Originally posted on the Mayo Clinic Center for Social Media, January 9, 2012

Humanism in medicine has not flourished in the last century to keep up with scientific advances that leave us perplexed and sometimes wounded.  By moving back toward the connectedness between health care providers and patients that existed before, we can close that schism for a more integrated approach to our health.

Connectedness means that we are all “in one piece” in mathematics.  It’s a little fuzzier in real life, but when I shake hands with a patient, at a subatomic level parts move between us – literally sharing a little bit of ourselves.  Figuratively, we are not separate, but connected by relationships with the potential for either healing or harm.

As I mentioned in my last post, with the tremendous successes of the scientific method we have forgotten the kind of connectedness we once knew before.  Medicine 4.0 is tilted more heavily toward knowledge and expertise than caring.  This philosophical approach tends to favor treatment over healing, dispassionate assessments to try to make medicine more scientific.

But at its core, medicine is a social science.  We all suffer, and at different times we are either helping others suffering or seeking the relief of our own pain.  Suffering is an integral part of life, and each of us can serve as healers.  That relatedness makes it impossible to be truly objective.  The humanistic aspects should be represented as an equally important part of the whole.

My ability to help patients make the right health choices hinges critically on communication and an ethical approach to care.  I have learned a tremendous amount from both my patients and from my interactions in social media with others that care about healthcare.  Connectedness has made me a better doctor by trying to be a decent human being first.

Integrity is another critical factor for Medicine 5.0 in my mind.  Too often, the procedures to diagnosis and treat us can make us feel less than we are.  This may be true literally (mastectomy or amputation) or a doctor or the healthcare system itself may make us feel that way.  On a spiritual level, we can remain whole even in the face of illness and death.  Some may not feel comfortable with this interpretation, but to many it is an essential part of life and death.

Integrity is also important because it embodies the importance of several other features relevant to how we interact in medicine:  honesty, transparency of intent, and a willingness to change based upon what life throws at us.  This applies both whether I’m the doctor or a patient, each role with different responsibilities.  Combining integrity and connectedness back into healthcare can return much of what we’ve lost.


If we re-embrace the power of our interactions as a healer-wounded connected entity, I believe medicine will evolve into something better.  Creating an ethos based upon autonomy, beneficence and justice is good, but I think adding connectedness and integrity will revitalize us and improve our health.

Originally posted on the Mayo Clinic Center for Social Media, December 5, 2011
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Medicine 2.0 may have a catchy jingle, it's simply wrong.  Medicine has ancient roots.  If we are going to really look at how to evolve healthcare, we should look beyond the last forty years.  Let's go back thousands to get a more compete perspective.
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​1.0:  Shaman

Originally posted on the Mayo Clinic Center for Social Media, November 23, 2011

Can doctors and other healthcare professionals adapt to connected world around them?  If we look at other periods of dramatic change, medicine has thrived.
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Let’s step back 160 years to the mid to late 19th century:

In that short time period, new scientific discoveries changed how we look at health and how we treat it.  It took until the early 1900s to crystallize a model in the U.S., the Flexner Report, but that approach to medical education for doctors helped guide the profession to many successes in the 20th century.
There are new challenges, and how healthcare professionals interact is one of them.  Early research shows that medical professionals are currently struggling to integrate social media use with the standards of medical professionalism.1-3    Guidelines are now available from multiple organizations, and Dr. Mark Ryan has a good review of this topic here.
It's still unclear how to strike the right balance between openness and tradiational medical professionalism.  But I am confident that we will find ways to adapt because we must – necessity is the mother of reinvention.  Perhaps not all social media tools will be helpful, but I think doctors and other medical professionals will evolve to remain relevant.  What do you think?
 Citations
1 Chretien KC et al., “Online posting of unprofessional content by medical students”, JAMA 2009;302:1309-15
2 Thompson LA et al., “The intersection of online social networking with medical professionalism”, J Gen Intern Med 2008;23:954-7
3 Lagu T et al., “Content of weblogs written by health professionals”, J Gen Intern Med 2008;23:1642-6

