It's not all about the money. At some point doctors need to start acting as patient advocates rather that hospital employees on commission.

Patient experience ties both financial need and medical care together. Internet reviews already influence the way people buy products or services. It's in the health institutions best interest to prioritize the patient and promote a "customer first" mentality.

It's interesting to consider the history of automating processes outside of healthcare. Factory improvements require large initial investment and provide long term savings. Data sharing is no different. Costly and time consuming processes will soon be automated and provide overall savings to health institutions.

In my opinion, any initiative for sharing data needs to be targeted at the patients. In my experience, sharing data is a very trivial task, assuming the data is electronic. However, the complex legal and moral implications of sharing patient data is the main obstacle. The property rights rest with the patient, so I don't really see a way around this. I would go so far as to say, that there needs to be a regulation compelling health records to be used only with express consent from patient (even if you have the data). I say this because there is a divide in the industry - the ones with the data and ones without. The data holders have all kinds of incentives to exclude those without, irrespective of the patient's wishes. Once the playing field is level, everyone will start clamoring for 'sharing and caring'.

Thank you for your question. I was wondering the very same thing, Hayward! Perhaps if this is government regulated, tax incentives or the like would help. Would creating a positive public reception of data sharing encourage companies? Similar to "giving campaigns" and employee volunteering, they may see a marketing pay-off. What do you think?

In response to Adrian’s comment, unfortunately, many physicians are now employees of large institutions. In Massachusetts, only 20% of physicians are self-employed and that number is going to drop to single digits in the next five or 10 years. As employees of these larger businesses (yes they are businesses) the individual physicians do not have control over how the institution uses the data in the institution’s EHR. It is also unrealistic to think that the physicians are going to sacrifice their professional career and income to obtain control over the data.

Re: Jonathan’s comment that “It's in the health institutions best interest to prioritize the patient and promote a "customer first" mentality” I fully agree and we already see this happening. In my hospital, the motto which is plastered on all the walls is “patients first in everything we do”. However, how this plays-out may not be what we expect. For example, this may translate into all (paying) patients getting a private rooms, iPads to use while hospitalized, fancy food and very personal care to ensure they write a good review for others to read online. However none of this matters when it comes to the quality of healthcare provided or the need to reduce the cost of healthcare.

Part 2

I am also less optimistic than Jonathan who stated “Costly and time consuming processes will soon be automated and provide overall savings to health institutions.” This is an assertion which is yet to be proven. Having been involved in information technology for very long time, almost everything in information technology take substantially longer and cost four times as much as would have been expected. In addition, assumptions which would appear to be rational and predictable, when applied to healthcare turn out to be incorrect. For example, 2-3 decades ago, prior to the first HMO, everyone “knew” that the HMOs would be able to drive down cost and improve quality. Even now, many still believe that if the right incentives are in place, eg pay for performance (P4P), the cost of healthcare would drop precipitously in the quality would rise. Now that we’re starting to see the data, it is obvious that those dogmatic assertions turned out to be very wrong.

Part 3

Given my experience with patients, I think it is unrealistic to expect them to be involved in decisions regarding data sharing. Most people are just trying to get their medicines at an affordable price and these abstract benefits, which may or may not flow to somebody, will not immediately effect the patient and therefore they are not going to partake in any “data sharing” decisions. Further, the healthcare system really does not have the bandwidth to engage in a discussion of this type with patients, let alone expecting the patient to truly understand the ramifications of sharing their data. It is well documented that most patients do not understand the full ramifications of “informed consent,” and agree to sign the form simply because they trust that physician.

part 4

Finally, this needs to be done in a way that does not involve financial disincentives. Community hospitals, safety net hospitals, small medical groups, even intermediate size hospitals, do not have the luxury to spend money on health IT issues which are not going to immediately benefit the institution. We can argue that it is the right thing to do, which it is, but the institution’s first goal is to keep the lights on and keep the hackers out. There is nothing left over after that to deal with these other issues. I had tried to get hemoglobin A1c data (blinded) of all the patients in my hospital and only obtained the data after two years of trying. And that was a very simple ask. Imagine if I said to them “send me a list of patients who are of a specific age and are taking of specific drug and who had a specific lab abnormality and who failed have a follow-up visit with their primary care physician within 6 months of the lab abnormality.”

Part 5

I am sorry to be so pessimistic but that is the way I see the world of HIT. I love IT and healthcare and I think it has great potential, but we need to learn to walk before we can run. I think we need to promote small apps, which can be objectively assessed as to their efficacy, then expand upon what is proven to work.

