“Contagious” is an interesting word, especially when used outside the world of health care, carrying both positive and negative connotations, such as, “her laughter was contagious” or “a financial contagion has hit the markets.”
Of course, within health care “contagious” almost always has negative connotations – “that strain of flu is rather contagious” or “ebola hemorrhagic fever is highly contagious and kills approximately 50 to 90 percent of all people infected." There was even a recent study published by NEJM showing that obesity within social networks is contagious. The social network map that accompanied the study is literally covered with dozens of interconnected, rather plump yellow dots. The skinny dots wedged in-between were apparently feeling a lot of social pressure to eat a second or third doughnut!
Nicholas Christakis and James Fowler who conducted the obesity research noted that “we find that a person’s chances of becoming obese increase by 57% if they have a friend who becomes obese, 40% if they have a sibling who becomes obese, and 37% if a spouse becomes obese.”
Unfortunately, their related research showing healthy behaviors within social networks are also contagious has received much less media attention. In analyzing the Framingham cohort for smoking cessation, they noticed some remarkable trends:
…there appear to have been local smoking-cessation cascades, since whole connected clusters within the social network stopped smoking roughly in concert. This finding suggests that decisions to quit smoking are not made solely by isolated persons, but rather they reflect choices made by groups of people connected to each other both directly and indirectly at up to three degrees of separation. People appeared to act under collective pressures within niches in the network.
As Wendy Everett at NEHI and many others across the political spectrum begin to imagine a health care system based on preventative measures, the implications of contagious healthy behavior in a highly networked society are nothing short of profound, especially with regards to the management of chronic illness:
A recent Milken Institute study found that in 2003, chronic care cost the country $277 billion for treatment and another $1 trillion in lost worker productivity. If nothing is done to halt the rise of chronic illness, the Milken Institute projects that treatment and lost economic output will rise to $4.2 trillion by 2023.
The Pew Foundation has found that patients with chronic illness – while somewhat behind the curve in terms of internet adoption – are highly networked and health-focused once they do go online. Furthermore, they are more likely to act based upon information they find online when compared with non-chronic patients. Essentially, chronic patients online – whether they are gathering at broad patient communities such as PatientsLikeMe or Trusera, or at more disease-specific communities such as Oncochat or RealMentalHealth – appear to be exhibiting what futurist Mark Pesce describes as “hypermimesis” – a condition when learning travels through a pervasive electronic network at incredible speed (mimesis is learning by imitation).
As these networks grow larger and are amplified by always-on, searchable mobile technology, Pesce maintains that powerful emergent forces are unleashed that fundamentally challenge the status quo:
All institutions are feeling the strain of informational overload. More than that, they’re now suffering the death of a thousand cuts, as the various polities serviced by each of these institutions actually outperform them.
You walk into your doctor’s office knowing more about your condition than your doctor. You understand the implications of your contract better than your lawyer. You know more about a subject than your instructor. That’s just the way it is, in the era of hyperconnectivity.
So, hyperconnected patients are clearly gathering together online with greater and greater frequency and learning from each other in ways we are only just beginning to understand and appreciate. But – what are these patients learning from each other?
The critical question to address as Web 2.0 technologies impact the healthcare space is: how do we create powerful online networks for chronic patients that are focused on wellness and healing (thereby creating contagious, more positive health outcomes) vs. just gathering crowds of “whiners” around a particular disease state?
With this question in mind, a few key guidelines are important to consider:
- Online health communities need to focus on healthy behaviors
- Patients with chronic illness initially find support and comfort in realizing that many other people share their pain and discomfort, but ultimately the community needs to be structured as a journey towards health and healing – not a celebration of the disease state itself.
- Patients learn from one another, so get out of the way and let that happen
- PCPs, specialists, key-opinion leaders, associations, pharmaceutical firms, etc. all have an important role in providing information to patients, but ultimately patients will listen most closely to what other patients have to say. This means the tools, interface, and the core design of the community itself all need to revolve around patient-to-patient interactions.
- Healthy caregivers need to be invited and welcomed into the mix
- Paradoxically, while the site needs to revolve around patient-to-patient interactions, social network research has shown 100% patient-to-patient communications are not going to maximize health outcomes. Thus, a diverse mix of healthy caregivers, survivors, and other outsiders need to be included in the network structure if the overall journey towards to healing is to move forward.
In conclusion, the challenges of chronic disease management may look like a monolithic nightmare of exploding costs driven by a growing wave of aging, dependent patients; but, as we have seen, in light of hypermimesis and the contagious healing potential of niche online social networks, a much different and more encouraging picture starts to emerge.
In fact, when carefully examining these trends, it is not altogether impossible to imagine a contagious outbreak of healthy behavior sweeping across the nation. Who knows – when the financial contagion is over, and the market finally starts to rebound, it might just be Whole Foods and Nike leading the way for a healthier, more networked, and trimmer nation.
Jim Walker is Director of Emerging Media for Cadient Group, an interactive health care marketing agency located in Philadelphia, PA.
Categories: Uncategorized
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
As a patient living with a chronic illness, I often wonder if the health 2.0 policy wonks REALLY know what is going on in these niche social networks. Are the patients being consulted or just the founders/owners of these sites?
For instance, is it known that members of PatientsLikeMe are not completing and maintaining their treatment/symptom charts? Or, rather than provide reliable information and support, patients are attacking and verbally abusing others who think differently than ‘the in-crowd’ and causing new members to hightail it out of there. Sad part is that Admin and moderators deny repeated requests to shut down the offense threads.
But that’s not the story which founders want to share with others in the Health 2.0 arena. How will this type of environment change health outcomes for the positive? I think that there is much to be done in creating more effective communities to address chronic illness.
This opinion comes from a patient who has interacted on a few health-related websites, who writes for one and provides information and support, while also watching the development of Health 2.0 endeavors with great interest.
So the influences are: friends, siblings, spouses.
I would have thought spouses, who you often spend more time with and eat with would have been the most important factors.
From a reality standpoint, I find it’s the beanpole skinnies who are trying to force another donut (or, for the last bunch of years after I gave up such things through sheer willpower, ANY donut, or birthday cake, or pizza slice) upon me. And insisting. And insisting.
I’d like to study THAT peer pressure.
Jim, this is a fascinating view of the positive potential of networking to impact on people living with chronic conditions. I note particularly your cautions: the need to focus on healthy behaviors; enabling people (patients, consumers) to learn from each other; and the integration of experts (doctors, other professionals) to help direct the movement. What are the best examples of this to date? I see your work is mostly with pharmaceutical companies: do you think other industries are ready to support this trend?
Finally, based on my own observations in chronic disease (diabetes, sleep apnea, COPD) I have been seeking models that would work. I’d like to believe your ideas can be a useful direction. From what I see currently (Connected Health Seminar), the models for healthcare and wellness are divided between the use of technology to support a distance model of doctor-patient; and a mass market approach to connect with consumers. “Connections for Better Health” at http://photoluminations.com/drupal/node/40