An Equitable Model for data sharing in the National Health Information Network

 

 

Just like there are political debates that put people on the left or right, there is an ongoing debate in the health information exchange world of the right model for the national health information network.  On one side of the argument are people who ardently believe patients have to be fully empowered to take charge of their own health information and decide on who they would like their information to be shared. In this discussion we call this the “patient-controlled health information exchange”. Then there are those who are on the other end of the aisle who don’t want patients to be responsible but want providers to be responsible for deciding the appropriateness of the situation when to share the patient’s information with other providers in the continuum of care (“Provider-controlled health information exchange”). In this analysis, I try to present both sides to this debate and allow the reader to draw conclusions for themselves.

 

 

Patient-controlled health information exchange:

 

 

In this model of data exchange, the hub of information is the patient.

 

 

 

 

The patient decides what information can be shared between say one hospital and another in the continuum of care. For example, a patient may be initially admitted to the nearby critical access hospital for emergent care and subsequently transferred to a tertiary care hospital that provides advanced care. In this situation, the patient should have apriori permitted the two hospitals involved to share information with each other. Actual data flows from the critical access hospital to the patient-controlled store (also known as the personal health record – PHR of the patient). There the data sharing permissions set by the patient govern if this data is subsequently allowed to be shared/accessed by the tertiary care hospital.

 

 

Advantages of this model:

1. This model allows patients to have the best possible privacy. They get to choose which institutions can get access to his clinical information.
2. The patient can use this information to study treatment choices and be self educated to make the choice that works best for her.
3. The patient can choose to anonymously get second opinions on diagnosis and treatment options.
4. The patient can use self help healthcare devices and gather such information in one place for lifelong utility in care situations.
5. Since the information is maintained by the patient, it is much easier to create this data even when providers do not cooperate in providing the information to the patient.

 

 

Shortcomings of this Model:

1. Patients who do not have access to the internet will not be able to participate in this model. A recent study by a marketing research firm Parks Associates, put the number of US households who have no access to the Internet at 18%. This means over 50 Million Americans will be left out by this model.

What is more striking is that the same study showed that 50 percent of those who have never used e-mail are over 65, and 56 percent had no schooling beyond high school. Essentially the most vulnerable portion of our population that are dependent on government sponsored healthcare (Medicare and Medicaid) are more likely to not have access to the Internet.

2. Certain healthcare providers complain that data coming from patients may not be reliable. For example the data may have been censored by the patient in critical areas that may be extremely relevant to care. This missing data, in some situations, may put the provider at risk during the treatment of the individual.
3. Thirdly, this model requires a cultural shift in how providers view their role in diagnosis and treatment. Some of them express concern that some of the clinical documentation may now be seen by the patient and that may affect the patient-provider relationship. One read through this article on a recommended documentation model for family physicians makes me conclude that if this note were to be read by the patient, possibly, the patient may have disagreements, leading to follow on phone calls.

 

 

Provider-controlled health information exchange:

 

In this model of data exchange, the provider makes the decision on sharing of the patient information with no effort required on the part of the patient. The only requirement would be for the patient to consent to such data sharing at the origination of the clinical information and the subsequent point of access of the clinical information.

 

 

We will use the same example as before to illustrate the difference in the model. A patient was initially admitted to the nearby critical access hospital for emergent care and subsequently transferred to a tertiary care hospital that provides advanced care. In this situation, the patient’s consent is obtained for data sharing at the point of admission to the critical access hospital. Subsequently, when the patient arrives at the tertiary care hospital, the patient’s consent is obtained at the point of admission to access and retrieve the care records from the critical access hospital. Actual data flows from the critical access hospital directly to the tertiary-care hospital. If the patient is unable to give consent, a legal guardian maybe able to do so on behalf of the patient.

 

 

Advantages of this model:

1. This model works behind the scenes and can serve the entire population whether or not they use a PHR. So, this model could address the situation faced by 50 Million Americans who have no meaningful access to the Internet.
2. This overcomes any cultural inhibitions that physicians may have over data being routed through patients. Clinical information is shared directly from one provider to another.
3. The solution provides a high degree of privacy protection. However, the privacy protection is certainly not to the extent that an active patient may want in terms of censorship of selective information.

 

Shortcomings of this Model:

1. Patients will not be able to contribute data that may not be present in the provider systems. E.g. a patient maybe taking certain over-the-counter medications or supplements which may still be relevant for physicians in the continuum of care to know.
2. Many providers lack electronic health record (EHR) systems. Even when they do have EHR systems, they are reluctant to make the investments necessary for the effective transfer of information that benefits patients. May provider feel that the financial incentives are not aligned for them to make this investment.
3. Some degree of data transfer occurs today through paper records being exchanged. The transition from the paper-based workflow to the automated electronic workflow has inherent inertia to overcome. 

 

Solution Recommendation for the NHIN

Even a cursory study of the above two models leads to the obvious question, “Why not do both?” By doing both, the active patients can choose to control data sharing by playing an active role in their data sharing through their personal health record system. For those patients who are unable or unwilling to play an active role, the HIE system does the heavy lifting on their behalf while still respecting their privacy and obtaining appropriate consent. 

 

 

 

Another interesting benefit is that even for those that are intent on controlling data sharing by themselves may choose to allow the providers to directly share information with each other under certain circumstances where such an exchange would benefit the patient’s health outcomes.

 

The network could be built in such a way that certain regions may choose to adopt the patient-controlled model first followed by adding the provider-controlled model or vice versa. Since both models can coexist without any problem, this is entirely feasible.

 

Case Study

In one implementation that the author is involved, the providers sponsoring the exchange chose the hybrid model. In this model, the patient gets access to her information through a patient portal (PHR). On this portal, the patient has the ability to choose the list of providers who can publish information to the PHR. Then they configure a separate list from the list of participating providers to have read access to their PHR records. For those who do not sign up for the PHR, their data can be exchanged by obtaining their consent at the point of care (both at the origination point as well as the consumption point).