Welcome to Patient Portals part one. I'm Kelly Gleason, I'm an assistant professor at Johns Hopkins University School of Nursing. I also teach in the Department of Health Science Informatics here working alongside Dr. Lehman. So, I was a medical surgical nurse by training and it was my experiences as a medical surgical nurse working with electronic medical record and the data that went into it, and then came out of that should drive clinical decisions that made me so interested in clinical informatics. I then went further with this really heavily leveraging electronic medical record and tools within that electronic medical record for research working very closely with Dr. Lehman. Through others, I've learned that the principles of clinical informatics are really essential to understand. Well, you were introduced earlier to Kotter's eight step model for change. I'm going to be discussing in this part the first two components of the eight step model for change; creating a sense of urgency and building a guiding coalition. Now, because I'm going to be talking about these two in the context of the Patient Portal, I want to take a minute to explain the Patient Portal. Now, the Patient Portal is a web site. I would call it a website that's closely linked to electronic medical record that's patient-facing. So, for example, if you were to go to an appointment with your provider and leave the appointment, you could see on the Patient Portal details about that appointment, including when it was in a prescribed medication, and you can even, in some cases, see the notes that were left by your provider. If you wanted to make an appointment, you could make it through the Patient Portal and communicate back and forth if you had a concern about your prescription. Again, you could go through the Patient Portal. It's a patient-facing part of the electronic medical record. Now, the personal health record, I think it's important to take a minute to define. The personal health record is becoming increasingly more common as we realize the complexities of the health care system and that really the patient best knows how they're doing. That seems pretty logical, right? That the best source of information will come directly from the patient. In some cases, patients have a diary that has lists of their medications or allergies or past surgeries, medications that they've been on before. In some cases, when patients, for example, have a Foley catheter at home, they might also document their intake and output through this personal health record. In some cases, people can use the Patient Portal as their personal health record. So, a Patient Portal can fit underneath the umbrella of a personal health record, though you can have a personal health record that's not a Patient Portal. So, what was the need? Now, I'm going to be discussing about a system that we developed here, specifically around using the Patient Portal for research. I don't know if you've ever been a part of research recruitment either as a patient, as a recruiter, as somebody leading a study, but it is very, very difficult to recruit for a study. It is difficult to find patients who are eligible for your study. Let's say that you're looking for a specific disease in a specific age range and it's difficult to locate where those patients are. Sometimes patients want to be a part of study but they have some criteria that's missing, and it's frustrating to receive an invitation thinking that you might be eligible for a trial, and then realizing that you are not. Again, and recruitment's also very expensive, it usually heavily delay studies. Now, we have this amazing power in electronic medical record to identify patients who are likely eligible for the study using criteria that's available and documented in the electronic medical record. So, let's say that we're looking for people with congestive heart failure within the ages of 45 to 50, who also started medication, let's say, amiodarone. You can find that out through the electronic medical record, and then using the Patient Portal, which allows you to send messages to patients that they can receive through the Patient Portal. You can send invitations to people who you know are eligible. So, you can see why this makes sense. Now, the traditional form of recruitment, however, was very heavily that you had to go through the patients provider. Now, let's think about that. If you were interested in a study and you found out that you had to go through, that you could only find out about it if the provider decided whether or not you're interested in it. Well, what if that provider didn't know that you had a specific concern, or what if you're seeing five different providers and one provider decided that you couldn't, and so you could say that you didn't have an access to a study. There's lots of considerations in this. So, what we first did to make Patient Portal messaging for recruitment go live was to create a sense of urgency. We described these data. We described how long recruitment was taking, how expensive it was, how we were wasting certain patients times who were receiving study invitations, then realized that they weren't eligible because the criteria was a catch all rather than being able to focus in on people who had criteria, meaning that they were likely eligible for this study. We were also able to create a sense of urgency that this is not what patients didn't want study invitations to be first through their provider. They didn't want to only find out about a study if their provider decided that they should find out about it. They wanted to have the choices to see that study for themselves and then decide whether or not they're interested. We also built a guiding coalition, and I can't explain how necessary this was. Who's on your coalition? Having the coalition? We had administrative leadership from up top. Physician leadership saying that this should happen, that we want this to happen. We had nurse leadership saying that this is what's right for patients, that were happy to be a part of it. We had patient advocates who were also excited about the idea that they will be able to see the study invitation and decide for themselves. Now, as I talked about guiding coalition, it was an interprofessional group. Now, I can't even stress how important it is in health informatics that you have an interprofessional group. The nurse knows what the nurse documents and what the accuracy of that data is and how they use electronic medical record. The physician knows what they document, how they interact with it. The patient, the patient knows how they use the system and what they see as the output and what the accuracy of what was charted about them is in comparison to what they've actually experienced. The informatician knows how all this information comes into play and how to best structure the information, and then shoot it back out so they can drive decisions. All of these people are necessary. You can not have a successful health informatics project, and I'm very convinced about this, unless you have everybody on your team and that's multiple perspectives. You definitely need the clinician perspective. You need the informatician perspective. The computer scientist. I find these to be at the same table talking together and seeing themselves as equals. Now, that was just part of the story. We're now going to discuss a very important topic, resistance to change in health IT and how to overcome that resistance. Thank you so much for listening.
