3…2…1…liftoff?

Unlike my colleague, who has written an energetic and thoughtful post about PhRMA social media guidelines, I have an easier task.  The second topic of this week’s HCSM discussion was how best to successfully launch a new account (Twitter, blog, etc) in an already busy on-line environment.  Many of the participants in these weekly discussions have significant online presences of their own, and offered helpful (and likely hard-earned) advice.  Some of the suggestions that received the most attention:

@sixuntilme: “Know the audience and the key players in the topic you’re jumping into – and also your goal in engaging w/ the community”

@jodyms: “Take time to listen and lurk.”  “Listen, lurk, support, & affirm. Stay away from negative and create fabulous content. Think big.”

@miller7: “Also – Community engagement is essential. Too many times people think they know their audience when they have no clue.”  “It’s all about branding. Give it a name and a mission – people will follow if it aligns with their mission”

@consultdoc: “Key to any new account is to provide value and be unique. Lots of me toos in almost every healthcare niche”

@NickDawson: “you start by following, listening and commenting on content from others”

@kileigh7: “first you need to see if there’s a need for that type of website/community. Sometimes stuff is really redundant”

@saltzberg: “start small by building relationships. Be where your audience is and start listening.”

@PhilBaumann: “Gr8 Question. 1) Create quality content 2) Be a master of conversation 3) Be a loveable peacock”

@foxepractice: “Step 1. Start to Listen. Step 2. Repeat step one. Step 3. If you can add value, only then GO”

@crgonzalez: “Follow the leaders; build ties; share value info; use hashtags; blog; pass along other worthwhile resources to SM folks”

@TheRealDanSfera: “content is king! stop bs’ing and start creating great content while expecting NOTHING in return.”

@rjenbarr: “SM can improve a patient’s experience, comfort people, bring wellness, increase health & access. Doesnt have to be marketing”

@TeresaBasich: “approach new accts/engagement from perspective of humility and desire to learn, too.”

I realize this is a lot of examples, but I think it’s relevant to post them all here because I think they key messages are few and are clear:

1. Engage in the community you aim to work with. Few/none of us like a newcomer to step in to an environment and claim they are better, smarter and further ahead than we are.  Often, it’s not true and is a rapid way to generate animosity and ill will.  Even if it is true, people will probably still discount what you say as a result of the way you’re saying it.  It is much better, and to our group much more effective, to start by meeting the people you hope will read and react to your contact.  “Meeting” people online includes reading their posts,  replying constructively to their content, and trying to become a resource even before you try to launch your own account/service.  Through online dialogue you can assess others’ needs and offer your knowledge and experience as resources to advance knowledge and learning.  Through such interactions, true connections are formed.
2. Provide added value. Inherent in the question is the recognition that the internet is a very busy place and it can be very hard to find valuable signal within the noise.  The last thing any of us needs is more static and more distraction as we try to find those services and accounts that will inform us, help us make decisions, and be better professionals in our line of work.
3. Start slow. Many commentators note that overnight successes are few and far between.  Once you launch an account and start developing content, it will take time before your account becomes widely read and recognized.  Sometimes it will feel as though you might be speaking into an empty room.  You must be aware of this, be diligent and consistent, and continue to build connections as you refer back to point #1.
4. Be honest and engaging. And have a sense of humor. Over time, dishonest accounts, undercover advertising and other such content will be uncovered.  If you are starting a new site (like this one you are currently reviewing), be up-front when you don’t have perfect answers or when you need help.  Ask for help.  Seek connections with others active in the same arena you are and ask if they will provide feedback (or even contribute content and guest posts) to what your writing.  And have fun.  Health is a serious matter, but even so there is space to enjoy what you are doing and to make friends while dealing with significant issues.

A second thread to the discussion centered on the question of whether blogs and websites provided additional value to more interactive (and faster moving) social media platforms such as Twitter and Facebook.  The consensus was that blogs and websites do have an important role by allowing deeper discussion, longer reflection, and ongoing interaction between blogger/author and readers.  Twitter’s strength–fast-moving, constantly updated and with a large community actively interacting with each other–also introduces limits.  It can be hard to follow threads and discussions, even if you follow appropriate #tags.  Facebook allows more time for responses and follow-up, but can be a difficult platform to post longer posts.  Blogs allow the writer to take time to develop their thoughts and post a meaningful piece that can dig deeper than often possible on Twitter.  Once posted, blog posts may be easier to read then Facebook updates and the comments allow dialogue and opportunities for authors and commentators to expand on thoughts and introduce new ideas.

