The Backstory On Social Media and Learning in Health Care

September 26, 2011

Sunday night’s (09/18/11) HCSM Tweet Chat discussed if physicians should point patients to social media, do physicians know if patients are using social media, do they care, and does it matter?

Data has shown that the majority of patients want to be active in their health. Shared Decision Making (SDM) is a proven tool to engage a broad cross section of patients to actively participating in their health care. An added benefit of SDM is that it can engage people with low health literacy and disadvantaged groups. These groups defer to the physician and have poorer outcomes. Physicians engaging in SDM (shared learning) motivate underserved patient populations to become active in their health care. SDM improves outcomes for all patients who are active in their health care.

Shared decision making (SDM) is when patients and physicians work together to select tests, treatment, disease management, and support all based on evidence and the patient’s informed preferences. Shared decision making embraces the patient’s right to make decisions about their care. Both parties commit to sharing information and decision-making responsibilities. It sounds surprisingly like the ePatients, SM, and the Twitter #hcsm chat on Sunday night. Informed patients who are part of the health care process with their physician have better outcomes.

The physician directing the patient to social media is giving tacit approval for the patient to be actively engaged in their health care. Patient and physician are partners in learning. Social media is one tactic in the uptake of knowledge and resides on a larger continuum of learning. Both SDM and SM are part of a learning strategy that have a great deal in common.

When the SM discussion takes place, the physician and patient are engaging in knowledge and learning to improve outcomes. We can assume the patient is either familiar with social media or not. If patients are familiar with SM, we can assume they are active in managing and learning about their health care beyond social media. If they are not familiar with or participate in social media, they may or may not be active in learning about their health. For purposes of this essay, I will assume they are not. This as a binary model looks like the following:

Physician: 0: Wants a patient knowledge partner
1: Wants a less active patient knowledge partner

Patient: 0: Is a knowledge seeker
1: Is not a knowledge seeker wants to be lead

The 0 physician and the 0 patient are a great match because they work together in managing health care. The 1 physician and the 1 patient are also a good match, because they reside in the same space: physician leads, patient follows. Can the 0 physician motivate the 1 patient to become a 0 patient. Will the 1 physician demotivate the 0 patient?

SDM has been well studied and is primarily used in chronic and terminal illnesses or making choices between surgical or medical treatment. The UK is currently examining mandating SDM within the NHS. A study titled “Making Shared Decision-Making a Reality” ‘No decision about me without me’ by Angela Coulter and Alf Collins examines SDM in great detail. http://tiny.cc/0x59e

From that study, Table 1 presents what I see as the bridge between SDM and the ePatients, SM, physician, etc.

A key principle in adult learning is sharing of experiences (expertise) between adults, which create reflection that may become action (change in behavior, new knowledge, etc.). Physicians as noted above have extensive experience/expertise, which they apply to patient management. When patients’ own expertise/experiences are added to the physician’s, new knowledge is created which changes patient management and improves care and treatment.

SDM is a well structured and managed process relying on patient decision aids and tools to help patients understand and participate. Knowledge and information used by the patient to make decisions is provided by the HCP. It is part of the SDM contract. In SM the patient is a self-learner. They seek knowledge from others and other sources. The physician approving or pointing the patient toward SM and learning is performing a less structured more open ended SDM. The question now becomes, if SDM works and improves outcomes and benefits patients, how can we apply and frame those SDM principles along with adult learning to the SM discussion? Can we improve the health care relationship between physician 0 and patient 0? How can physician 0 motivate patient 1 to become an active participant in their health care?

There are some simple steps the physician can do prior to pointing patients to social media:

• Have the patient fill out a short form asking about their knowledge of their disease, confidence in that knowledge, what is their primary source of information, etc.
• What problems specific to their disease/visit do they want to solve?
• If they have done research or participated in social media what did they learn that changed their opinion about their disease?

This short simple exercise prior to the exam yields a great deal of information that incorporates the patient’s experiences/expertise with the physicians’ own perspective to create a new set of knowledge. With this understanding the physician can proceed with the examination and begin to help patients better articulate their problems/needs. In addition, the physician can better guide the patient in their learning moving clinical management closer to the evidence because they are both basing care on shared knowledge and trust. In the end, determining what the patient knows, what are their experiences, and how have they incorporated that knowledge will improve management and outcomes. This information is as critical as the physical exam. It should be part of the patient chart and updated at each visit. Besides tracking physical progress, the physician can track knowledge progress and compare the two.

