web. It is not WebMD but MyMD, the home of my HC network. That is the best hope we have to change HC.

Rules for Successful Health Care Social Media Interactions

October 7, 2010

1) Be respectful


2) Be helpful


3) Be careful regarding personal health information privacy issues


4) Listen as much (or more) than you speak.

Let’s Be Good Social Media Neighbors

October 7, 2010

While social media offers great potential in health care–there are already some early positive results in providing direct medical and fiscal benefits to individuals and organizations—it also brings new concerns and new responsibilities .

At the same time, these opportunities open up new concerns and new responsibilities.  SM thrives off of positive interactions, which means that those who are involved must develop the necessary skills to contribute to the discussion.  These skills include an ability to engage in discussion without triggering arguments, a willingness to help others when necessary, and an understanding of the value of linking people with similar interests who might not otherwise connect with each other.  There are also concerns about privacy–both in terms of one’s personal information as well as one’s specific health issue disclosure.  These topics were discussed during October 4th’s #hcsm chat.  In my mind, this is similar to learning how to be a good neighbor, and find ways to be friendly and helpful, engage in good productive discussions, and share appropriate information.

The first part of the #hcsm chat focused on whether SM social skills are learned or whether they are born of common sense.  I strongly believe that these skills are learned by observing and listening to other (more experienced) SM users and by becoming more active and vocal as one gains more confidence.  Personally, I have learned much about being a good SM citizen through interacting on the #hcsm chats and from online exchanges with individual SM users.  I also think a certain amount of common sense is involved, but the SM environment can be daunting for new arrivals who may need some guidance or advice to find their footing.  As @MeredithGould noted, though, “‘Common sense’ doesn’t exist without a moral compass to guide behavior re: protecting/respecting privacy.”  Experienced SM participants can help model proper behavior for newcomers who may make errors of omission or commission.  This seems to summarize the consensus: common sense courtesy and respect is a necessary starting point, with the finer (and necessary) details of SM social skills being passed along to newcomers as they become more active.  Without good SM social skills, conversations and discussion rapidly devolve into arguments and much of SM’s potential can be lost.

There was also a sense that SM veterans can help newcomers avoid making mistakes that have been made before.  @doctoranonymous commented that “All the social media skills Ive learned were through all the social media mistakes I made,” while @drseisenberg noted that “A social media master is one who has made every mistake possible in social media.”  Clearly, there can be a steep learning curve, and part of being a good SM neighbor is helping others avoid known pitfalls such as inadvertently publishing personal private information or sending out excessive or offensive messages.

Privacy is another issue that needs to be addressed in SM–both privacy about oneself and privacy about others.  On the one hand, we might not want to reveal too much about ourselves in SM settings.  On the other hand, some SM partcipants must ensure they are protecting the privacy of others, such as health care providers protecting patients’ information in compliance with federal law (HIPAA).  Similarly, attorneys who use SM must take care not to divulge confidential client information.  Other information might not be legally protected in the same way, but still is not appropriate for a public discussion, e.g. revealing a friend’s medical condition would be morally suspect.  While there are bright legal lines in some cases, a good deal of our sense of privacy is somewhat generational, with younger SM users more willing to make personal information public.  My sense is that as a medical professional I must abide by the most stringent standards in place and therefore I avoid posting any private information that could be patient-related.  At the same time, I do not post much personal information about myself.  I presume that if I post something online, it can be found if someone looks hard enough.  Therefore, if I do not want my information to be public than I need to keep it offline.  For me, this means I don’t identify my family, address, employer in public SM settings, and I do not discuss any specific patient issues online.  Other participants felt similarly: @lisastockwell: “You have to assume SM is a public conversation and act accordingly. Same rules apply to conv. you have in a packed waiting room.”

Some of the actions we can take to protect privacy may seem like common sense, but there is still a need to ensure that SM users are aware of the necessary steps to protect both their own information and that of others.  @OSUSquire wrote “I also think that schools, from elementary to med schools, need to be teaching responsibility around digital tools.”  Likewise, @macobgyn discussed how he “spoke at a middle school last wk about STD/pregnancy privation and included sexting and responsible Internet behavior”.

[An aside: the privacy issue brings to mind a topic from the September 20th #hcsm, in which the discussion topics included whether health care providers and/or patients have a right to privacy and anonymity online.  I refer you to that chat summary for now; I hope to address it again in the future.]

We must not presume that SM users–especially new SM users–know all the etiquette and common practices involved in SM use, and we cannot expect SM users to recognize all the ways in which private and personal information can be disseminated online either.  As established SM users, those of us who are already involved should help pass this information along to those who need guidance.  For newcomers, they need to remember a few crucial approaches to engaging in SM:

1) Be respectful


2) Be helpful


3) Be careful regarding personal health information privacy issues; and


4) Listen as much (or more) than you speak.

With these common-sense suggestions and some experienced guidance, newcomers and veterans alike may speed the real promise of using SM for better health care.

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