Using Social Media for Patient Care and Population Health

I'm very interested in the ways we can use digital technologies to improve clinical care and population health. Over the years I've written a number posts on the topic (if you want to see them, the Facebook and Social Networking links will get you there). 

Digital technology in health care is a booming area - a form of the wild west, with some terrific innovations and a lot of hype and racing to make a quick buck. Next week the Harvard Pilgrim Health Care Ethics Advisory Group, which I have the privilege of chairing, is discussing the ethics of telemedicine. It's going to be a standing room only gathering with more than 40 participants.

I'm a big fan of Leslie Kernisan, a geriatrician in the Bay Area. I've only "met" Leslie via email, but I follow her terrific GeriTech blog. Last week she wrote a post on geriatricians and social media, in which she spoke in very practical terms about whether, why, and how geriatricians should make use of social media technologies. With Leslie's permission I'm republishing her post here:

Patricia Bach, a geriatric psychology colleague who is active in social media, recently emailed me a question: how to encourage more clinicians in geriatrics and long-term care to use social media?

In particular, she asked me “What do you feel is the ROI for geriatricians to use social media/networking in their professional roles?”

This is an interesting question to consider. After all, we have a limited number of geriatricians available for a growing older population. We also each have only so much time and energy in every day. 

So how should each of us be spending our time? How much should be on social media, and do we all need to be using it? 

I myself really like blogging — obviously — but was a reluctant adopter of shorter-form social media. To this day, I have a minimal personal social media presence. I only got going on Twitter because I started this blog in the fall of 2012. For me, Twitter was a good way to learn about digital health and connect with others interested in tech and aging. 

Then I started using Facebook in 2014, mainly because I was focusing more on my geriatrics content for the public, and at that time Facebook seemed to be a better platform for interacting with the general public, compared to LinkedIn or Twitter. (I would say this is still true. 

In adopting social media for these reasons, I was manifesting something that is very important to consider when it comes to physician behavior — or really any person’s behavior — with a respect to engaging in a certain activity:

• What are the most important motivators and interests for the person? What are they most eager to accomplish? How does the activity address those?

• What are the demotivators? What are the downsides to engaging in the activity?

• How much friction or difficulty is involved in engaging in the activity?

You can also consider an activity in terms of “Return on Investment” (ROI), however, this term doesn’t usually take into account how soon the return is going to arrive. And we know that people are much more motivated by concrete returns that happen fast — and are related to something currently of great interest/appeal/fear to them — whereas they discount returns that are coming way off in the future. 

Social media is about communication and networking

Back to social media itself. It is fundamentally about communicating and networking. So to use it sensibly, I recommend individuals — or larger entities — consider the following:

• Who do you want to communicate with?

• What is your purpose in doing so?

• What actions do you hope the audience/people you connect with will take?

• What short-term and long-term results are you hoping for?

• How will this communicating and networking help you advance your most important goals?

• Which platforms are well-suited to your purposes?

• What non-social media methods could you use to achieve your goals, and would that be a better fit given your time/resources/purposes?

It is also important to consider the learning curve of whatever platform and communication strategy one is embarking on, as well as any risks or downsides.
For instance, most social media platforms generate a torrent of information. So one downside is that doing social media takes time and energy, and if you aren’t careful or disciplined about your approach, it can swallow up a lot of time and energy. 

Should geriatricians use social media? 

To answer this question, we should consider it from the perspective and interests of various involved entities. At a minimum these would include:

• The individual clinicians

• The organizations that clinicians works for in some way, such an employer or even an association that a given clinician feels a duty to serve

• Entities representing the welfare of the public, such as government agencies, large non-profits and foundations, and others who try to shape the healthcare environment so that the activity of clinicians benefits society.

Each entity has their own motives, interests, and particular priorities. Needless to say, there is often imperfect agreement between what the clinician is most interested in, the employer is most interested in, and other larger entities are most interested in. 

Whenever I hear someone — we’ll call them the “Suggester” — say “Doctors should do this!” or “Doctors should do more of this!” I certainly think about who is saying it, and what’s in it for them. 