Pointing patients to social media in and of itself is not a stand-alone activity that yields the greatest benefit. Framing the discussion of SM with an understanding of the patients’ current knowledge base and problems they are seeking solutions for will go a long way to improve outcomes and care. SDM is proven model that can be applied as stand-alone or its principles adapted to physician patient learning. In either case SM alone is only part of the solution to improving health care and outcomes.

This process may take more time upfront but, data demonstrates it yields better outcomes and in the long term saves time and cost. Framing social media recommendations within the larger context of a patient needs assessment is a better model.


Needs Assessment and Social Media: A Match Made in Heaven

March 14, 2011

Previously, I posted an article on outcomes in SMHC. The post stated the following: “An outcome is the result of an experiment or other situation involving uncertainty”. http://www.stats.gla.ac.uk/steps/glossary/probability.html.

We are uncertain about what works in HCSM, the degree to which outcomes are a function of other variables, and why. I presented the views of two experienced market researchers who are involved in measuring and evaluating outcomes. Outcomes in SMHC will aid us in identifying what works, what doesn’t, why, why not, and help identify ways to improve those outcomes. Applying outcomes measurement, needs assessment, goals, etc. to SM in healthcare or any other communication or learning strategy will improve patient care.

Needs assessment is the other bookend of a learning/education plan. Between a needs assessment and the outcome are the objectives, strategies, and tactics to achieve the goals.

I do not view SM in and of itself as a major driver of change in healthcare (HC). It is a tactic, a tool, and one element of any number of strategies (e.g. marketing, sales, awareness, listening, learning, etc.)

In order to effectively apply a tactic to strategy that achieves an objective we need to understand what is happening, why, and what are the needs. A well constructed simple needs assessment can identify gaps in your patient’s knowledge and establish objectives. Once this is done you’ll be able to create a strategy and apply the right tactic. (social media, direct mail, chats, texting,etc.)

What is a needs assessment? Wikipedia provides and excellent place to start: Needs assessment is a process for determining and addressing needs, or “gaps” between current conditions and desired conditions, often used for improvement in individuals, education/training, organizations, or communities. The need can be a desire to improve current performance or to correct a deficiency. The idea of needs assessment, as part of the planning process, has been used under different names for a long time. In the past 50 years, it has been an essential element of educational planning.

The following is from Dr. Bob Kizlik at http://www.adprima.com : “Just remember, any needs assessment is really nothing more than an organized, systematic way to gather information relative to some goal. It is the quality and attainability of the goal that sets the stage for everything.”

Let’s say you are a PCP with an average patient population. Approximately 8.3% of your 1,200 patients have active diabetes. You’ve reviewed your charts and find that there are about 25 patients whose HbA1c is averaging >9%. This is troubling because you are consistent in managing your diabetic population. Why are the majority of your patients’ in better control and this subset is not? To what can you attribute to this finding? What changes you can make that would lower the 9%?
Performing a simple needs assessment would offer valuable knowledge regarding this observation and can identify why this gap may exist and potential ways to close it.

By identifying the 9% you’ve begun a needs assessment–namely you’ve completed a chart audit. At this point your goal should be to determine if what you’re observing in your practice is similar or different from other practices. Are other practices seeing similar numbers to your? Are their numbers a function of staffing?

This can be done by:

Seeking expert opinion from a colleague with a practice similar to yours. Do they have similar numbers to yours? If not what are they doing differently? Is their outcomes a function of staff training, patient education, patient population, etc? Was this a goal they set out to achieve?

Once you’ve spoken with colleagues the next area that you may want to look at are national guidelines. A review of current guidelines may point to areas and actions that can aid in improving these patients HbA1c. It will also provide data regarding reasons patients are not adhering to treatment.

Finally, speaking with patients and staff will give you additional data. There are two ways to approach this. One approach are patients interviews or a survey. But before you begin you’ll need to identify what you are looking for.

These patients are not achieving the goals that the majority of your patients are achieving in regards to HbA1c. You have determined that you are doing the proper education and training and working within established guidelines. The majority of your patients are within the norms. What needs to be understood are standards this group has in regard to their knowledge, their skill in managing the disease day to day, their attitude toward the disease, their own healthcare, and their ability to accomplish tasks (diet, exercise, monitoring, etc.). Remember most people don’t know what they don’t know so direct questions may not help in understanding why that gap exists.

You may want to mail or email the questionnaire to all patients with diabetes in your practice for a comparative data set. Or you can just send it to those within the population you want to improve outcomes for. Another option is to offer to the survey to patients when they are in the office for a visit.

