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4. Thank you for this interesting discussion.

   One of the larger questions which the US is going through as we consider how best to implement Meaningful Use mandates, is this –

   Is it possible for the definition of privacy to change so as to create a world in which an individual is not so stigmatized for their medical condition?

   Many of us were around at a time when things like President Kennedy’s Catholicism, Aunt Sharon’s drinking, or (now) Chris’ HIV+ were whispered about. The patient and family education components of Meaningful Use are encouraging caregivers to educate patients and family members on how to mitigate patient conditions (such as drinking or smoking) that have impacts on patient wellness.

   We’ve seen over the past few decades drinking come increasingly out of the closet as the population becomes more aware of the fact that we all benefit from applying interventions to those that could use it.

   We have seen AIDS bring a chronic condition and along with it discussions on sexuality increasingly into the public arena.

   I am not suggesting that moving discussions to patient care on publicly accessible social media is going to start tomorrow and will cure everything. I am only suggesting that it is time to start the discussion of can the social good encourage individuals to create an environment in which the population can accept increasing openness on one’s personal health situation. Here in the US we’ve seen these discussions and social change happen from dark secrets to increasing sunlight in race, drug use and abuse, and sexuality among other areas?

   Is acceptance of medical condition with the linked mandate to improve said condition the next frontier in socially accepted conversation topics?

   Bernard Hayes

5. Vince, thanks for launching this discussion.

   To answer your question, I first must disagree with your premise. Our objective should be better care at lower cost. Thus, I see coordination of care as but one means to meet those objectives. Another is simply to give a physician access to enough information known about the patient that he or she, acting independently, can provide the appropriate treatment and care.

   Once we accomplish this, we will have taken the first step towards better care coordination. Each doctor will be able to see what other doctors are doing or have done to treat their patient — and they can act accordingly.

   We then can broaden out to facilitate the timely sharing of new records among providers treating a patient, such as all the docs who treat a patient for diabetes. This can involve using phone calls, e-mails, social networks, or any other mechanism that helps improve care and lower costs.

   In short, my solution is to take one step at a time — starting with what we can do immediately. First, aggregate a patient’s medical records and history in a form and format that is doable, works and financially self-sustaining. We can do that now. Then, in as many steps as necessary, broaden how these records can be accessed and shared by care providers — individually and/or by groups to improve care, avoid mistakes and preclude unnecessary tests.

   And, yes, the flash drive is not the end-all. It is merely a part of a system that accomplishes much more, such as integrating with whatever record systems care providers use, meeting public health needs, etc. Such a system must be easy to use for everyone involved, and meet their respective needs. Tall order? Yes. Doable? Yes.

6. Really good discussion…very much in the spirit intended in my post. At this point the value is in raising the questions, not in leaping to premature or kneejerk conclusions.

   KG14: you write “My vote is for a social network type site due to both the ubiquitous nature of presence and acceptance as well as the unintended encounters and reminders of care that will occur.”

   Great point…

   Merle Bushkin: thanks for laying out counterarguments to objections about flashdrive. I’m presuming you see a flashdrive as a PART of a broader care coordination solution, not a universal solution? What are other leverage points?

   Ian McNicoll: Can you pls. share more about Scottish experience? Lessons learned? Is there a URL or summary somewhere? Also really like your suggestion of “
   Facebook-like interface to a combined EHR/PHR application.”

   Peter Millington: you raise many valid barriers to use of FB or other existing social networking technology for care coordination. Won’t these issues have to be addressed in any care coordination platform connecting patients and care providers? i.e., yes, these are issues, let’s start discussing how to address them.

   All: One issue not addressed is value-add of existing network of users brought by Facebook – not easy to get past tipping point and create network effects. For example, GoogleWave had potential for similar care coordination usage but never got off the ground.

   My personal vision here is that network effects for care coordination most likely to be created on regional platforms, not national or international platforms.

7. KG14, there are simple solutions to the potential problems you cite, and some of the other points you raise are straw men.

   or example, if you put the application to manage a patient’s aggregated medical records on the drive with the patient’s data, the problem you raise disappears.

   Similarly, the probability of having your patient-controlled drive breached or stolen is far less than having your records stolen via an Internet breach.

   And if you carry the drive on your key chain or in your wallet or purse, the probability you won’t have it with you when you see a doctor is pretty small. How often have you lost your keys or gone out without your keys or wallet? Probably far fewer times than you have experienced a power outage or network failure that knock out your Internet connection!

   Peter, viruses and malware, indeed, are real concerns. But what if care providers and patients each had something like Norton Antivirus and Malware on their computers that quarantine suspicious applications and files? Each would be protected from viruses or malware that the other might have on their computer. This certainly would be safer than accessing records over the Internet — where viruses and malware abound!

