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Data Sharing in Healthcare

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What do you see as the advantages of data sharing in healthcare and what do you see as your top concern?

Data Warehousing
Data Mining
Healthcare
Healthcare Information Technology
Privacy
Compliance
Carolyn C. Tinsley, MHA CLSS GB
4 months ago

11 answers

2

I’ll begin with the top concern. That would be data security and privacy. Technologies to share data exist, but as an industry, and from the perspective of technologies, dealing with the privacy issues are much more difficult as they rely less on clear cut technology and on legal, ethical, and moral metrics that are very fuzzy and vary by individual.

The advantages in data sharing are in providing complete longitudinal use of patient health. The challenge here, though, is that this will only apply where patients are compliant. There are more patients who are not compliant. So, the result in population health is gap-filled and incomplete data.

John Zaleski, Ph.D., CAP, CPHIMS
4 months ago
"As a patient - I care about ME - not population health" - Dr. David E. Marcinko 16 days ago
Right. My concern is that the "technocracy" have no clue as to what is really important. Merely reacting to the premise of the original question. - John 16 days ago
Agreed; many thanks - Dr. David E. Marcinko 16 days ago
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I would like to see hospitals and medical professionals able to share data across the current boundaries of linking the Veterans healthcare system with all other non-veteran healthcare providers. In sharing the data it improves the healthcare delivery in instances where a veteran wins up in the non-veteran system due to accidents or by design where veterans can seek services outside the veteran health network. My dad was often transported to local non-veterans hospital emergency services where knowledge of medical conditions and treatments by the VA would have significantly improved the healthcare he received through the knowledge sharing.

Although that was some time ago, I think there are many instances where VA healthcare services to not communicate with healthcare services outside the confines of the VA network. This situation needs to be corrected.

Sandy Waters
4 months ago
VA EMR HISTORY - ViSTA - Epic - Cerner [10 to 16 illion dollar over ride]. - Dr. David E. Marcinko 16 days ago
Did I mention a two year time delay?and $35-B loss thru the HIEs. - Dr. David E. Marcinko 16 days ago
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The technologies and policy mechanisms are already available to facilitate these data sharing events.  What appears to be the case is that the organizations apparently do not share because they are afraid of the legal risks that they perceive will be faced by them if they do this.  Curiously, HIPAA itself states clearly that all reasonable steps to provide care when necessary, and that there is no intent in the law that such should be denied under any circumstances,  It does however require that all reasonable precautions to protect S&P of the information even so.

This tells me that these organizations have not taken the trouble to work out the procedural flows to make that happen.  What worries me about this situation is that, sadly, this may mean someone has to die and their survivors must sue for redress to force a change in the rules.  Even sadder is that with proper review of how these  situations arise and the potential impact on patient well-being, we have the ways available now to prevent such information blackouts and thus better ensure patient care delivery. 

Ross A. Leo
4 months ago
Nothing new here - Dr. David E. Marcinko 16 days ago
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In addition to above it’s important to consider the data sources, who is asking or wants to know, what and why they want to know. Too often the data does not support the investigation to provide meaningful or action knowledge in healthcare. Last but as important is the interpretation of the data and information determined.

Randy Vogenberg, PhD
4 months ago
Yes sir - Dr. David E. Marcinko 16 days ago
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As a security professional and former executive in healthcare, my concerns regarding data sharing in this arena are less about security and privacy and more about the value and goal of the data sharing.  I certainly do not ignore the S&P of the information, but I have found that understanding the goals of the sharing effort contributes greatly to how the S&P must be addressed while still enabling value delivery.

Much of the future success of medicine will depend on data science, data mining and the like to correlate, analyze and model the information wealth already available and to come.  Information sources can be anonymized or tokenized to obfuscate individual identity without eliminating the data sought.  One of the envisioned functions of an HIE is to facilitate such actions pursuant to effective data aggregation and sharing. 

Developing proper de-identification policy to address the sharing requirement will result in improved technical implementations and enforcement of S&P rules.  Developing a policy around this will encourage sharing by standardizing the methodology of preserving S&P and giving better technical clarity.  I have already worked with organizations on this problem, and with work achieved success in facilitating sharing and preserving S&P by eliminating it as an issue through such methods..

Informing patients that only de-identified forms of their information will be used, if at all satisfies the regulatory requirement.  If needed, consent would be obtained. HIPAA's rules on research permit this already, and if done by the existing rules on research (extending them to data science/research devoid of identification factors), S&P becomes a non-issue.       

Ross A. Leo
4 months ago
Checkbox Cookbook Medicine: http://diseasemanagementcareblog.blogspot.com/2019/01/the-cure-for-checkbox-medicine.html - Dr. David E. Marcinko 18 days ago
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Am not a fan of "non-compliant" myself, although it is what seems to be used. Getting people to take action on their health is a horse of a different color. I think the way it happens (again, from my own observation) is to let people know you care about them. This is not easy work.

I have been in prison cells taking vital signs on prisoners and have had to calm them down in order to get good readings. I have been with 80 year old grandfathers who have refused to take their insulin because their children have not spoken to them in 6 months and they have not seen their grandchildren in years.