What I would recommend is that you state that the questionnaire is not directly related to them but for you to understand your patients with diabetes. It is a fact-finding exercise. This includes them as part of a resource not a target. They need to feel part of your practice, not an object of it. I won’t detail a questionnaire here. Rather I will present a way to capture the data and knowledge.

Capture some demographic data including resources patients use or trust in learning about diabetes. (All within HIPPA guidelines) But the key is to understand the knowledge and/or behavior these patients have in regard to diabetes. One tool are vignettes. Vignettes move the discussion from first person to third.

A vignette can be written similar to a case:

A 50-year-old neighbor comes to you and says he was just diagnosed with diabetes. He knows you have diabetes and respects your opinion. He is not sure he understands what he is suppose to about food and asks you what kinds of carbohydrates he should be eating?
Kidney beans
Potatoes
Carrots
Broccoli
What would you tell him?

In this way the patient is speaking to someone else and sharing their knowledge etc. in a non-judgmental environment. They become a resource and their answers are not about themselves. It is someone else. The fact is they will answer based on their knowledge and behavior. You’ve identified their knowledge without asking them what they know or don’t.

Without knowing where your patients reside in their understanding, knowledge, and behavior it is difficult to identify ways to close a healthcare gap in your practice that brings about beneficial health. It is far easier and more effective to create messages and tactics when you know why problems exist. If your needs assessment identified that a majority of this population was unsure of proper diet and they were active in some SM, holding monthly chats moderated by a nutritionist may change behavior. Needs assessment can make SM more efficient and productive.

I realize the time and effort to perform a needs assessment may be beyond the abilities of a busy practice. What I hope I’ve presented here is an opportunity to consider ways to improve outcomes at the practice level. Perhaps a number of practices or systems can join together to perform a larger needs assessment in order to share data that will change patient care.

In the end what I believe we need to do in HCSM is bring tools that are proven in learning to patients and practices. Until we examine educational needs of patients and measure outcomes throwing tactics like social media at patients in a random fashion will not yield the results we are seeking. We need to be as deliberate as P&G in our efforts to understand patient knowledge, learning needs, and behavior in healthcare at the individual practice level. Healthcare is local and personal.

“Better health is not a science problem, it’s an information problem.”

I welcome your thoughts and ideas regarding needs assessments and outcomes for patients at a practice level.


Measure Twice, Tweet Once

February 1, 2011

I confess I’ve been the lagging indicator on this blog for any number of reasons. My goal was to post a multipart examination of how to measure outcomes in Social Media (SM). In my genius moment, I wanted to interview a number of experts in outcomes measurement, market research, and users who would share their knowledge and expertise. Two trusted colleagues took the time to respond to my questions and thoughts on outcomes and SM. This is a starting point for this discussion.

I do not view SM in and of itself as a major driver of change in healthcare (HC). It is a tactic, a tool, and one element of any number of strategies (e.g. marketing, sales, awareness, listening, etc.). In my estimation, SM is a powerful tactic within a learning strategy. Measuring outcomes in SM will aid in understanding what works, what doesn’t, and why. With that knowledge we will be able to create strategies that include targeted SM in HC to drive change through learning and application of knowledge. And further analysis of hard clinical outcomes can follow.

The best definition I could find on outcomes is from a statistical glossary:
“An outcome is the result of an experiment or other situation involving uncertainty. http://www.stats.gla.ac.uk/steps/glossary/probability.html.

We are uncertain what works in HCSM, the degree to which outcomes are a function of other variables, and why.

The two colleagues I asked to help me with outcomes are:

Derek Dietze is the founder and owner of Improve CME (www.improvecme.com). During the past 10 years Derek has focused on measuring outcomes in CME and finding unique ways to measure learning.

Scott Fishman is a well-regarded market researcher and principal of Ethos Lifescience Advisors (www.ethoslifescience.com), which supports market development in the life sciences, and provides guidance on the clinical and commercial value of new technologies.

Derek and Scott each looked at the topic in a slightly different fashion but overlapped in some critical areas. I will share their comments and thoughts before my own.

Derek offered the following regarding HCSM:

“For many years, we in the CME community have agonized about how to measure the effects of learning interventions on performance change in healthcare professionals and patient outcomes in practical, objective ways within reasonable budget limitations.