We also need to remember what is the problem we are trying to solve. I think we would all agree that the first and most important problem is to reduce the cost of healthcare and improve the quality of healthcare. The solution to that problem is not in health information technology. The solution to that problem is investing in social services/early childhood education. This has been demonstrated in Europe and in the US and the Robert Wood Johnson Foundation has been a major advocate. Unfortunately, that approach does not employ health information technology people, does not push money into the healthcare system and is not nearly as sexy or easy to implement as health information technology. The lack of a constituency for those non-sexy services and the vocal constituency in favor of (always more) health information technology makes it unlikely the ship is going to change directions.

"Don't tax you, don't tax me, tax that man behind the tree." goes the old saying. @Bodhisattya's comment above "The Patient is KEY" gets my vote because it recognizes that patient data is used as a means to lock in the patient and avoid transparency of cost and quality. All of the comments about "IT is expensive" and "change takes time", and "physicians are just following orders" may be correct in some sense but are also a cynical avoidance of our responsibility to our patients. As long as physicians AND hospitals profit from a lack of patient mobility and a lack of transparency, cynicism rules the day.

I try to view the world objectively and optimistically. While you call it "cynicism," I believe that my statements reflect the reality as to how the healthcare system really works today.

It does no one a service to say "physicians should take control of the situation and demand..." when that is no longer how healthcare system works and that will only result in the physician losing their ability to practice in their chosen community.

Today's healthcare IS a collaboration of many participants and physicians and the patients are only 2 players among many, and they do not have the political power to take control of the healthcare system. Maybe things will change in the future, as the healthcare system seems to completely re-invent itself every decade, but I do not see that change happening anytime soon. I too wish it were otherwise.

That said, while recognizing the barriers we face now to patient control of their data, we can start setting the context for how that might change in the future. Some of you many know that I write a blog about informatics-related topics, and I recently was motivated to write about an aspect of this topic based on the paper by Mikk, Sleeper, and Topol in JAMA (DOI: 10.1001/jama.2017.12145). We ultimately need to move to cloud-based, standards-based patient data stores, with the EHRs of the world then (with appropriate authorization by the patient and authentication by the system) would access that data store. The challenge is how to get there, and the cost will ultimately need to become part of the cost of healthcare. Here is the link to my blog, and I welcome comments and suggestions:
informaticsprofessor.blogspot....

Dr. Hersh's vision is more realistic than some may think. Dr. Chen and I host a demonstration project at hieofone.org/ that uses the FHIR standards and emerging blockchain credentialing for the physicians and audit for authenticity. This enables any patient to host their own trusted health record that authorized physicians can sign into, update, write a prescription, etc.. The linkage with institutional EHRs that have enabled the OpenEpic API interfaces is also operational. Check out the website, and the 2-minute highlights video.

As Dr. Hersh notes in his blog, a longitudinal health record needs to be standards-based. It also needs to evolve and last a lifetime. This precludes proprietary approaches and walled gardens as a business model. Patient-centered health records need to be as open source and "continuously learning" as medicine itself. This brings us back to the money thing. Will patients have a right to a standards-based and open source health record? Or, will each patient be captured by some combination of EHR vendor and hospital or insurance business? The standards and blockchain trust technologies are almost here (as we show) but the business and medical profession issues are yet to be discussed. What will the AMA and our professional societies do about this?

The manuscript concludes "For data sharing to become more common, the culture of health care, public health, and medical science will need to evolve such that refusing to share is understood as counter to the best interests of individuals and society."

The culture is already changing. This manuscript and our discussion are signs of the change. Data sharing and interoperability are national conversations today and technology is increasing alongside customer expectations. With internet forums and blogs, refusing to share is a public statement.

I do not dismiss the financial issues Hayward presents and I do see real potential value in Adrian's HIE-of-1 model. Beyond that, data-sharing should ultimately give: (a) patients information in a way that enables them to make value-based decisions regarding their care; (b) clinicians patient-generated information that enables them to make decisions that take into account psychological and SDOH factors that influence their ability and willingness to be engaged and actively involved in their care and health maintenance; and (c) researchers and model-builder information they need to develop, continually evaluate and improve care guidelines.