And then I think about how to align that with what those individual doctors are interested in doing. Does this request fit in with the doctors’ interest and motivations? How feasible and easy to implement is it? Is the Suggester in a position to influence the doctors’ work environment or motivating factors? 

If you want people to do something, you need to understand how it fits in with what they are most interested in doing. And then you need to help make it possible and appealing for them to do it. 

An example from the published literature on healthcare social media: 

Here’s a quote from the abstract of a 2015 article titled “Social media is a necessary component of surgery practice.” 

“Each surgeon must embrace the power and potential of social media and serve as a guide or content expert for patients and other health care providers to facilitate and share responsible use of the various media available.” 

The abstract goes on to describe the potential power of social media to “improve consultation and collaboration, facilitate patient education, and expand research efforts…[and] to disseminate campaigns to increase disease awareness and communicate new research findings and best-practice guidelines.” 

I would not dispute the description of the potential power of social media. But it’s not at all clear to me that every surgeon must hence be on social media in a professional capacity. 

Instead, I would say that organizations that represent surgeons and surgical expertise should certainly have a social media presence. Certain individual surgeons may also find it serves their primary interests to be active on social media, either because they are doing it on behalf on an employer or professional association, or because the activity serves their personal projects and aspirations. 

Now, some will say that social media is important for maintaining your professional reputation. I’d say this really depends on what kind of work you are doing as a doctor. If you do research, then it can be good to have a social media presence that enables you to connect with colleagues and the media. If you are in private practice and are having trouble recruiting patients then yes, the right social media activity could help you raise your profile and find more work or patients. 

But most doctors I know are busy, and their biggest concerns relate to their working conditions and their ability to perform what they see as their core work. Usually, this is caring for patients and perhaps maintaining financial viability. For some physicians, it’s getting grants and other forms of academic success. 

Only rarely is it providing health information online to as many people as possible (that’s my project but I’m hardly representative of my colleagues) or even raising the visibility of the clinic or organization they work for, unless they are a designated social media ambassador (or trying to become one). 

Social media IS important to geriatrics and to the cause of improving the health and wellbeing of a growing older population 

To return to the question of whether there’s an ROI on geriatricians participating in social media: 

I absolutely believe that social media platforms can and should be used by geriatricians and related organizations, to help promote better health and healthcare for older adults. 

To begin with, in recent years social media endeavors — such as the Geripal blog — have played an important role in enabling geriatricians to connect with media influencers, which has helped the public become more aware of our field and expertise. The more often geriatric expertise is incorporated into the work of health journalists, the better. 

Then there is providing information more directly to the public. Digital platforms are now the primary way that most adults access information and certain forms of support. Older adults use digital media less than younger ones do, but their use of technology and digital communications is increasing rapidly, as noted by Pew. Pew has also found that family caregivers are often “wired for health.” 

As clinicians providing hands-on care, we should be familiar with the most commonly-used resources our patients and their families are using. These are increasingly digital, although the extent to which they are based on social media seems variable. (I find it depends on topic, niche, patient and caregiver population.) 

If an individual clinician is considering social media, I recommend considering the intended purpose and audience. Especially for those clinicians who mainly provide hands-on clinical work, social media may not be very useful to them. (You can network with colleagues at conferences and keep up with medical news via a few choice websites or journals.) 

However, most organizations should have a social media presence, which means some individuals will spend time maintaining that presence. Having a few clinicians participate in this can be nice, but they should be given time and resources to do it, and to keep up with the ever-evolving social media landscape. 

Social media for health and education 

I don’t have time to review the literature on this topic, so instead I’ll share my perspective as someone who has been creating geriatrics content online since 2008.
For educating and communicating out to the general public, I have found that writing longer content is far preferable to tweets, blog comments, or short Facebook posts. Create something that is more than a blip in a person’s attention, and that really tries to address a question or need. (I don’t personally produce videos but those can be great too. I am now going into audio and podcasting.) This content can be produced for one’s own website, or can be guest-posted to a bigger site with a larger audience. Interactive events like webinars with Q&A capability also have good potential. 