While methods and means to do this have come some distance, I’ve discovered that you really have to walk before you run with respect to measurement, both in an individual organizational sense, and in a community of practice sense. I’ve found it most productive to build on a strong foundation of simple measurement, easily understood by the consumers of the results, than advance to higher forms of measurement based on experiential learning. So initially, we focused on measuring changes in knowledge, confidence, and intention to change behavior (called “competence” by many in the CME community). These are still our staple forms of measurement, but now we have advanced to self-reported performance change and self-reported observations of patient outcomes based on CME activity participation. We are also piloting studies using national scope medical claims data to objectively measure performance change for national scope CME initiatives.

While ultimately the goal might be to measure how the use of SM results in better patient and community health, I would recommend starting at lower measurement levels, such as changes in knowledge, attitudes, confidence, and intention to change behavior among those interacting through SM. An article by Moore et al 2009 provides a good frame of reference for measuring changes in physicians and other healthcare professionals, and the Transtheoretical Model may prove to be of some help with respect to changes in patients.

Initially, I thought of SM as an “intervention” (like an educational intervention or activity in CME) when it’s focus is bringing about increases in knowledge, reshaped attitudes, and intention to change behavior. While I suppose it could be considered an intervention or “treatment” for the purposes of measurement, I realize it has many other functions that might be measured. SM seems to be a facilitator, and also has empathic and emotive characteristics, given its relative immediacy and potential frequency of use.”
A reasonable starting point for measuring the outcomes of social media (SM) in health care would be to clearly define:
• The different characteristics/uses of SM in healthcare
• What reasonably might be expected to change through its use in each of those circumstances
• In whom those changes are expected to occur, and
• What’s important about outcomes for the people/organizations invested in the results.

Scott Fishman responded to HCSM and some specific questions with this response:

I asked Scott:
Should our outcomes be qualitative or quantitative? Would you use combinations? Would we want to measure just clinical outcomes? His answer:

“Definitively both. Clinical outcomes measures are obvious and you’ll find them in any clinical paper or meta-analysis of a given condition. But there will also be references to “softer” metrics such as QOL scales, and I would suggest incorporating such measures. Of course, you will have to deal with the issue of generally accepted (e.g. “faces” pain scale) vs. novel metrics. The latter are also useful, but will need to be correlated with improvement in quantitative clinical and accepted QOL measures, which is another whole task in itself, and has the potential for either an “aha” moment or to entirely
undercut your hypotheses.”

Scott also addressed the health care provider (HCP). What would we measure there to determine outcomes in SM?

“Fewer phone calls from unsatisfied or frustrated patients. Shorter visits. Fewer changes in medication or dosages, less agita, fewer slaps from, and more incentives provided by insurers. Then, of course, there are all the “I’m a good doctor I have healthy patients” social acceptability measures.”

I asked him to address the question of what measures are most appropriate for patients?

Happiness. Does the patient feel better holistically? Do we see improvements on ADL scales? Of course we can measure condition-dependent clinical improvement (e.g. Hemoglobin A1c, BP, memory performance, and health). Are patients satisfied with their health care provider? Change in the number of days of lost work. Hospital admissions.
I might also include the quality and content of communications between HCP and patient as a potentially valuable measure for the effect of SM on outcomes.”

Both Scott and Derek have started the discussion that I would like to continue with you.

In healthcare SM’s most powerful application is as part of a learning strategy. HC is driven by knowledge and application of knowledge to improve an outcome. Knowledge is the locus for medicine. The physician is an intermediary in knowledge and treatment. Add to that these evidence-based conclusions about learning:

• Adults want to learn solutions to problems they already have (and, conversely, they seldom learn solutions to problems they do not have),
• Adults want to participate in their own learning, and
• Instruction for adults must respect the multiple demands in their lives.

Derek added the following comment:
“Mark, these measure a patient’s PERCEPTION of their own knowledge level and how it might have changed, which I admit may be valuable. However, when measuring physicians, I don’t trust them to self-evaluation whether they are knowledgeable. Instead I ask knowledge questions to test their knowledge. Anyone of use may be confidently misinformed or have incorrect perceptions regarding our illness/disease. A really simple way to validate correct knowledge (without making the patient feel like they are being tested), is to use “clinical assertion” agreement scale questions. Make a correct statement about a disease or condition, then ask for their level of agreement with the statement using a Likert scale or semantic differential.”

