Q&A: New York-Presbyterian offers patients a self-serve PHR

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Patients checking into New York-Presbyterian (NYP) Hospital can create an account that enables them to view their health data and have access to it wherever and whenever they need it.

Since April 2009, NYP patients have been able to log into www.MyNYP.org, the 2,242-bed nonprofit’s electronic personal health record (PHR). MyNYP.org uses Microsoft's HealthVault and Amalga technologies to offer patients the ability to select and store personal medical information generated during their doctor and hospital visits. MyNYP.org uses a "pull model" in which patients proactively opt to copy their medical data into their own PHR and access that information using a secure username and password with any Web-enabled device.

Aurelia Boyer, chief information officer at NYP, recently spoke with CMIO.net about the MyNYP.org PHR.

What does MyNYP.org offer to patients?
MyNYP.org is patient controlled and offers the individual the ability to consolidate and organize a range of medical information including medications, surgery reports, hospital discharge instructions, laboratory, radiology and EKG results, immunization schedule and history, allergy information, doctor and insurance information and emergency contacts. The health data provided by MyNYP.org is annotated with customized explanations to help patients understand their medical tests and procedures.

The patient then can move the CCR [continuity of care record] created from the Amalga database and store it in HealthVault if they want to. If the data don’t go to HealthVault, the CCR is not retained, NYP continues to keep the data in the orginating system. As soon as results are available, they are available to the patient. We don’t hold the information. Once you’re discharged from the hospital, your results will be available upon discharge. In our experience, the fact that patients can just view their data and have access to that data is so stunning to them that that alone causes a thrill for them.

Using MyNYP.org, patients can coordinate doctors' appointments, develop a directory of physician contacts, manage their children's health records, comply with school and childcare-provider health record requirements, give custodial access to primary care physicians and search for specialists.

What does this interface look like?
If you look at what the CCR is, it reads like a narrative. First, you get a list of all of your hospitalizations. You then select the visit; it’ll show you the data available in that visit and you can click on a particular piece of information, like an EKG, or you can just scroll through it. It’s very natural for the patient.

Our vision is that we give you the information and you store it in HealthVault. Patients should pick a PHR they like or that’s relevant to their particular disease and hopefully through this ecosystem that gets created, patients will be able to move in between those elements.

What percentages of the patients you talk to adopt MyNYP.org?
We recently did a survey of patients concerning MyNYP.org. The results were stunningly positive. More than 80 percent of the patients thought it was great, and 100 percent said they would recommend it to other patients. We launched our PHR last April to a limited set of patients. Since Fall 2009, we’ve opened up to everybody and been actively enrolling people. We had over 5,000 enrollees three weeks ago so it’s been a very steady incline of hundreds of people week after week but I can’t give you a percentage at this time since it’s so new.

How do you think that patients’ use of MyNYP.org increases their investment in their health record and/or health?
We are a tertiary-care facility so a lot of patients that come here don’t stay here and what we see is that patients that need to come back, after their heart surgery for example, and primary patients with chronic disease respond positively to the system and find it very helpful to the coordination of their care. I think the other patients find it reassuring that they can view their data.

How engaged do people get in their healthcare, that’s a big question. I believe that NYP felt that we should do this is because it is the patient’s data, it’s not our data and we want them engaged in their care and this is one of the many things we can do to help foster that culture in our country instead of having the healthcare system be a paternal-type figure in this country.

What features do patients utilize/appreciate the most?
We made a real effort to make sure there were educational materials available to patients so that they wouldn’t be overloaded with what they wouldn’t understand. I think patients like that they get little pop-ups that will give them some glossary terms. In terms of information, they love EKGs and find that the most interesting. I think they’re happy to have their discharge medications and their discharge summaries. Those are the things they seem to response to the most.

What advice do you have for anyone thinking about employing this sort of technology?
It costs less money than people think going with the HealthVault instead of developing a PHR system of their own. We purposefully kept it patient-controlled because of security issues. By staying away from a lot of the complexities, we were able to do a lot for our patients in terms of taking control of their care. I would encourage people to go ahead and take on these initiatives because the patients really respond to them and it doesn’t have to be as expensive as they might think.