Otherwise, short-form social media (e.g. Twitter, Facebook) can and should be leveraged for dissemination. Such platforms allow clinicians and their audience to share longer content, or to share the notification of an upcoming event or opportunity. 

For learning from the audience — which essential to being truly helpful and to figuring out how to serve your audience — you need to spend a certain amount of time observing/listening, when it comes to what your audience says, does, and asks. Pay special attention to what they ask each other, and what they ask people who are not you, or not in your particular role. It’s also good to invite questions and participate in interactive events. 

Last suggestions for presenting to clinicians about social media 

Walk them through a process for thinking about their needs, their purpose, and how social media might fit in. 

Don’t conflate the needs/motives of the employer or society with the needs/motives of the individual clinicians. 

Provide education to make it easy for clinicians take the next step, if they’re interested.
Provide case studies and examples illustrating how different clinicians and organizations have used social media to achieve their goals. Tailor those case studies to overlap with what is likely to be the interests and goals of the clinicians you are presenting to. Some will be very interested in raising the brand and visibility of their clinic, but that may not be of interest to many geriatricians.

Treating Patients with Respect

Readers of this blog know that I admire Randy Cohen's "The Ethicist" column in the New York Times Magazine. Yesterday Randy responded to a question that connects to confidentiality, the topic of this week's seminar in the first year Harvard Medical School "Medical Ethics and Professionalism" course that I'm part of the faculty for. What follows is the question and Randy's response, with my own additional comments interlaced in bold italics:

Some of my Facebook friends are medical students who post cellphone pictures of patients with what these friends believe to be comical maladies, with captions like “A 5-foot-9 Hispanic male walks into a bar . . .” under a picture of a patient with a piece of rebar piercing his abdomen. The postings don’t include faces or names but still seem questionable. Doesn’t this violate patient privacy? NAME WITHHELD, NEW YORK

Were these soon-to-be doctors engaging in such gallows humor only among themselves, it might be seen as a harmless way to cope with deeply disturbing situations. But although these med students rightly strive to disguise their human punch lines — no, sorry, their patients — that is insufficient. It is essential that those photographed are not identifiable to others, of course, but it is also important that the patient does not recognize himself online. It's not necessarily harmful for the patient to recognize himself in print or online. A current patient should have been asked for permission to use his "story" and ideally should have reviewed and commented the proposed material in draft. But for former patients this may not be possible. The rule of thumb I've used over the years is that a patient's next door neighbor shouldn't be able to recognize who is being described, and the patient himself should feel respected by what he reads.

A doctor should not embarrass a patient or otherwise add to his discomfort, a likely outcome should the patient encounter such an image. The chances of that happening increase as the injuries depicted grow more grotesque and less commonplace. How many 5-foot-9 Hispanic males are impaled with reinforcing rod? It will not improve the doctor-patient relationship when that Facebook image goes viral and the patient learns the doctor treats him like a cartoon. Randy hits the nail on the head here. This injury is one-of-a-kind. In addition to the potential distress from being used as a joke, the photograph could be seen by millions within days, or even hours - and the patient's name is likely to come out.

A doctor that I consulted acknowledges that battlefield humor can be a benign response to harrowing circumstances but tells me in an e-mail that “public displays of such humor on the Internet, along with photos that even if not identified could be identifiable, are inappropriate and unprofessional.” Randy's informant is exactly right. Gallows humor among the peer group can potentially discharge tension and, by relieving anxiety, allow the group to pay the right kind of attention to the patient. I'm most comfortable with this kind of humor when we clinicians apply it to ourselves rather than to our patients. But there's no way whatsoever that this photo should be put onto Facebook, especially as part of a joke.