   On the issue of care coordination, I agree with both of you that more is needed than merely having a patient’s aggregated medical record available to a care provider.

   However, you have to start somewhere and today, a patient’s aggregated records aren’t available anywhere — so shouldn’t we solve this problem first?

   We can do that now without having every provider install an EMR system. So shouldn’t we do it now so providers can easily access a patient’s complete record now, and if they have a question about another provider’s diagnosis or treatment plan, they can call or e-mail them? Once we accomplish this, we can turn to fostering greater provider interaction.

8. Hi Peter,

   Absolutely agree with your comments regarding privacy. I am attracted by the Facebook paradigm but agree with Vince that Facebook itself or any other ‘open’ social network application is inappropriate.

   I was thinking much more in terms of a Facebook-like interface to a combined EHR/PHR application. It struck me that the structured conversational aspect adds something useful to this world.

9. The use of social networks informs the wrong audience when dealing with personal health data, even as little as listing data about referrals. The purpose of HIPAA is to keep patient data private which is the opposite goal of social networks. The privacy principle includes the “need to know” doctrine that would exclude ideas such as an “openEHR Foundation” or other restricted database within the patient care industry. Would patients have access to the database? Access to one’s own data is a primary HIPAA requirement.

   Patient knowledge, ability and desire to know the contents of their medical records should not be underestimated nor should the capabilities of their lawful agents. Further, what skills, professional experience and licensing would an EHR database manager require? Who would verify the lawful status of an attorney-in-fact for health care and enable access to the right patient’s records? How can the individual provider physician or organization protect oneself from HIPAA violation findings and concomitant fines? Sending data into a public social network cannot relieve the sender from liability for subsequent fraudulent use of that data by another, unknown user of that network.

   Facebook and similar, commercial social networks have accountability to their owners, not to their users’ overriding interests. For EHR databases, their limits should be the provider group or institution, with access permissions controlled by “need to know” for payers, patient-approved others including researchers. Inter-provider, secure communications can use existing technology. Many users of digital data will not use a patient-provided–or any other source’s–flash drive or disk because of the potential for transmitting harmware, commercial data collectors or other hazards to one’s database integrity.

   These are just some of the reasons for not considering Facebook or other social network for one’s operating platform. Invest in one that does not include the world.

10. Fascinating. 10 years ago I tried to set up some sort of ITC support for a Scottish community shared care project, involving mutliple agencies. We knew a ‘shared database’ would simply not work and recognised the value of asynchronous communication between very mobile staff. The project died as the basic infrastructure did not exist, but I still think the paradigm of ‘Structured conversation’ is correct, of course, now including patients and carers.

    Fast forward to the present and via LinkedIn I have been discussing the challenges of looking after patients who are on complex, multiple, often conflicting pathways and am doing some clinical modelling in this area for the openEHR Foundation. I only just ‘got’ Facebook and it suddenly struck me that it offers something a little different which might be very close to what is required in the care coordination area, and speaking as a patient, much closer to my needs than a static heath portal like Google Health or Healthvault.

    But let’s be clear, this needs actively managed, almost certainly by a professional, in concert with patient. This kind of stuff can get very complex and most patients will have neither the time or skill to manage this independently.

11. Flash drives or other hard copies of PHRs do appear promising, but what they lack is the open communication that may be provided by a forum such as a social network. In addition, hard copies of PHRs are subject to damage, loss and theft. Perhaps simply remembering to bring the flash drive to appts. undermines the purpose their existence. Clinical settings would need compatible software to access these records. I think the notion of care coordination surpasses the mere maintenance of information. It allows for more frequent communication among providers and between patient and provider . . .now billing on these communications, that is another story!

12. There is a simple, inexpensive solution to making a patient’s medical records available to all their care providers at the point of care so they can coordinate their patients’ care — all while protecting patient privacy and the security of their records.

    Give each patient copies of all their records aggregated on an encrypted flash drive that they own, control and is updated by their care providers. They give it to each care provider who, in turn, can sort, search and read its contents, as needed, to coordinate their care with the care provided by the patient’s other providers.

13. The use of (social) networking as a means of creating and coordinating care teams is intriguing. Quite obvious in the included quote by Zuckerberg is his dismissal of privacy related concerns. Facebook is out! Sadly, though as it already has reputation and 650 mil. users. The nature of FB still has its allure as it captures people in moments where they may not be purposely signing on to connect with the endocrinologist, but the do anyway. Replacing that with a LinkedIn type site is that is aligns itself with professionals may not see the same success as a social network. My vote is for a social network type site due to both the ubiquitous nature of presence and acceptance as well as the unintended encounters and reminders of care that will occur.