The promise of health-oriented social networks is to empower people and improve their health. PatientsLikeMe, an early leader in this field, also allows paying customers to learn from members’ online interactions. But it goes a step further by conducting its own human subjects research using the health information its members share.
In addition to allowing others to pay for data access, PatientsLikeMe has published research of its community in peer-reviewed journals. But it does not appear to use any institutional review board (IRB) or external review, as medical researchers do. Here are my findings from reviewing the full text articles (hyperlinks to abstracts):
1. ALS patients request more information about cognitive symptoms. Eur J Neurol 2008 May;15(5):497-500. “Participants were invited to take part in accordance with the principles of the Declaration of Helsinki.” No comment on IRB exemption or review.
2. Measuring function in advanced ALS: validation of ALSFRS-EX extension items. Eur J Neurol 2009 Mar;16(3):353-9. No comment on IRB exemption or review. Consulted PatientsLikeMe community member with ALS, C. Wolf, a study co-author.
3. Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another's data. J Med Internet Res 2008 May 27;10(3):e15. No comment on IRB exemption or review.
4. Sharing health data for better outcomes on PatientsLikeMe. J Med Internet Res 2010 Jun 14;12(2):e19.
“As an internal research project without external sponsors, and with no anticipated adverse consequences for participation, institutional review board (IRB) approval was not sought for this project.”
“User data was protected in accordance with PatientsLikeMe’s internal security standard operating procedures, which include password protection, deidentification of locally held data files, regular automated backup, and physical protection of IT hardware.”
5. Patient-reported outcomes as a source of evidence in off-label prescribing: analysis of data from PatientsLikeMe. J Med Internet Res 2011 Jan 21;13(1):e6. No comment on IRB exemption or review.
6. Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nat Biotechnol 2011 May;29(5):411-4. No comment on IRB exemption or review in article or online supplemental materials.
7. Use of an online community to develop patient-reported outcome instruments: the Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ). J Med Internet Res 2011 Jan 24;13(1):e12.
Finally, IRB review. But… “The study was approved by Western Institution Review Board (WIRB), Olympia, WA, USA (Study 1111772). Patients gave informed consent electronically. Members of PatientsLikeMe join the site with the expectation that they will be participating in research.”
I’ve always applied for IRB approval or exemption in research involving patients. This process ensures that medical research is ethical, prioritizes safety, and provides transparency. Perhaps some of the studies did use an IRB process that wasn’t published in the article, but it should raise a red flag for the peer review process by these journals. They are responsible for allowing the research to be published. To improve transparency, all manuscripts should explicitly state whether IRB review or exemption occurred.
PatientsLikeMe is an outlier because it overtly embraces the belief that its community members expect to be research subjects. But many health-oriented social networks sell data about us. You can argue that the process of conducting research can be streamlined, but we should understand that the information we share online can be sold to researchers and businesses. And the research results of their studies may not be shared with us at all. Like in the Tuskegee Study, discoveries could be kept secret to benefit researchers or industry and potentially harm patients.
I would suggest that the Belmont Report, a cornerstone of ethical medical research, applies to social networks involved in data mining patient health information as a business model. Health-oriented social networks don’t have enough of a track record or enough transparency to convince me that these platforms for sharing information are safe, effective and minimize the risk of harm.
What do you think?

Originally posted on the Mayo Clinic Center for Social Media, August 18, 2011
Finding the opportunities and risks of social media requires a willingness to question what we know.   I find myself perplexed on how best to use social media effectively, and conversations online suggest that I am not alone. I would like to take a broad view and try to re-frame how we determine whether these technologies are good for our health.
To answer some of the questions I raised already, I have five themes that I propose can guide us:
1.   Social media makes our interactions in healthcare more perplexing. Increasing patient empowerment, problems with medical professionalism and shifting relationships within healthcare create uncertainty.  Social media has the potential to make our interactions more or less healthy but may differ for each disease, person, or online environment.
2.   The concept of “Health 2.0” is too narrow. This is not the first transformation of medicine; adopting internet jargon has a catchy jingle but is inaccurate. A broader historical perspective can help us understand how our current situation is similar or different to past major changes in medicine.
3.    Embracing uncertainty in medicine can improve our health. Medicine has relied on a positivist philosophy, assuming everything can be objectively known.  This approach does not reflect our actual experience in healthcare.  I plan to discuss how heuristics, communication and understanding risk can improve our relationships and decision-making about health.  I believe it provides doctors an opportunity to redefine their role in the future of healthcare.
4.    An ethics-based approach centered on the healer-wounded dyad can help us redefine health. There is a moral component to medicine that has been diminished for too long by the successes and limitations of the scientific method.  I want to explore how social media both changes and fits into an ethical, humanistic model of health that places healing relationships at its core.  And it’s not just about the patient, or the doctor, or any one person – it’s also about we interact in health decisions and experiences.
5.   Social media should complement and enhance human interactions, not replace or degrade them. We may find areas where these technologies are not healthy.  If so, then we have an opportunity to avoid harm both within medicine and society at large.
I may vary in how we discuss these subjects, based upon what crystallizes enough to write about, your comments and current topics that may arise.  I don’t presume to think that my approximations will be entirely correct, only that with careful thought I can help improve upon our current state of uncertainty. I do think it will help lessen the risk of a negative Black Swan -- that our connectedness online may hurt us in real life.
By appreciating how we interact best to heal in analog and digital milieux, I hope that together we can better guide ourselves, the perplexed, on a more perfect path to health and meaningful lives.

Originally posted on the Mayo Clinic Center for Social Media, August 11, 2011
Recent data from Pew Research show that 59% of U.S. adults go online on for health information on 15 health topics surveyed.  Clearly, many of us find valuable information about health online.  But if a key goal of medicine is to avoid harm, then Nassim Nicholas Taleb’s concept of the Black Swan may be helpful to consider how social media may affect our health.
Many recognize that social media is changing how we interact, but does that mean we know where it’s taking us, or what risks or benefits it may bring?  The concept of the Black Swan is that it is an event, or sequence of events, that is an “outlier outside the realm of regular expectations…carries extreme impact…[and] human nature makes us create explanations after the fact to make it explainable and predictable” (page xxii of 2nd edition paperback).
How does this apply to our health?  Social media encompasses many varied communication technologies:  blogs, wikis, social networks, and others.  Each medium has certain facets that distinguish them, but each allow creation of user-generated content and can:

1. Lower or eliminate barriers to communication;
2. Be easily used without computer expertise;
3. Permit global access and dissemination immediately to other users.