There is a deeper problem. Rather than simply giving doctors sufficient emotional distance to function effectively, this sort of horsing around might harden their hearts, making them less able to regard a patient as fully human. Such a transformation is not inevitable, but it is worth considering, particularly in a doctor’s training. Unfortunately, we know that on average, idealistic first year students lose much of their idealism, and imbibe a hefty dose of cynicism, by the time they finish their residency. But the student's "inappropriate and unprofessional" posting of the photo creates the potential for an important teachable moment. The anxiety and perhaps horror triggered by the patient's injury represents a reaction physicians must learn to handle constructively. Making inappropriate laughter into a teachable moment is nothing new. In Genesis 18:13-14, Sarah, who is 90 at the time, laughs when God tells her she will have a child. God makes this into a learning opportunity - "why did Sarah laugh?...Is anything too hard for the Lord?" And many med schools do consider that, says the doctor I consulted: “At my own institution, our anatomy professor has paid great attention to this issue right from Year One, when students confront their cadavers in the gross anatomy lab, with a series of well-conceived educational efforts.” As I discussed in a post last year about cadaver ceremonies, this form of teaching about respect is now widespread. Experiential education of this kind reflects an important advance in how we teach about ethics!

Commercial Threats to Social Networking Among Patients

Fourteen months ago I wrote a post about PatientsLikeMe.com, a startup social networking site, that enabled patients with disorders like ALS, MS and Parkinson's Disease, to share experience and contribute to rapid pooling of clinical data in ways that might provide practical guidance. It's an exciting idea, but apart from the omnipresent risk of offering faulty guidance, present in medical appointments as well, it risks cooptation by industry. Here's the most prescient part of the post:

The aim - "providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat the disease" - is important. Patients gather information from other patients anyway, and a networking site potentially that lets them extend their opportunity for learning, as from the 1801 ALS patients who are part of the "community," offers a lot.

But it doesn't require Karl Marx to see the risk in a business model that invites partnering with industry. Word of mouth is potent advertising. It will be nothing short of miraculous if drug and device companies do not seek to influence the statistics, just as they influence CME activities...

Many physicians fear "disintermediation" - the process by which patients circumvent the "middleman" role, gather their own information, and develop their own plans for treatment. This is wrong. The emerging web ventures are like medications, with varying constellations of potential benefits, harms, true claims, and baloney. Physicians can provide a distinctive service as knowledgeable, honest brokers - encouraging patients to use PatientsLikeMe and other new ventures, but educating them about risks, side effects, and false claims.

But an article in today's New York Times by Natasha Singer suggests that the concerns I voiced may be coming true.

If you're interested in the Jekyll and Hyde potential of social networking sites like PatientsLikeMe, I suggest that you start by looking at a YouTube video of co-founder Jamie Haywood. It shows the site's exciting potential to produce rapid summaries and analyses of pooled reports from large groups of patients who voluntarily participate. Then go to the PatientsLikeMe website, and click on "information for industry partners."

I'm not a startup expert, but to me it looks like a brilliant business model. I'm comfortable with the use of real time patient reports as a source of information for responsible medical groups and health plans. But the use of the same material by drug companies to hone direct-to-consumer advertising and other commercial goals is creepy. And with regard to privacy, I wasn't reassured by this statement: "Other members, and sometimes Partners (pursuant to written agreements designed to limit the use and disclosure of your personally identifiable information), will be able to view your Profile Data."

PatientsLikeMe and other entrepreneurial ventures that harness web technologies and social networking can transform health care. But there's a substantial risk of cooptation by industry and corruption by the money that can be made.

This isn't a reason for trying to slow down the entrepreneurial energies, but only naive fools would give blanket trust to the ethical integrity of the new ventures.

Suicide and the Internet

On April 23, G. Paul Beaumaster, Prosecuting Attorney in Rice County Minnesota, filed a complaint against William Francis Melchert-Dinkel, for violation of a Minnesota law that states "Whoever intentionally advises, encourages, or assists another in taking the other's own life may be sentenced to imprisonment for not more than 15 years or to payment of a fine of not more than $30,000, or both."

The complaint details a horrifying story. Melchert-Dinkel, a 47 year old husband, father, and licensed practical nurse, was obsessed with death and suicide. He trolled websites about depression and suicide, and contacted people who were considering suicide, using pseudonyms like "Cami" and Li Dao." He offered information on the best way to kill oneself, and encouraged people to do the act. In the guise of a sympathetic female nurse, "Cami" suggested that the potential suicide would be happier in heaven.