The last thing these people care about is taking action on their health. To the contrary, they just want to die.

My approach is to talk with them and attempt to highlight the good even if this is just a small ray of light. People are complex and my fear about technology is that it ignores this whole aspect of the human being. Having spoken at conferences and sat on panels where people make claims about how wonderful certain technologies are, I attempt to bring a little bit of reality back into the conversation by asking about who has observed and spoken with the patient.

Case managers who have access to video as well as vital signs and who make regular calls upon patients is, in my opinion, one approach that is a step in the right direction. My earlier comment about Community Paramedics is another. It is simply necessary to look, listen, and feel the patient. There is no technological substitute for these. Anything (technology, other) that can facilitate the human touch can work a world of good on the patient and help them to become better custodians of their own health.

When a person has a reason to live, they want to live.

John Zaleski, Ph.D., CAP, CPHIMS
4 months ago
Well said - Dr. David E. Marcinko 18 days ago
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John Zaleski, Ph.D., CAP, CPHIMS Great post. What do you mean by patients who are "not compliant'? Not compliant in what regard?

Carolyn C. Tinsley, MHA CLSS GB Great question - but quite broad!! Who would be doing the data sharing? My focus is always on the patient perspective but most data sits with providers, payers. The challenges are different depending on the "who" and the "what".

Vera Rulon
4 months ago
Data sharing among providers for purposes of treatment and between providers and payers for payment. All instances are within HIPAA. Trying to identify concerns within that framework, as we have seen breeches and others misueses occur. - Carolyn C. 3 months ago
A solution in search of a problem for only 20% of the co-morbid sick population. - Dr. David E. Marcinko 10 days ago
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Vera -

Non-compliant patients are those who do not follow their prescribed regimens, whether for medications or monitoring. Patients have various reasons for being non-compliant. For instance, they can lack motivation. This can be true of patients who are depressed, suicidal or are suffering from other psychological ailments. Patients who are addicted to drugs or alcohol also represent a cohort who can fall into this category.

I use the word "can" to indicate that everyone is different. But the key message is that patients need to be treated holistically.

There are many great technologies that have come on the market / are coming on the market to assist with remote patient monitoring for the purpose of sharing data with physicians and others. But, these only work for the motivated patient.

In addition to my career role, I am a volunteer emergency medical services first responder and I have seen many patients (and assisted in treatment of many patients) whom I would categorize as being non-compliant. I have also come upon a fraction of patients who are very compliant. In my experience, though, there is a significant population that falls into the non-compliant category. Of course, this varies by geographic location and many other factors. There is not enough space here to go into the details.

John Zaleski, Ph.D., CAP, CPHIMS
4 months ago
Am trying to understand the challenges in longitudinal data that that a non-compliant (I'm not a fan of this term) causes. You are so correct about enabling technologies that work for motivated patients. To me, the challenge here is getting people to take action on their health. Then, data and information become the best enablers with tech to support. - Vera 4 months ago
I use the 80/20 rule. Needed for only the sickest 20% population - Dr. David E. Marcinko 10 days ago
If I surveyed the last 100 patients that I treated and cared for, an unscientific rule of thumb assessment would be that maybe fewer than 5% were actively managing their health constructively. Of course, it depends on demographics and location, etc. Just sayin’. - John 10 days ago
ACUITY - But, bet that most knew their medical history, allergies, drugs, etc. - Dr. David E. Marcinko 10 days ago
Not difficult - Dr. David E. Marcinko 10 days ago
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Agree that HIPPA /HIPAA is misunderstood by most let alone the intent. HITEC didn't help matters either in the real world marketplace.

Randy Vogenberg, PhD
4 months ago
Amen, brother - Dr. David E. Marcinko 18 days ago
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The VA

VAH patients have already established access to quality affordable healthcare and now can get copies of their charts on an app.

The rest of the non-Veteran Non-Medicare Aged American populous would love to have access to quality affordable healthcare, and couldn’t really give a darn about access to their medical records .

Access to charts is no substitute for access to quality affordable healthcare.

Any thoughts?

Dr. David E. Marcinko MBA
11 days ago
I'm glad to find a kindred spirit. I read these blogs and all of the activity coming out of HIMSS this week and I hear about "solutions" in for the form of health IT and ask myself where is the patient? Patients want to know their providers are up-to-speed on their conditions, history, medications, interactions, etc. so they have a feeling of trust that they will be cared for. - John 11 days ago
Agreed - Dr. David E. Marcinko 11 days ago
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HHS releases long-awaited interoperability rules with new requirements for data sharing for insurers.

HHS just released two proposed rules that requires insurers to provide electronic health records to patients at no cost for certain plans by 2020. The rules proposed requiring healthcare providers and insurers to implement open data sharing technology to ensure data can move from one plan to another.
(Modern Healthcare)

Any thoughts? 

Dr. David E. Marcinko MBA
11 days ago
Device vendors need to do the same. If enables better communication among providers, terrific. If enables patients to visit new providers and have their data seamlessly provided without having to retype 15 forms, wonderful. But, am a skeptic. - John 11 days ago
Agree - with the skepticism, too. Thanks - Dr. David E. Marcinko 10 days ago

Have some input?