Case Study: A Health Record Bank PilotOffering Patients Control Over Electronic Health Record Access
Some consumer advocates, including Deborah Peel, M.D., say that health record banks offer the best way to give patients the right to control their records. Meanwhile, federal regulators, working to carry out HITECH Act mandates, are considering recommendations for how HIEs should handle patient consent.
In an interview (transcript below), Jesus Hernandez, CEO of Community Choice, describes the organization's pilot, which was funded by a $1 million state grant and involves about 550 consumers. He:
- Describes how the health record bank aggregates certain information from three EHR systems used by area clinics, immunization records from the state and information entered by patients. The project uses Microsoft's HealthVault technology.
- Outlines how patients can designate the physicians, family members and others who they authorize to access their aggregated records.
- Explains how patients can obtain a report of everyone who has accessed their information in the record bank.
- Discusses plans beyond the pilot phase, such as accommodating hospital records, potentially linking to health information exchanges and providing patients with appointment and medication reminders.
- Reviews potential options for funding the project once grant funding runs out.
HOWARD ANDERSON: Tell us why your group decided to serve as a test site for the health record bank model and briefly describe how the model works.
JESUS HERNANDEZ: We have a history of doing a lot of work, since early 2000, in health information technology, connecting area healthcare systems using broadband. In addition to introducing a lot of telemedicine into our region, we started looking at health information exchange, and the opportunity to pursue that health record bank pilot was a step in that direction. Even though it is a consumer-centric approach, our membership thought that we should consider looking at becoming one of those pilots, and we were fortunately successful in being selected.
Health Record Bank ModelANDERSON: So for those who don't know about health record banks, describe briefly how they work.
HERNANDEZ: We are partners with Microsoft HealthVault. It is basically a large data store with a lot of security features that is also designed to be controlled by the consumer. So because that structure is already there, it was easy for us to partner with them, develop a user interface for patients, or consumers, to use and essentially create their own personal health record within this infrastructure of a health record bank. In addition to that, we built interfaces to various data silos in our community and the state. We have three interfaces with large electronic health record systems in our region, as well as an interface with the state immunization registry.
When you enroll and activate your own account within the health record bank, you can then have your data from those various silos uploaded to your personal health record. For patients who have their data in two or three different facilities because they are getting care at various facilities, which is very common, they can all be pooled to one place where the patient has the ability to see that information in an aggregated way.
Microsoft HealthVaultANDERSON: Now you mentioned Microsoft HealthVault, what is their role in this? Is the data stored in their database or in your own separate database with Microsoft HealthVault as a front end?
HERNANDEZ: It is in their database. It is something they have made available at no cost to the consumers; HealthVault committed to consumer-centric access to health information. HealthVault is basically just a data silo, and a lot of various applications operate within this environment that they have created. In addition to PHR applications like the user interface we are using for our health record bank, there are a number of other applications, some that relate to specific other data silos, like pharmaceutical or labs or in some cases devices that can serve consumers and providers with chronic care management tools. ...
Recruiting ParticipantsANDERSON: How many patients are participating in the pilot and how did you go about recruiting them?
HERNANDEZ: At this point we have around 550 people enrolled in the health record bank, and primarily we have focused on community outreach, health fairs, and activities that go on in the community. We have spent quite a bit of time creating better, more streamlined enrollment processes that can be utilized or worked into the workflows at the clinics. The next phase is actually to work with our member clients so that they can assist in the enrollment at the time of a medical encounter.
Health Data SecurityANDERSON: Tell us a little bit more about how you have gathered the data that goes into the patient's record inside the health record bank. And how is that gathering of data kept secure?
HERNANDEZ: At this point the interfaces that we have built generate only a selected data set from the EHR systems that are participating. For example, we are uploading the problem list of a patient, their medications, their allergies and immunizations from the state registry. That is the data that can automatically be uploaded once we activate a personal health record for an individual. But the individuals can input their own data as well.
The way that happens is at the time the person enrolls or wants to activate their account, they actually have to go to the specific clinic and visually be authenticated for whom they are so that we can make sure that we are actually activating an account for the right individual. Then, once they go through that authentication process, the clinic will match their medical record number to a security code that is available through HealthVault, and that matching then allows for data to be uploaded on a scheduled basis.
ANDERSON: And this data that you have connections to, is that clinics as well as hospitals?
HERNANDEZ: Right now it is only clinics. We are looking to build interfaces to hospitals for the purpose of giving patients access to discharge summaries or discharge notes from the EHRs, because we are hearing that that would be of great value to patient care providers.