In 2008 "Cami" entered a suicide pact with Nadia Kajouji, an 18 year old student in Canada. Nadia would kill herself by jumping off a bridge. "Cami" would hang herself the next day. Nadia jumped, and died. "Cami" didn't. When the police confronted Melchert-Dinkel he confessed to having encouraged Nadia and scores of others to kill themselves.

I support the Oregon Death with Dignity Act, under which people with terminal illness can obtain prescriptions for lethal overdose, under carefully controlled circumstances. But Melchert-Dinkel's actions have nothing in common with the thoughtful, though still controversial, program in Oregon. Melchert-Dinkel, by his own testimony, was motivated by a perverse fascination with death. He exploited suicidal people the way rapists exploit their victims.

If Melchert-Dinkel wrote essays praising suicide, he would be misguided but within his right to free speech. But encouraging suicidal people to kill themselves is like shouting "fire" in a theater. It's an incitement to action, not a free expression of opinion. I'll be surprised if he does not spend time in prison. He deserves punishment.

I tried to visit suicide chat rooms to see what kinds of interactions occur. But my access via my employment site is blocked for sites labelled "violent." The web has been a godsend for many people with serious ailments, who "meet" others with the same conditions and swap advice and support. Unfortunately, sites like those Melchert-Dinkel preyed on bring together vulnerable people, many of whom suffer from psychiatric illnesses. In U.S. society adults have a "right" to consort with whomever they choose. But the Melchert-Dinkels of the world don't have a right to exploit their penchant for death.

(The complaint against Melchert-Dinkel makes fascinating (though grisly) reading. It's available here.)

Google, Facebook, and a Suicidal Patient

A recent Washington Post article posed a fascinating ethical question about psychotherapists and the web:

As his patient lay unconscious in an emergency room from an overdose of sedatives, psychiatrist Damir Huremovic was faced with a moral dilemma: A friend of the patient had forwarded to Huremovic a suicidal e-mail from the patient that included a link to a Web site and blog he wrote. Should Huremovic go online and check it out, even without his patient's consent?

Huremovic decided yes; after all, the Web site was in the public domain and it might contain some potentially important information for treatment. When Huremovic clicked on the blog, he found quotations such as this: "Death makes angels of us all and gives us wings." A final blog post read: "I wish I didn't wake up." Yet as Huremovic continued scanning the patient's personal photographs and writings, he began to feel uncomfortable, that perhaps he'd crossed some line he shouldn't have.

Across the country, therapists are facing similar situations and conflicted feelings. When Huremovic, director of psychosomatic medicine services at Nassau University Medical Center in New York, recounted his vignette last year at an American Psychiatric Association meeting and asked whether others would have read the suicidal man's blog, his audience responded with resounding calls -- of both "yes!" and "no!" One thing was clear: How and when a therapist should use the Internet -- and even whether he or she should -- are questions subject to vigorous debate.

In my view, Dr. Huremovic got the ethical challenge exactly right. With his patient in the midst of treatment for an overdose, the information might have life and death implications. Perhaps his patient wrote about what substances he intended to ingest. That could be important for the emergency medical treatment itself. Or perhaps the blog would suggest a stronger suicidal drive than Dr. Huremovic was aware of. That could guide psychiatric treatment after recovery from the overdose.

But what about confidentiality?

From the perspective of the patient, the clinician's responsibility to do what he can to save his patient's life and health clearly trumps confidentiality concerns. The patient had been speaking to the public through his blog. The patient's friend knew about the blog and about the treatment with Dr. Huremovic. If, in the future, the patient accused Dr. Huremovic of "violating my privacy - you went to my website without my permission," Dr. Huremovic would rightly respond - "I'd rather risk disturbing your concern with privacy than attending your otherwise avoidable funeral!"