Starting a new blog, Twitter account, official Facebook page or website is challenging.  You need to make sure that you are ready for the work, and that you know your reasons for moving forward.  Interact with your intended audience, be a new resource that provides information not found elsewhere, take your time, and have fun.  Figure out what platform (or combination of platforms) will fit your needs and align with your interests.  Take a deep breath, and launch.

Social Media Guides as Sherpas or Smoke and Mirrors?

In a torrent of tweets, our HCSM chat group considered Roche’s latest foray into the social media arena with its newly minted Social Media Principles. While this is the first public announcement (to our group’s knowledge) by a pharmaceutical company of its intent to encourage responsible social media activity by its employees, there were several concerns raised as to whether this framework created more confusion than clarity.

There are two sets of guidelines, one for employees officially acting on behalf of Roche (called 7 Rules for Professional Online Activities) and one set for employees who in their personal capacities speak about Roche (called 7 Rules for Personal Online Activities). Let’s tackle the Professional Rules first.

The Professional Guidelines are clear in that they instruct employees to follow their Code of Conduct and Communications Policy and require identifying themselves as Roche representatives.  It also admonishes employees to be sure to take care about reporting financial data or speaking about Roche products, referring them to check out the company’s public domain information and to get legal approval. No surprises here. They take a proactive stance in advising that relevant social media sites be monitored so that the employee can respond.

Oddly, then Roche suggests that the employee have rules in place (not Roche) to handle possible Adverse Event reports or illegal content, adding that the employee should preserve data “for possible legal hold” should they bear such an obligation. These rules of AE reporting are not transparent, but given that this set of guidelines pertains to Roche employees on the clock, every department that is charged with SM duties is now on notice for creating AE reporting rules in place. Let’s hope they consolidate their AE reporting rules for uniform application.

Now on to the hornet’s nest: The 7 Rules for Personal Online Activities. Here they are in full:

1. Be conscious about mixing your personal and business lives.
2. You are responsible for your actions.
3. Follow the Roche Group Code of Conduct.
4. Mind the global audience.
5. Be careful if talking about Roche. Only share publicly available information.
6. Be transparent about your affiliation with Roche and that opinions raised are your own.
7. Be a “scout” for sentiment and critical issues.

The first rule is very confusing. It appears to give some latitude to express one’s self, but in the accompanying detail, it ends up denying that liberty entirely. Roche states, “There is no separation for others between your personal and your business profiles within social media.” Well then, wouldn’t it be clearer to say: Do not speak about Roche negatively in your private lives. That is the stance taken by Mayo Clinic in its guidelines to its employees, where it states: “If your blog, posting or other online activities are inconsistent with, or would negatively impact Mayo Clinic’s reputation or brand, you should not refer to Mayo Clinic, or identify your connection to Mayo Clinic.” So Roche needs to speak more clearly about what it wants.

Rule #2 reinforces rule #1 in making clear the employee is responsible for his/her actions. Alas, the additional detail Roche offers in explanation isn’t helpful, but rather intimidating: “Anything that brings damage to our business or reputation will ultimately be your responsibility.” Really? Anything? Tell legal they flunked the part about proving damages.

Roche goes on to clarify that they want people to exercise common sense, but they could have said that without the bullying tenor. Here’s how Vanderbilt University tells its employees to use good judgment, though it is a bit heavy on the melodrama, “What you say can and will be used against you… FOREVER. Everything you say or do online is likely to be stored forever, even if you delete it.” I would have preferred they feature a photo of Dragnet’s Officer Joe Friday next to their admonition, but it gets the point across.

Rule #3 is clear in asking employees to abide by their Code of Conduct (e.g. no insider trading on social media, be respectful of all people, etc.).  Nothing to complain about here.