Although it is early in the patient-engagement and "Patient Portal" game, there is data to suggest that these innovations may not move the needle on the quality/cost problem as we had expected. For example a 2013 AIM concluded "Evidence that patient portals improve health out- comes, cost, or utilization is insufficient." (Ann Intern Med. 2013;159:677-687) and there is data that providing patients with cost data, thus enabling them to choose a less expensive Rx option, was not effective (I do not have that reference readily available.)

Again, I am sorry to be such a "bummer" but we need to keep our eye on the data if we hope to solve the cost/quality problem and not simply pursue a goal just because it seems rational or like it would be "meaningful." The history of medical care is replete with "treatments" that everyone "knew" worked
but when put under the microscope were found to be useless/harmful.

Patient portals in it of themselves are not effective enough to drive patient engagement or move the needle on the quality/cost problem as Dr. Zwerling suggests. The fragmentation of these portals where they are directly coupled to an institutional EHR only exacerbates the problem. How realistic is it for a patient to remember possibly more than one login to different institutions? How realistic is it for a patient to possibly remember which institutions they have gone to for care, especially when patients are going to urgent/immediate care centers seeing different providers? There is clearly a disconnect between patient expectations and the current reality of our Health IT as most *assume* that institutions and EHRs all talk to each other and are then completely baffled that it is not the case. Adding another patient portal layer to the existing fragmented EHR landscape will be a losing battle. We must rethink how we can harness existing and emerging technologies to put patients and physicians (irregardless if they work in an institution or not) front and center, not as an afterthought like we are currently experiencing.

I agree that today's patient portals (incl. PHRs) are not a solution. Instead, I contend we need a completely different type of patient-facing tool, more like a personal health profile that provides meaningful information tailored to a patient's specific health needs/risks, literacy level, degree of knowledge, social determinants, etc. It should promote useful communication between the patient and care team by helping to structure encounters around discussion of the patient's situation/problems and the available treatment plan options, including their potential risks, benefits and requirements. It should help guide the patient through a learning process creates a rational/realistic mindset and strategy for establishing and implementing the treatment plan, and which addresses the patient's concerns and fears. I have concrete ideas for such a tool; one that integrates the best of today's health IT and fills the gaps through collaborative innovation.

Dr. Chen and Dr. Beller make great points. St Cloud VA Health Care System developed "Health Hub" as one patient centered location for all VA programs and electronic modalities. Veterans stop by, have a cup of coffee and receive education and/or support for any need. This reliable one location for support encourages the less than interested, to give patient portals a try. As I say "if it causes you problems, give me a call. If you have to call 6 times, call me 6 times." One location for support, frees clinicians from following program's changing websites and workflow. "Want your patient using the portal? Send them our way and we'll help them sign up and show them how to use the computer."

One location for veteran and staff support eased our Veteran Health Information Exchange (VHIE/VLER) implementation in one of the nations most legally complicated states. The state of Minnesota requires Dual Consent authorization for health information exchange. Authorizations must be signed on both sides for bi-directional exchange. We mailed VA side of authorization to all 38,000 St. Cloud veterans with 16,000 signed and returned. The volume of available information and the veterans themselves, encouraged community providers across the state to join VHIE and exchange health information with the VA.

Last summer, I called every provider in MN, brought them all together on one call and discussed details to state wide VHIE implementation. In the spirit of helping Veterans, we received no competitive type resistance. The systems that could afford it were very supportive, so much so, they pressured us to grow faster then anticipated.
fedhealthit.com/2017/05/7618-2...

Modern Healthcare
By Rachel Z. Arndt | November 30, 2017
There's a new app available for healthcare patients to make some money off their medical data.

Falls Church, Va.-based healthcare IT company Health Wizz has created a patient-data-aggregation platform that allows patients to trade and sell their data to pharmaceutical companies, researchers and other organizations.

The platform, which was previously available in beta and was relaunched Thursday, runs on a mobile app through which patients can aggregate their health records.

"We provide interoperability on the phone itself as opposed to waiting for the electronic health record companies to provide interoperability," said Raj Sharma, CEO of Health Wizz.

Patients pull the data into the Health Wizz app via EHR patient portals. They can then use the DirectTrust framework to send their data to providers.

Or they can use the blockchain to share data with organizations actively seeking it out, such as pharmaceutical companies and researchers. The blockchain does not store the actual records but instead points these organizations to the sources of a patient's data, which they can access after getting digital permission.

The blockchain also enables the financial interactions Health Wizz encourages: Patients can charge—in a cryptocurrency similar to bitcoin—for access to their information. The patient decides whether his or her data will be anonymized or not... truncated.

modernhealthcare.com/article/2...