If the patient was a philosopher familiar with rule utilitarianism he might respond - "the issue isn't just the impact on me - your actions will reduce overall trust in therapists...in the future patients who are suicidal may avoid therapy out of privacy concerns...what you did increased the risk that people will die from suicide!" Here Dr. Huremovic could make a two part response. First, he might challenge the empirical claim - "I think it's just the opposite - how could potential patients trust therapists who would let theoretical concerns outweigh commitment to their patient's lives?" But beyond the competing hypotheticals Dr. Huremovic could say "In theory you could be right about the impact on others - but given the uncertainty, combined with the emergency, I felt - and continue to feel - that my primary duty was to your safety."

In the course of looking to see whether therapists have expressed opinions about situations like this I came upon Dr. Keely Kolmes' social media policy (see here):

It is NOT a regular part of my practice to search for clients on Google or Facebook or other search engines. Extremely rare exceptions may be made during times of crisis. If I have a reason to suspect that you are in danger and you have not been in touch with me via our usual means (coming to appointments, phone, or email) there might be an instance in which using a search engine (to find you, find someone close to you, or to check on your recent status updates) becomes necessary as part of ensuring your welfare. These are unusual situations and if I ever resort to such means, I will fully document it and discuss it with you when we next meet.

I sent Dr. Kolmes a fan letter for this model of ethical analysis and clear communication with patients.

The web continues to pose new, important and fascinating ethical questions. It's heartening to see colleagues like Drs. Huremovic and Kolmes identifying the issues and dealing with them so thoughtfully!

Facebook, Psychotherapy, and Professional Ethics

Melinda Lewis, who teaches Social Work at the University of Kansas, raised fascinating questions about social media and social work ethics on her excellent "Classroom to Capitol" blog yesterday. I've excerpted four from her post, with my responses in italics:

1. Every social media expert advises that success requires an infusion of ‘personality’ in order to connect with one’s followers. I get this–I see that I receive much more response to tweets or Facebook updates, for example, that include some personal tidbit–but it makes me wonder, when does this raise the risk of dual relationships? How much disclosure is too much disclosure? How do we engage with our targets without blurring those boundaries in potentially harmful ways? Should you ever ‘friend’ a client? Now that the opportunity exists, is it harmful to the professional relationship to decline?

By "dual relationships" Melinda presumably means situations in which a social worker or other mental health clinician betrays professional responsibilities by carrying out other agendas with the patient. (The extreme form of this in my own profession occurs when psychiatrists have entered into sexual relationships with their patients.) In principle it's easy to assess the ethical appropriateness of "disclosure" - does it serve the interests of the patient, and is it consistent with the norms of the profession? In practice it can be tough to figure out. Being too stiff and formal tends to undermine clinical trust and effectiveness. But "inappropriate" disclosure can distract from the goals of the treatment and, potentially, lead down a path to various forms of harm.

The best way to "engage...without blurring boundaries" is to be aware of the question and to consult with colleagues at moments of uncertainty. The problem I see with "friending" a client is that Facebook, unlike email, isn't 1:1. I felt entirely comfortable using email with my patients. But Facebook, by design, is a networked process. One isn't just communicating to one's patients or being communicated to in one's clinical role. I'm not in practice any more, but my current sense is that I'd be using email more and more with patients, but not Facebook.

A patient who proposes "friending" to a clinician might be hurt by a decline, or, at the other extreme, relieved. What would be harmful to the professional relationship would be not reflecting on what was wished for in the request and how the decline was interpreted.

2. What about confidentiality? While any ethical social worker would refrain from including personal details about clients in social media interactions, is it ethical to, for example, include some of the outline of a client interaction on a personal blog? Assuming that all identifying information is changed, does that make it okay? What about if the blog receives ad revenue that goes directly to the social worker?

I found the following a useful rule of thumb: if I drew on material from a particular patient, it should be disguised well enough so the patient's next door neighbor would not recognize who I was talking about, and if the patient read what I wrote he or she should feel respected. Advertising revenue is not different in principle from honoraria for talks or royalties for books, but advertising has the risk that the patient might not want to be associated with the advertiser.