If we accept the fact HCSM is first and foremost a learning tool I believe Derek has presented a way to begin to understand HCSM strength and its potential. We can observe what happens to those patients engaged in SM with a HCP or others. Has the patient (caregiver)/learner: improved/increased knowledge, gained confidence, and intention to change behavior.
Patients get ill, get a diagnosis, and want to avoid an illness*. All of these are triggers to begin a process of learning. They come into the moment with a specific set of information. Patients will surf, call, read, tweet, FB and more. At some point they either stop adding to their personal compendium of knowledge because they have changed or are satisfied they have the knowledge they need. They have closed a personal knowledge gap. If we can measure changes in that gap comparing those who use social media against those who don’t in HC we can begin to understand SM as a learning tool and its value. We can compare it to non SM learning.

Areas of inquiry we may ask patients, caregiver, and HCP using SM in HC are:
• What is their current level of knowledge regarding the illness/dx/treatment you are seeking information on?
• Has their knowledge or understanding changed?
• Which formal and informal information of the following sources provided the greatest knowledge to them? (e.g. web sites, physicians, friends, others with similar conditions, networks on FB, tweeting, chat rooms)
• Based on what they have learned, how are they changing their behavior and/or approach to your care and management? What actually happens when we measure longitudinally from intent to behavior?

This is not an exhaustive analysis of HCSM and outcomes. It is a starting point to an open source discussion. What are your thoughts on how to measure outcomes in SM? Can we determine its relative value within HC? Are strict clinical outcomes the only measure we should make? This is one hypothesis on SMHC and outcomes. How can we dive into this area and improve it?

*I am fascinated by the idea that those patients who are heavy users of HCSM represent a small subset of all patients and are patients who are pre-disposed to learning etc.


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

November 18, 2010

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

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

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

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

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

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

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

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

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

@marksphone


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

November 12, 2010

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

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

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

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

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

@marksphone


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: http://tiny.cc/hkoi2.

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 (http://bit.ly/c1YSIr) 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 http://tiny.cc/rhkmj0y4oz ). 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 http://tiny.cc/e0e0m). “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 (http://tiny.cc/dygu6):
• 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.


SM in HC is More Than a Cute Screen Name

September 27, 2010

Last Sunday in the NYT Natasha Singer published an article titled ‘Better Health, With a Little Help from Our Friends’ http://tiny.cc/08b72 She presented compelling information that social networks can aid in influencing and changing healthcare behavior for both good and bad. As I read and reread that article I was struck by the implications of the research she presented for SM and how it may be applied locally to improve outcomes. I want to look at some of the data supporting her writing and what it may mean for SM in HC.

The work Singer presented was focused on live networks of people and communities and their effect on HC behaviors. A NEJM of article by Fowler and Christakis titled ‘The Spread of Obesity in a Large Social Network over 32 Years’ http://tiny.cc/j5b02 “the chance of becoming obese was influenced not only by the weight gain of friends but also by friends of friends who gained weight.” In this article Fowler and Christakis said, “People are connected, and so their health is connected.” This is the key to improving outcomes in HC. Can we create hubs of influence where patients congregate to find solutions to their common HC problems?

During chats and posts of HCSM the primary premise is SM is an answer to HC that can drive change. But it is not simply establishing networks and SM. It is the way the network is structured, who is in it, how it functions, and what it does to reinforce change. I have a strong bias toward adult learning in that adults want to find solutions to problems they are having and that learning has two fundamental aspects for it to be successful. It must have affect and must be social. I have posted on this. In my mind the Singer article demonstrated tools that can be applied to SM in HC in order to increase the effectiveness of learning, which will improve outcomes.

Singer presented recent work by Damon Centola who examined the structure of social networks and how fast people adopt and stick to health habits. His work is summed up in this quote from Singers article “It makes a big difference how you connect people than who is there in influencing desirable behaviors. His recent article in Science ‘The Spread of Behavior in an Online Social Network Experiment’ http://tiny.cc/hqqg4 examined this issue. It is a very technical read and built on his earlier work “Complex Contagion and the Weakness of Long Ties” AJS 113 No. 3 November 2007 702-34.

Singer examines ties within networks and how they influence participants. Strong ties are close friends and family who are highly important to us, family, friends, our PCP who we are seeing to manage our health. Weak ties (long ties) are those we are connected with less frequently and do not highly influence us. Lady Gaga’s 6 million friends on FB is an example of weak (long) ties. Strong ties (wide bridges) influence more powerfully. Weak ties offer the ability to rapidly spread information.

I want to quote from Centola’s conclusion, “We found that long ties do not always facilitate the spread of complex contagions and can even preclude diffusion entirely if nodes have too few common neighbors to provide multiple sources of confirmation or reinforcement. While networks with long, narrow bridges are useful for spreading information about an innovation or social movement, too much randomness can be inefficient for spreading the social reinforcement necessary to act on that information, especially as thresholds increase or connectedness declines.”