DirectTrust is an organization that certifies HISPs (health internet service providers) through which data flows from sender to recipient using encrypted email as per the Direct Projects technical specifications. It's fine, however, the data are not encrypted end-to-end (from sender to recipient) since the data are exposed briefly at the HISP; business associate agreements (BAAs) reduces the risk of lawsuit for a breach. If the sender and receiver have digital certificate, otoh, the data are not exposed, so DirectTrust and the BAAs are not required' and if identity certs are also used, then the receiver has reasonable certainty who sent it. Blockchain uses a different method of transport and data security. All three methods are P2P capable. And selling one’s own PHI seems fine, but I don’t know if there would be unintended consequences. Good to explore new innovations.

I think this vision of continuous learning is something which many of the systems are aspiring to, but is a long way off. Healthcare data is locked up in silos, albeit for a good reason. There are multiple barriers to data sharing, and not having a singular data model is one of them.

Yes, we should aspire to a learning healthcare system – despite all the hurdles, we need to start now. As pointed out, there are many barriers – some of which will take time - but there are also many opportunities, as discussed in the paper, which we can begin to address sooner. For example, sharing clinical trial data from research studies is a first step and has already begun (yoda.yale.edu).

I work in a Health Institution focused on teaching, which has a University Hospital, in Brazil. The implanted health systems always try to provide the health professionals who work in the organization the possibility of sharing the data with the goal of bringing improvements to the people in their health care. And I agree when the article tells us that data holders, including: health systems, researchers, health care companies, and others, have the most of the benefits of sharing that data.

The US health system has taken significant strides to ensure that health IT is technologically interoperable, but much more work needs to be done to ensure that health IT systems are legally interoperable. The fact is that the US protects sensitive information using a conflicting patchwork of laws. Data protections differ depending on the jurisdiction, entity, data system, and purpose of data use. This patchwork of laws reinforces existing data silos by prohibiting certain secondary data uses or confusing the distinction between perceived legal barriers and actual legal barriers to data sharing. Moreover, unification of legal data protection standards is possible (e.g., the EU General Data Protection Regulation is going into effect in May 2018). The article correctly argues for government to establish “the legal and regulatory tailwinds for data sharing.” I would argue there is an ethical imperative for it to do so.

This standard presents an overview of the requirements for architecture of a system that processes, manages and communicates information from the Electronic Health Record (EHR). In order to ensure that these EHR Systems are clinically valid, reliable, and ethically sound, supporting good clinical practice and facilitating data analysis for a multiplicity of purposes. However, this International Standard does not specify a complete set of requirements that need to be met by an EHR System for direct patient care or other use cases, contributing only to EHR information governance within those systems.
EHR should allow the communication of health information to support shared patient care, improved quality of care, and effective use of resources. This includes evidence-based care support and the ability to navigate and analyze EHRSs for a wide range of purposes. Users should be able to access the health record information of any system and in any format that was originally stored.

Thank you for your thorough responses! I wonder, for groups whose data acts as a business asset, how can we provide incentive to them to share? And for future data, how can we create a standard of data collection?

A continuous learning health system should be secure, inexpensive, easy to use, and useful. It should generate insightful knowledge by sharing lessons learned and clinical data that are transformed into actionable evidence-based information. This knowledge should be used to build, evaluate, and continuously evolve decision models.

Technology solutions able to support a continuous learning health system should have certain capabilities. One is the ability to “harmonize” different terminology standards and value sets (e.g., via robust mappings) across disparate data stores. Second, they should work with both centralized data stores (e.g., registries, data marts) and decentralized storage (e.g., local database) models (tinyurl.com/ybk8z6go). And third, they should support both centralized client-server and decentralized peer-to-peer (P2P) communication networks. The links below discuss the P2P network model, which may include applications that use automated email secured end-to-end using encryption and identity certificates. P2P most closely reflects how clinicians communicate with one another and enables people to connect in networks that cross organizational, professional, and geographical boundaries.

tinyurl.com/yax5c6q4
tinyurl.com/ycanlmmp
tinyurl.com/y96mhxpo

I've been participating in ONC's Structured Data Capture initiative (SDC) technical workgroup since its inception in 2013. SDC establishes standards by which structured data are captured, stored, transmitted, and used in the real world for clinical research, patient safety, adverse event and public health reporting, determination of coverage, and more. The technical workgroup is currently led by a physician (with the College of American Pathologists). It defines how to design, build, and implement highly functional electronic forms that are clinically relevant, logically structured, efficient, and flexible enough for just about any use case. I contend that SDC provides an intelligent, practical, and evolving standard by which data are collected and shared.
tinyurl.com/ycod2kez

Thank you for sharing these resources! I am excited to check them out. I am wondering, with such a large mesh network, would it be possible to monitor activity? Should this be a concern?