3. Should social workers be allowed to blog or post or tweet about their organizational life, including frustrations with their practice setting? You see employees do this all the time, from “TGIF” Facebook updates on a Friday afternoon to generic “so sick of my boss” comments on different sites, but, given social workers’ obligation to our employers, are we forbidden from engaging in this kind of catharsis?

Writing about organizational life is fine if it's thoughtful reflection about professional issues. But we shouldn't kvetch about work conditions - that could undermine the confidence other patients have in the organization. If we're critical of our work sites our responsibility is to advocate for change, fix things, or, if it's not tolerable, get out.

4. Given the viral and unpredictable nature of social media use, how can we really ever receive informed consent from our clients for their participation? For example, a client gives permission for a photo to be posted on the agency’s blog, but then the blog gets tracked back by several other blogs, and someone tweets the post…and this is exactly what your organization wants, in terms of the response from the community, but now many more people have seen it, and in different contexts, and probably with adding their own commentary…and that’s not what you told the client when you asked permission.

These complexities mean that we should envision these possibilities with our patients - a series of "what if" questions. Years ago my practice group had a policy against using unsecured email with our patients. I didn't follow the policy. But when patients wanted to use email I made sure they understood that email could be hacked, and that my group advised against using it. If they understood the limitations of email security, and if I thought email advanced our clinical objectives, I went ahead and used it. But Melinda is right that the risks are harder to anticipate with social media.

Facebook Friends, Judges, and Conflict of Interest

Florida's Judicial Ethics Advisory Committee was recently asked the following question:

Whether a judge may add lawyers who may appear before the judge as "friends" on a social networking site, and permit such lawyers to add the judge as their "friend."

The majority - correctly - said "no," in accord with the expectation that judges will not "convey or permit others to convey the impression that they are in a special position to influence the judge." The principle behind the majority's conclusion is this:

Irresponsible or improper conduct by judges erodes public confidence in the judiciary. A judge must avoid all impropriety and appearance of impropriety. A judge must expect to be the subject of constant public scrutiny. A judge must therefore accept restrictions on the judge's conduct that might be viewed as burdensome by the ordinary citizen and should do so freely and willingly.

What's most interesting about the advice is the minority view on the Committee:

The minority believes that the listing of lawyers who may appear before the judge as "friends" on a judge's social networking page does not reasonably convey to others the impression that these lawyers are in a special position to influence the judge. The minority concludes that social networking sites have become so ubiquitous that the term "friend" on these pages does not convey the same meaning that it did in the pre-internet age; that today, the term "friend" on social networking sites merely conveys the message that a person so identified is a contact or acquaintance; and that such an identification does not convey that a person is a "friend" in the traditional sense, i.e., a person attached to another person by feelings of affection or personal regard...the minority concludes that identification of a lawyer who may appear before a judge as a "friend" on a social networking site does not convey the impression that the person is in a position to influence the judge...

Two things stand out about the minority position:

First, there's a generation gap with regard to social networking, so that for some, a "Facebook friend" isn't necessarily a "real friend." But since some Facebook friends are indeed real friends, it seems to me that the minority is wrong. An observer would have to do a differential diagnosis of the term "friend." That process can't be counted on to protect public trust in the judge.

Second, both majority and minority were solidly focused on appearance. They don't ruminate about whether the judge is really friends with the lawyer and actually subject to influence. To maintain public trust judges don't simply scrutinize their motives - they have to start by scrutinizing how their conduct would appear to a skeptical observer.

We've not made that distinction at all well in medicine. Later this week I'll be writing about how failure to take appearance seriously is again undermining an important American Psychiatric Association initiative.

(The Florida Judicial Ethics Advisory Committee opinion is available here.)

Should Therapists Snoop in Their Patient's Facebook Site?

A colleague recently asked me this question:

What do you think about therapists going to a patient's Facebook site if that site is open to the public, not just to people who the patient has friended? My younger colleagues think it's OK - like reading about your patient in the newspaper. It doesn't feel right to me but I'm not sure why?

What a terrific question!