Rule #4 is asking a bit too much from anyone without a fully staffed legal team at the ready to review your tweets on the fly. When Roche says “mind the global audience,” it goes on to explain that, “While your message may be accurate in some parts of the world, it could be inaccurate or violate regulations in others.” How is someone from the mailroom going to know that? This rule makes the solution offered concerning the first rule moot. Roche is really saying it would rather its employees not speak about the company at all. The best way to stifle discussion is to toss a global burden of confusion on employees who might want to discuss a new drug development pursuit by Roche (all public info), but now must consider if any statement falls into legal limbo on some other continent. Patently absurd. A better tactic would be to encourage employees to couch their statements as bearing on their stance as natives from their country: “As an American, I think that…”

Rule #5 actually provides helpful direction albeit within a straight-jacket. It advises employees to share only public information and to only speak on topics on which they are knowledgeable.  So far, so good.  However, where there is any uncertainty about that information being public, the employee is instructed to consult the Communications Dept. for approval. That is a bit of a restraint.

I prefer Mayo Clinic’s tone and approach: “Ask the Dept of Public Affairs if you have any questions about what is appropriate to include in your blog or social networking profile. Remember that if you wouldn’t want your manager or others at Mayo to see your comments, it is unwise to post them to the Internet.”

Roche finally provides a concrete example of what to do when it describes Rule #6, requiring transparency in the employee’s affiliation with Roche: “Example: I work for Roche. All opinions expressed are my own and do not necessarily represent the position of my employer.” Clear as bell and reasonable too.

And now for the rule that raised hairs on everyone’s neck, Rule 7. Roche requests that employees act as “scouts” for “sentiment and critical issues.” It doesn’t demand this activity, but notes that employees can help the company out by looking  for online material that can help or hinder it. In its explanation, Roche asks employees to consider sharing  “positive or negative remarks about Roche… by forwarding them to your local communications department.”

This seems appropriate until the next two sentences in its guidelines that shift from asking to mandating behavior of an off-the-clock employee. Roche states:

” This is most important in the case of so-called “Adverse Events”: When you come across information where somebody mentions side-effects after having taken one of our drugs in a credible and identifiable way, you have to immediately forward such information [my emphasis] to the global Drug Safety Team for further action.”

So, in an off-the-clock capacity, the employee is not only burdened with understanding global regulatory structures/impacts, but is now charged with flagging AEs to the Roche Drug Safety Team? And what if they don’t? How is the employee responsible? I won’t address how this employee would credibly assess some AE online, as the detective skills needed might not meet Roche’s requirements.

While the basis for SM guidelines usually stems from a need by employees to have direction and assistance in what they can achieve online, I sense that the Roche Guidelines do more to stifle activity than inspire it. No where in their rules is there a point of view that  encourages employees to talk about their successes at Roche in helping patients, or how by listening to patients Roche is adapting its programs or drug development aims.  The guidelines have lost the social in social media. Perhaps if better informed from the clinical perspective, Roche could really use social media in a way that instructs its institution on how to improve patient relations and ultimately the treatments these patients need.

Why is social media so powerful?

The success of H1N1 vaccinations and prevention was driven in large part by the huge broadcast media component. It was the lead story for weeks if not months and, true to the media, it was sensationalized to the nth degree. There were many critics of the government’s SM component. But there existed a strong non-government SM component. People, parents, families, everyone was interested in not contracting H1N1. We were all washing hands, taking children out of school, avoiding riding subways, and going online chatting. I would say there was an AFFECT from all media sources both traditional, digital, and social that drove learning and outcomes.

Broadcast drove the social aspect, which in turn drove the affect, and resulted in outcomes.

The question for me comes down to this, how can H1N1 success and the agencies become a model for collaboration and improved outcomes on a smaller scale without the media driving the message? How can we leverage the problems patients, consumers, HC professionals want to solve and multiply the affect? What do we need to learn about digital learning in order to improve HC outcomes?

The topic was “What should collaboration (in social media) between public health agencies and the broader public health community look like?”

I saw the topic differently “What should collaboration (in SM) do and why?’

Many comments and opinions focused on the word collaboration and the need for public health agencies to foster dialogue with the public. Many opinions stated that collaboration does not exist.