Black swans are more likely to occur in more connected, scalable environments. And social media has connected many of us very rapidly, leaving little time for reflection about how social networks, microblogging or online marketing influences our decision-making processes and our health.
What makes social media’s key features both promising and potentially dangerously exposed to Black Swans:

1. Some forms of communication can be detrimental to our health (e.g. cyberbullying, sharing misinformation);
2. Increased ease of use means more increased exposure to multiple sources of harm or benefit (e.g. privacy violations, online support groups);
3. Because scalable mistakes that affect our health can create effects on a global level, not just in individual interactions or within a single health care system.
4. Immediate dissemination of content and propagation by other users creates the potential for higher impact rare events.

This is particularly important in health care, where there is a great deal of uncertainty, variability, and complexity. And Taleb cautions, “we overestimate what we know, and underestimate uncertainty, by compressing the range of possible uncertain states.” (p.140)
From my perspective, social media are tools -- that’s it.  Technology provides us tools or methods, literally meaning the study of art, skill or craft.  Technology is used for a purpose but is not an end unto itself.  Within health care, social media tools should be evaluated critically, no differently than others we use to improve our health.   Does surgery, radiation or chemotherapy work for cancer?  It depends but has been carefully studied.  Why should we expect any less with social media if it to be taken seriously and used effectively?
And why should we risk only seeing the obvious after a potentially avoidable problem with social media has occurred?  If we can find the negative Black Swans and eliminate or lessen the risk, then it allows the better aspects of social media to flourish in health care and help more people.  If a major fiasco occurs and social media is blamed, a backlash against its use may delay a lot of the benefits it can bring.
In my next post, I’ll touch on some of the areas that I think we need to explore to hunt for potential Black Swans, as well as how to better decide how social media fits into health care.

Originally posted on Mayo Clinic Center for Social Media on August 4, 2011
 
Before I try to answer some of the questions I raised in my first post, let’s first establish the position from which I’m starting the conversation about the changing nature of health care.   So here it is:
Life is an uncertain endeavor.  When our health and lives are at risk, uncertainty is a part of illness and healing.
Episodically as a patient or caregiver, and daily as a radiation oncologist, I am witness to how people make decisions about their health.  Through medical school, residency and clinical practice I’ve also learned some from the good and bad aspects of medical training.  Sometimes risk and uncertainty are all too starkly clear, but not always.  Consciously or not, we can make decisions that affect our health.
Understanding risk and uncertainty is not easy, and explaining it can be even harder.  Even for the same illness, the way I interact with each person I see depend upon the ability to understand how the disease fits into his or her perspective.  At its core, this is what medicine is about – navigating uncertainty in the best way possible to maintain health and dignity.
While I’ll try to address more complex issues in later posts, I believe the starting point has to be the therapeutic relationship between healer and the wounded.  I use these terms rather than doctor-patient relationship because it is too confining, both historically and in the current scope of medicine.  Looking to the future, I think it is inevitable that new communication technologies affect our health.  But will it be for good or ill?
That, too, is uncertain.

Originally Posted on Mayo Clinic Center for Social Media, July 21,2011
I’ve been a social media enthusiast for some time and see great potential for communication technologies to improve health and medicine.  As a doctor, I’ve begun to explore how to use it professionally.  But after witnessing enough scandals over the last year or so, I have reluctantly started to consider whether social media may do as much harm as good for our health.
Social media is not going away, and it is changing how we interact.  I started out researching the topic with plans to write a review article.  But several nagging questions arose with these technologies related to healthcare:

• Are privacy violations online detrimental to our health?
• Do increasingly sophisticated marketing unduly influence health-related decision-making?
• Do hospitals providing social media resources balance patient benefit with self-interest?
• By lowering the barriers to sharing, are some unhealthy practices or opinions making it harder for providers to help patients?
• Why are physicians and other healthcare providers less involved online, where people are increasingly looking for answers about health?

My purpose in raising these questions is to avoid disastrous use of new technologies we’re only beginning to understand – first, do no harm.  As we become more interconnected and our health is affected by online activity, the potential for harm may become scalable and a potentially avoidable Black Swan may emerge.  By discussing what we don't know, I hope to make the transition into digital medicine less harmful for both patients, clinicians, and others in healthcare.
I do not expect to find definitive answers, but I do want to explore these topics as serious issues and try to develop working solutions to further tweak.  Each question deserves its own discussion, and I plan to do so in future posts.  If you have others you want to share, or you want to add to mine, let me know and we can add them to my list.  Good questions are the best starting point for dealing with uncertainty.