From the perspective of privacy ethics there's nothing wrong with going to the Facebook site. After all - the patient has structured it so that anybody can come to the site to see what's there. In that limited way the younger colleagues are right - it isn't a violation of privacy.

But it matters what kind of a clinician we're talking about here. If a primary care physician was working with a patient on a self-management problem like difficulty sleeping or weight loss and was getting nowhere, I wouldn't fault her for going to the Facebook site as long as she was prepared to tell the patient about it, as in:

I've been troubled about why we're not making any progress in what we're working on - I just don't get it. So instead of running more tests I went onto your Facebook site. I think I can see what our problem is...

But what about a psychotherapist doing the same thing? Here I think the younger colleagues are missing the boat. Psychotherapy isn't just a matter of gathering information as part of the effort to solve a problem. The relationship itself is at the heart of the effort. The commitment on both sides is to use the experience of the relationship on behalf of the treatment goals. It wouldn't be surprising for the patient to see if the therapist has a Facebook site, but it would be important for the patient to bring the fact of the search into the therapy. What did the patient's curiosity focus on? What did what he found mean to him? What feelings were associated with the process?

If the therapist and patient were talking about the patient's self-presentation on Facebook it would be fine for the therapist to say - "would it be OK for us to look at it together right now?" That would lead to collaborative inquiry. But it wouldn't be OK for the therapist to go to the site covertly. What was the therapist looking for? Why didn't he bring up whatever the question was with the patient? If the therapist has a question he should ask it. If he goes to Facebook instead it suggests that he feels an impediment to direct work with his patient. That's what's key - not the information on the Facebook site.

Patients, Social Networking, and Moral Complexity

While returning to Boston from New York on Amtrak yesterday, I read a fascinating New York Times article about an internet startup - "PatientsLikeMe."

Like many other health innovations, PatientsLikeMe starts with a personal story. In 1998, Stephen Heywood, 29 years old, developed amyotrophic lateral sclerosis. His older brother, an MIT graduate, quit his job to work on a cure, initially founding the ALS Therapy Development Institute, a not-for-profit enterprise that "uses entrepreneurial spirit and techniques to aggressively seek out, develop, and deliver promising therapies to slow, arrest, and cure ALS."

PatientsLikeMe is a cross between social networking sites like MySpace and a medical startup. It invites patients with specific conditions (thus far ALS, HIV, Multiple Sclerosis, Parkinson's Disease, and, recently, "Mood" conditions) to share their experiences of symptoms and treatments. The distinctive feature of the site is software infrastructure that pools the patient reports and presents "findings" in easy to follow graphic form. The site includes brief stories from individual patients as well.

The aim - "providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat the disease" - is important. Patients gather information from other patients anyway, and a networking site potentially that lets them extend their opportunity for learning, as from the 1801 ALS patients who are part of the "community," offers a lot.

Clinicians worth their salt also learn from patients. It never would have occurred to me to tell patients with schizophrenia who were experiencing auditory hallucinations and talking back to them that carrying a cell phone could help them look less "crazy" on the street, if one of my patients had not told me of the technique.

But it doesn't require Karl Marx to see the risk in a business model that invites partnering with industry. Word of mouth is potent advertising. It will be nothing short of miraculous if drug and device companies do not seek to influence the statistics, just as they influence CME activities. (As an example, see my October 4 posting about how the "Healthy Mothers, Healthy Babies" site endorsed fish consumption in pregnancy in the wake of a $60,000 donation from the National Fisheries Institute).

Many physicians fear "disintermediation" - the process by which patients circumvent the "middleman" role, gather their own information, and develop their own plans for treatment. This is wrong. The emerging web ventures are like medications, with varying constellations of potential benefits, harms, true claims, and baloney. Physicians can provide a distinctive service as knowledgeable, honest brokers - encouraging patients to use PatientsLikeMe and other new ventures, but educating them about risks, side effects, and false claims.

The web situation is one of moral complexity, with multiple opportunities for benefits and harms, combined with tremendous uncertainties. But that is what medicine has always involved!