@CarissaO: In a word, dialogue. Public health agencies need to improve their listening skills, translate listening into action.

@AndyKetch: Broadcast of info and request for feedback to improve how info is broadcast and turned into action. It’s collaborative/action!

@RichmondDoc: T3: a good model would be if govt/agencies provide info they have, but also are willing to accept reports from public

@Miller7: Dissemination! Public health can learn a lot about how to use social medical for spreading info.

Let’s look at social media. To paraphrase Janice Joplin, ‘collaboration is just another word for affect’. SM is social. It expects an exchange of knowledge, opinions, understanding, experience, and reflection in order for it to succeed. This social aspect is a powerful motivator for learning because it creates bigger affect. A library, digital or otherwise, of information where the user is left to find what they need and make their own judgments about what is valuable what is not, what to use and what not to use is an important tool. But motivation and drive comes from the need to find solutions to problems and the affect I believe is less then it is in a social situation. Affect increases memorability.

Do not mistake the above for my belief that reading and engaging in learning is without affect, cannot drive change, or improve knowledge (outcomes). It happens; we all know the emotional power when we are engaged in that OMG moment in learning. What happens in a social environment is a powerful multiplier of that affect. There is a greater and many times more positive affect. Learning is not just the reader reflecting but also the individual drawing on another’s experience to create an additive affect, which upon reflection changes knowledge. Reflect on the #hcsm chats and your experience and what you’ve learned. Did you leave pumped? Are you reflecting on what you heard today? How did you incorporate it into your work or life?

There were many comments regarding where public health agencies can improve their function in SM:

@pfanderson: I am HUGE fan of public health agencies/advocates in social media, but find they R largely undiscovered resources by target audience

@CarissaO: Health agencies/orgs need to invest in better understanding the behavior and needs of their audience

CarissaO made a very important observation. The question I have is do we define understanding in regards to the health behavior and needs of learners or do we examine the learning behavior and educational needs (i.e. problems) of learners? Which one will have a great effect on improving outcomes in HC?

It is well documented, health agencies/orgs know what behaviors need to be changed, less sugar and salt. Exercise more, stop smoking, lower your cholesterol, etc. are all well known and understood. What I think we don’t know enough about is how learners access and incorporate knowledge in this digital world. We know how adults learn. What we may have to do is study how adults learn on the web and what they do with their knowledge and how they incorporate that knowledge into behaviors, and finally what are the outcomes of that. Is it different in a social setting vs. search and read.

Finally, let me present an idea on how we may create a better tool for quality HC search, improve the ability of agencies to leverage SM and improve affect in learning.

We are all familiar with Pandora Music? http://www.pandora.com/. They have an algorithm to help you find the music you like associated with something you currently like. Say you put in Prince Royce, they will find other musicians who share the Bachata roots, etc.

Why can’t we create algorithms for diseases or illnesses like Pandora’s radio stations? The algorithm would be written around diabetes. As with Pandora, each song (content) gets reviewed by some parameters and is meta-tagged. This algorithm would do the same on the content, assessing where is it from, author, references, child or adult, etc. And like Pandora, it would serve up information (chats, articles, groups, papers, etc.) according to your profile, education, needs, and problem you are looking to solve. And like Pandora the content is in a library, not a Google search, which rates by top hits of others who may or may not be good at selecting information. This library of content is based on a HC associated algorithm and your profile. Will this solve the problem of reliable information, improving SM and learning affect?

Online Sources of Health Information: Who We Trust

Our HCSM group offered a wide range of primary web choices for health information from our August 15th chat, captured below:

• Professional Organizations and related online publications (e.g. American Medical Association, AMA Medical News; American Academy of Family Physicians)
• Medical Journals
• Research Hospitals (e.g. Mayo Clinic)
• Government sources (e.g. HHS, CDC)
• Continuing Medical Education sources
• Patient Discussion Forums
• Disease Condition Associations (e.g. American Diabetes Asso.)
• Medical conferences
• Medical librarians
• WebMD
• eMedicine (medical reference source from WebMD)
• EverydayHealth
• Disease condition bloggers
• Twitter doctors (e.g. @KevinMD)
• Other Trustworthy Twitter sources
• Clinical and Policy resources (Mark Ryan provided his personal list of news and policy Twitter sources: http://twitter.com/RichmondDoc/medical-news-and-policy/members )

• News sites
• Wikipedia
• Google Scholar

While there was wide diversity among our HCSM chat participants on where they looked for reliable health information, there were some strong opinions backed with study data about superior sources. Patricia Anderson (@pfanderson) cited new research confirming that med students researching on Google Scholar and on UpToDate performed better than using MEDLINE (Source: http://pmj.bmj.com/content/86/1018/459.abstract).