Thanks for the question. There are tools for monitoring mesh network activities (e.g., tinyurl.com/y8gqdyv8 and tinyurl.com/y9hkmgjx). Alternatively, if the nodes in a mesh network communicate through encrypted email (SMTP + S/MIME), then a different type of monitoring can be used. For example, ONC’s Direct Project (tinyurl.com/ycfkm43r) uses Message Disposition Notifications to indicate whether an e-mail message was dispatched, processed, or failed. It’s also possible to invoke Delivery and Read receipt tracking, e.g., using MS Outlook.

Some of the most exciting and useful opportunities imho for a Learning Health System and data/information sharing are coming through repositories that allow for reuse of the analytics, for example, R code, along with combined datasets across entities. Fundamental to reusing analytic techniques and tools, is having a common data model, such as what PCORNet is doing, and what the OHDSI (pronounced "Odyssey") collaboration is doing, the latter especially as it relates to having well-defined repositories (hosted through GitHub) and tools, including its own precision population health R package. I hope the NIH All of Us initiative can rapidly-ish get that de-ID data to the public ... to the extent we can foster easy to use, active communities around these resources the more likely they will truly contribute to a learning health system...

I agree. The purpose of a learning health system is to build sound knowledge that informs decisions and guides actions. The kinds of algorithms/analytics and data models you mention all have good knowledge-building potential, along with pivot tables, machine-learning/AI, interactive visualizations, and sharing of lessons learned based on clinicians' (and patients') experiences. I think a variety of tools and repositories are needed for different use cases; some would be for researchers and Informaticists, others would be clinician-facing, and still others for patients and for payers. Also needed is a good way to manage and disseminate that knowledge as it continuously grows and evolves, e.g., through knowledge feedback loops where it is evaluated and modified then used, as they say, “from bench to bedside and back again.”

The link below reflects my previous post about the importance of analytics and knowledge feedback loops. A few quotes follow:
"It's one thing to say you're going to embrace data analytics; it's another to do it. And it's something else entirely to actually turn the insights derived from clinical and business intelligence into better care and lower costs...Performing analytics...is one thing...turning that insight into concrete plans for performance improvement – and communicating them to hundreds or even thousands of clinicians – is quite another. 'There's all this math...Now try explaining that to a doctor when their most important priority is to provide excellent patient care.'"
tinyurl.com/pq73lsr

I like this idea of a "knowledge feedback loop". This is the goal with much of analytics. Why is this not universally in place now? Where are the roadblocks in the loop that prevent knowledge from being passed around and updated?

I believe we need to make it easy for patients to share their data and they should whenever comfortable doing so. I don't believe we should force them to engage in controlling their data, reading it, viewing it, downloading it, or submitting it. They should be able to without our forcing it down their throats.
The easiest way for them to share is to make it available to all who need it to provide their care -- without their having to do anything -- except to opt-out when they don't want to share.

I don’t know if I’d call them roadblocks, per se, but the following are challenges to free-flowing knowledge feedback loops.

A conversation in a related thread, about interoperability, touched on a few issues related to the quality and adequacy of patient data being shared today. In this case, the validity and reliability of shared knowledge is reduced due to problems with the data and information upon which the knowledge is build. If such knowledge is inferior, then feedback about it has little value (except to say that knowledge is not useful).

A second impediment is the control of information for “business layer” reasons. This has been referred to as the “dynamic tension between exploration and exploitation.” That is, does an organization promote knowledge feedback loops beyond its boundaries that encourages diverse groups of people to build new knowledge and evolve the old? Or does it keep tight control of its knowledge to exploit the market (for competitive advantage) thereby constraining the diversity of feedback and thus its potential value.

A third is the challenge of managing feedback from those who use the knowledge to support patient care decisions. Years ago we were involved in a project to develop a knowledge management system (outside of healthcare) in which lessons learned (LLs) and supporting data from the field were shared with subject matter experts who evaluated them against existing best practices (BPs) and, based on their analysis, would either elevate the LLs to BPs (sometimes replacing existing BPs), reject the LLs, or just keep them as LLs awaiting additional information.