How does this work apply to HC outcomes and SM? What are the practical applications relevant to our #HCSM chats and our collective interest?

First there are two assumptions I want to make:
•What is presented will be within HIPAA guidelines.
•The work to do this does not fall on the physicians shoulders but is done via an outsourced model that is at worst revenue neutral but hopefully positive.

HC is Local: There are 900 million physician office visits each year compared to 35 million hospital admissions/visits. HC is in the office not in the hospital. Hospitals treat patients, physicians manage patients. It stands to reason the key locus for patients and outcomes is the office.

When adults seek solutions to HC problems they go to Bing, Google, WebMD, national organizations, their friends, etc. I would offer a different model, MyMD.com, a PCP web site/portal built to focus the physicians’ patients to find information and links. It is a place for patients to go that is trusted. It’s local with high HC value. (Who is more trusted than your MD?) The physician and the web site/portal become a hub for patients in search of information. These are not huge sites like WebMD but sites with links and basic trusted information and articles built around patient/practice demographics. MyMD is local, patients are local, it’s a HC neighborhood that can reinforce knowledge and outcomes.

Networks: Use the MyMD web site /portal as a place where patients with similar diseases (HTN, diabetes, obesity, etc.) can build small communities around their PCP. Offer Tweet ups for patients with similar issues. Allow them to meet and chat based on the articles and thoughts of their PCP. Again, to be clear, this is not a place to treat and Rx. It is a place to learn and share with clear rules of engagement. Knowledge coalesces around their physician.

Maximize diffusion: Using the work cited above create wide and long ties. Invite patients from national organizations to participate in order to diffuse new knowledge quickly. Include trusted patients and experts who would offer wide ties of influence. Create discussions around problems patients want to solve and ask them to share experiences and knowledge in order to create reflection.

Larger portals: Carmen presented a review and look at the Mayo Clinic patient portal ‘Patient Portals: Socially Wired to Future Health Care. Tie patients back to their hospital based patient portal if it exists.

Measure and Monitor: Examine the actions and behavior of patients participating in the local PCP knowledge portals. Learn what problems patients within the practice are seeking solutions in order to offer ideas and knowledge and most of all allow them to share experiences and knowledge in order to reflect and include new behaviors in their HC lives. And most of all look to measure outcomes and identify change.

Hospital Benefits: Hospitals have a vested interest in improving outcomes at the referring physician’s office. In the not to distant future as HC reform takes hold hospitals will be measured on outcomes. X number of patients enter the hospital each year. As an administrator I am hoping to get them in, treat, discharge quickly and have no readmission. Therefore, I want patients admitted in a better state of health. I want diabetic ulcers not gangrene. The latter may be more expensive but effect’s my outcomes. MyMD web site/portal is a way for me to help referring physicians better serve hospital goals.

Revenue: Perhaps a local bike shop would want to place an ad on the site. Maybe Trek would want to been seen here. What should not be done is have pharma or others with a commercial interest in HC products participate. This cannot work without some revenue.

These are just a few ideas on taking the work presented above and applying it to real world practice to improve HC outcomes. MyMD site/portal does not have to be complex. It needs to be a place, a waiting room with information and like-minded friends both old and new who share knowledge and help each other to learn and make the changes they want to make within their ‘HC neighborhood’. Most of those 900 million patient visits last year were for check ups and routine healthcare and those visits are not driven by problems that need solutions. Therefore the audience using this MyMD web/portal is smaller and wants and needs to make changes. They may or may not be motivated but from the data it seems we can use networks and social media to drive change. But what we cannot do and what frosts my ass is this assumption that the pretty little toy called SM will in and of itself drive HC change or improve outcomes or make coffee and cure acne. SM is a tactic; it needs a strategy and principles in order to succeed. There appear to be hundreds of research papers examining networks and how they function. Apply them to SM.

I am a GED in a roomful of PhDs who dares to quote Centola, Fowler, and Christakis. I worry my logic may be ill and I’ve misunderstood their work but I think I’ve got the idea right. We need to use science and knowledge in SM to drive change. My hope is that comments, questions, and interest will spur discussion. Bless Steve Jobs’ rented liver. iTunes and now iPing are interesting models of knowledge and SM. Maybe just maybe we’ll interest someone, some HC provider, etc. to build this as a model and test it. I know I’m ready.


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