Sources with a strong track record of reliability or distinguished conduct were heavily favored, as with the Mayo Clinic. Some mentioned that they gravitated towards “trusted online sites related to health care issues,” but many people didn’t disclose what constituted a trusted source. A clear turn-off were sites that were too heavily slanted on the marketing side.  Others stated that only the most basic of health and science information is gathered online given the Web’s intractable nature in sorting out “trusted opinion from [the] fringe.”

It is this thicket of often unqualified information that prompted H. Jack West, MD (@DrWestGRACE) and Kelly Young (@rawarrior) to form their own websites with reliable information (http://cancergrace.org/;  http://rawarrior.com/). Young stated, “Rheumatoid arthritis information was not readily available to patients, and with all the misinformation floating about RA, I knew I could help solve this.” Young added that she wanted to bring the patient’s point of view to the fore, so offering a web site of her own made sense.  (Given that HCSM’s own Patricia Anderson wrote a book on online health information, we certainly invite her to weigh in on this topic.)

In response to the follow up query on whether one’s own doctor provides online information, only one group member reported that her offline endocrinologist provided online sources and links, though this expert wasn’t online with a professional web page.

As a corollary discussion, Mark Dimor (@MarksPhone) observed that while we have our own preferences, the general public will vary in its choices based on the health literacy status of each person: “Someone newly diagnosed w/lung cancer goes where if they have only a high school education? A college grad goes where first? Each demographic is different.” Indeed.

If the hurdles to accessing online health information include not being able to differentiate the charlatans from the honest folk, it will take a considerable amount of time before the general public approaches the cyber-well for a long drink. As it stands, our own HCSM clan, a sophisticated lot if there ever was one, holds a diversity of opinions on where to seek online health answers.  If the kids at the head of the class haven’t achieved uniform consensus, there is little to suggest that those less knowledgeable will know where to go. That is perhaps where our work begins:  to cultivate clear reliable sources that we can agree on and to point the way for our less savvy friends.  If we can’t trust ourselves to do this, then who?

Can We Be Facebook Friends?

An issue that has been been discussed in other venues is whether doctors and their patients should be “Facebook friends”.  There have been various posts on other sites, but last night’s #HCSM chat brought it up.  The quick consensus, especially from the medical folks, was that this would be a bad idea.  Too many potential conflicts and too many possible lines can be crossed–at least on a personal/private Facebook page.  I expressed my concerns–I consider Facebook a private space: I interact with friends and family, people I know.  I consider Twitter a different creature altogether: I am throwing my comments, thoughts and opinions into the public forum and allowing the public to decide if they listen or not.  Facebook is, for me, a much calmer arena.  A place where my nieces can tell me what they’re up to for the weekend, or where my friends can invite each other to barbecues.  I don’t consider any of these to be public issues.  As a result, I’ve done my best to lock down my Facebook profile so that only my “approved” friends can see postings and activities on the account.

There are potential serious concerns as well, such as unprofessional behavior that may show up on Facebook pages (an issue seen in a recent study of medical students’ social media presence) or breaches of patient confidentiality (as seen in California, where medical staff posted pictures of a seriously injured patient directly on Facebook).  There are clearly limits which we all agree must not be crossed, but there are others that fall into a more difficultly-defined gray area.

The answer, for many professionals, is to have two different Facebook pages: one personal for friends and family, and another public page that can be the official and professional contact site for patients to interact with their doctor.  This allows patients to have a way to interact with their physician in a less-official capacity.