Controlling Access to EHRsANDERSON: Now consumer advocates really like the health record bank model because it enables patients to control who can access their records. Explain to us how that control is offered.
HERNANDEZ: It is very parallel to the kind of technology or security measures that are used in the banking business. Once you activate your account, the consumer has a user name and password, and there is a secret question that you can use if you ever lose your user name or password. They have the ability then to assign access to anyone they choose to, and they are the only ones who can do it.
So they can assign access for a specific amount of times to maybe a school nurse, or it could be their primary care doctor, or anybody who they might want to consider as being part of the care team. ... People who have chronic conditions often will have a care team, and it can include a family member, as well as their primary care doctor, a specialist, anyone they choose. So it is totally under their control and it can be granular; in other words, they can select which data field they want that individual to look at or be able to see. So if someone has something in their record, maybe mental health data, that they don't want specific individuals to have access to, they can control that.
Health Record Bank AccessANDERSON: How do physicians and other clinicians access data within the bank? How do you verify that they are who they say they are?
HERNANDEZ: Again, anyone that has access has to be assigned their own user name and password. And once that is in place, any time someone accesses a personal health record for an individual, the system records who was the entity or individual that accessed that record. So then that allows the patient to generate reports on who has been accessing their account; so there is an audit capability there for the consumer.
ANDERSON: Do physicians access the records bank via some sort of private network or via the Internet?
HERNANDEZ: It is through the Internet, so it is all web based. And again, just like anyone else, the physician would be using the same user interface, the same portal that a consumer is using. As we move ahead, our plan is to create a provider portal that doctors can use, but that would be linked to an actual health information exchange that is more provider-centric. We are looking at how we might parallel that to the health record bank, whether data that is in the health record bank, with consumer authorization, can be accessed by providers through a provider portal.
Tracking EHR UsersANDERSON: How do patients find out when someone has accessed their records in the bank? Do they get alerts or will they get them eventually?
HERNANDEZ: At this point they don't get alerts but they are able to request a report or generate a report that essentially gives them knowledge of who has accessed their account. ... There is still a lot that we intend to build into this system: messaging capability, reminders of appointments or reminders of when their medication needs to be taken and things like that. So there is tremendous potential here to augment what we currently have to something much more comprehensive.
Funding OptionsANDERSON: Now the pilot project was funded by a grant, what do you see as a viable financial model for sustaining a health record bank over the long haul once the grant funding runs out?
HERNANDEZ: We are looking at a number of different financial sustainability models or strategies. Our hope is that we can get enough people enrolled, because with enrollment then your opportunity to develop these sustainable strategies becomes greater.
ANDERSON: So might you end up charging consumers to participate or charging their clinics or hospitals to use it?
HERNANDEZ: Well those are all options. At this point there doesn't seem to be enough appetite among the provider community to pay for this. Maybe if it is linked to a health information exchange, then you can create that kind of revenue to sustain both the health information exchange capability as well as the health record bank if the systems are essentially linked.
As far as charging patients, I think there have been some surveys done that indicate that consumers might pay a nominal amount. So we are going to look at that also. It could be an option of choosing to pay a nominal amount or having ads on your screen when you use your account. We are looking at that possibility as well contracts with other partners, institutional entities, that may have an interest for using this system for their specific interests.
Plans, Lessons LearnedANDERSON: So I understand the pilot is going to be ending at the end of the year. What are your plans for next year?
HERNANDEZ: Our intent is to stretch the grant dollars as far as we can, as well as using some of the revenue we currently have from our membership to sustain what we currently have, the infrastructure. We have been very intentionally keeping the cost of the basic infrastructure at a relatively affordable level so that we do not have a huge overhead to sustain as grant dollars disappear.
ANDERSON: What advice would you give to others that are considering whether to use the health record bank model?
HERNANDEZ: One piece of advice I would give is to do plenty of due diligence on your vendors or the organizations that you choose to work with. One of the setbacks that we had was we initially got involved with vendors that essentially promised a lot and under-delivered. So it was a challenge because we think we could have been a lot further along if we could have built the core aspects of the health record bank much earlier and started enrollment as soon as that was done. ...
When you deal with the partners, such as the clinics that we are engaged with through interfaces, there is always a lot of planning that needs to be done. The IT shops at clinics always have way too much on their plate. So it can be a challenge to try to get the response that you need to get some of these projects off the ground.