Not all were in agreement.  Some participants felt that that physicians and other medical professionals should be willing and able to be completely open on the web.  They raised the issue of whether anything should be posted online if one does not want it to be seen, and noted that patients hire their physicians as much as physicians opt to work with patients.  There was also a sense of frustration: patients clearly want to have a more direct (and a more personable, if not personal) relationship with their health care provider.  Current medical practice does not easily allow the necessary time for patients and doctors to develop a therapeutic bond easily; Facebook (or other) interactions could allow patients and doctors to have a stronger connection.

The issue can also be complicated when a friend becomes a patient: how does that change the doctor/patient relationship, Facebook sharing, etc.  My thoughts are different in that situation: if you were already a friend, someone I’ve known in real life, then you likely know much about my family, my other friends, etc.  We already trust each other, and we already communicate outside of our professional doctor/patient relationship.  To me, this is very different from accepting friend requests from patients–that is the situation where I feel uncomfortable becoming “Facebook friends”.

The conversation did open a theme that is sometimes lost in the discussion of health care and social media.  It is clear to me that there is a strong need for patients to connect with and interact with their physicians, and to form the necessary therapeutic bond.  Conversations and interactions allow us to form the relationships that humanize us and that humanize health care systems.  Health care providers’ Facebook personal pages may not be the best option, but it seems evident that there must be some other way to meaningfully extend doctor/patient interactions.

How can we leverage social media techniques and platforms to encourage productive communication and interaction between health care providers and patients?  Can we use professional Facebook pages more effectively?  Is Twitter a better means of interaction, given that the short posts and updates limit the amount of information that can be transmitted–is that a positive or a negative?  How can technology effectively personalize health care?

First Thoughts

“Social media” (SocMed) is a phrase with nebulous meaning. There are various definitions available, but the formulation that is easiest for me to understand is to consider “social media” as a group of web-based applications and services that allow user-generated content to be distributed and/or viewed online. This would include such sites as Twitter, Facebook, YouTube and blogging sites including Blogger and WordPress. At their essence, each of these sites/services (and many, many other sites not mentioned) allows an individual to find a forum for making their opinions and perspectives known to the world at large. Although the nature of these services differ widely, the common link is anyone (with luck, hard work and expertise) can add to online discussions and express their opinions while also making connections with other users—regardless of where one might be.

The speed at which SocMed is being adopted has accelerated over recent years, and as a result it is becoming a topic of interest in many different areas. My principle interest is in determining the use of SocMed tools in health care communication. Physicians and other providers can enhance their online presence (and possibly, their business) by actively engaging in SocMed. Health care information, treatment recommendations, and public advisories can be distributed widely and to varied audiences through SocMed. Patients can learn about wellness and illnesses, can join virtual communities and support groups, and can have an influential voice in SocMed in ways that may be difficult in person. Patient advocates, researchers, and medical educators can all make contacts and exert influence and discuss ideas with new collaborators that would have been hard to identify before SocMed facilitated interactions.

I believe that SocMed’s influence is going to start effecting health care communication and health care practices in the near future. How doctors and patients interact, how we communicate both personally and professionally is likely to change. Use of SocMed technology and services may improve patient-oriented outcomes in a number of illnesses. Novel educational strategies, for patients and for clinicians, will be developed and we will need to determine their appropriate uses.

I think this conversation is still in the early stages. Significant barriers to use still exist, and conventions of use still need to be established. How SHOULD doctors interact with patients online? How do you ensure patient privacy and confidentiality when communicating online? The conversation can also extend beyond web-based SocMed resources and include furthering e-mail and/or text message conversations. All of this is still developing, but I believe this is a good time to get involved. As physicians, if we do not help direct the process, then the process will eventually direct us.

SocMed has the potential to empower patients, make medical care more efficient, and enhance communication in many dimensions of health care. We should be looking at ways to ensure this will benefit all parties.

My hope is that this blog will become an online resource to further the discussion around healthcare communications and social media, to allow for longer conversations, and perhaps to help establish some “best practices” around the use of SocMed in health care.

Let’s See

Well world here goes the first blog post at Social Media Healthcare: Community of Practice. Our hope is that this blog becomes a source of information, learning, and a sharing of ideas that will help improve HC outcomes through the application SM to HC strategies.