Put the Personal back into our Health Records by Adding Advocacy

My personal wellness tool (e.g. Fitbit) tells me to track things like how many calories I eat, how much water do I drink, how many steps did I get today, how did I sleep? But when I visit my physician, I summarize all of this wellness activity into a single answer to a single question “Are you maintaining a healthy lifestyle?” Standard answer: “Yes, I am doing the most of what I now to be the right things most of the time”. And guess what? I probably give them the same answer whether I am getting 10,000 steps a day and 8 hours of sleep or 2,500 steps and 3 hours of sleep. I know these factors are health risks and I also know that giving this logical yet slightly misrepresented answer to my physician keeps him from telling me that I need to sleep and walk more. Wouldn’t it be nice if we each had our own personal advocate responsible for communicating my health missteps directly to my physician? This sharing of personal data about known risk factors has many barriers that an advocate would ignore. Like taking on that grumpy nurse glaring at you over her glasses as she reads your medical history and states “This is not good for you because…” Yes, I definitely see a need for advocacy around getting individuals more engaged in their personal health.

Advocacy. It can help drive patient engagement and it’s a hot topic my circles. It’s more than just tracking steps or how many times I work up last night. It’s driving access to a job that pays enough to eliminate working 16 hours a day. It’s helping impart the risk to a child who has not had a pertussis vaccine when there is an outbreak of whooping cough in the community. What if my personal advocate is really just the transforming layer between what my health record exposes and what my health could be?

This week included many hours working on an implementation model for a Population Health Management project. The specific task is to define the clinical and social “triggers” and determine the impacts of specific clinical scenarios with the clinical operations areas. The challenge is that many of these triggers come from the inclusion of social and safety factors for that patient.  Here is a real scenario: A woman of child bearing age with housing security may be considered healthy and her pregnancy itself may not indicate a significant risk as long as she keeps to the prenatal care plan. But if she is homeless, we have a “trigger” and her pregnancy is deemed a much higher risk because we know that this type of social determinate has a very real impact on that clean and tidy prenatal care plan we want her to follow to ensure the delivery of a healthy baby. She might actually lack shelter completely and the fear of Child Protective Services taking the baby when born can be a significant barrier to her even seeking health care.  Discussing this “particular “trigger” led us down the path of “what database field can we put this information into if we can even get it” and the inevitable “IT, you make this so hard…” discussion. Why? Because personal information is designed to come from the person and we are trying to indicate a future health outcomes driven by non-medical factors.  The reality is that a social worker or a community advocate who interacts with her during a home visit may discover that she is actually living in a vehicle in the driveway of her step-brother’s apartment building. This very personal scenario clearly was not documented and indicates a risk to the woman’s health that was not disclosed or known.

The exploration into this topic sparked a new deeper understanding on the difference between medical records, health records, and personal health. In the health care industry, we have reoriented the focus from the personal health to the patient data we can use to ensure we bill appropriately and manage expensive diseases. Not to suggest that this is not important too. Yet, when I read this disheartening article advocating giving access to health records to everyone BUT the patient, I realized that twisting the focus back to the patient with an advocacy spin is the next evolution in patient-centered care, but advocacy HAS to be seen through the personal lens.

Let’s go back the basics. An electronic medical record (EMR) is a digital version of a medical chart with patient information stored in a computer. Remember those BIG folders your doctor kept in cabinets that represented each patient’s record according to that doc? It’s that. An electronic health record (EHR) is a digital records of health information. Sure, it has all of your medical record, or your whole EMR. EHRs can also contain other relevant information, such as insurance information, demographic data, your data from your medical devices such as a glucose monitor, and other information that may factor into your health status. For those of us in the IT industry, the distinction between these is not new. We have implemented EMR and EHR systems for years. In the beginning, EMR’s were in the provider space and Payer’s had EHR’s. But soon, it was recognized that the EHR contained a “richer” data set and could be used to integrated multiple encounters into a single view. Every major software company who has a healthcare solution has an embedded (probably proprietary) EMR or EHR solution built in. Hospitals and Physicians create and consume them. Health information exchanges (HIE’s) are built around them. Health Insurers validate billing from them. But do any of us really know what we want to know what the EHR looks like?

This week’s challenge of figuring out how to design a solution to capture information about these non-medical factors led me to form the following question: What if instead of calling it an Electronic Medical Record, we labeled it Personal Health Record so that all health service providers and the patient would better understand the impact of these risks? Ta Da!  

Figure 1

Then I realized… This already exists. The health care industry defines a Personal Health record (PHR) as a record controlled by an individual patient .  The source of the information in the PHR may well be an EHR or you might enter the data yourself.  PHR’s  have been around a while. In the 70’s,it was simply a characterized as the idea that “notes on one’s health” were basic references to provide historical context. But by the 90’s, the “P” was more likely to represent “Patient” and represented a shift to “patient-centeredness”.  Hence the resulting swap of the “P” with “E” for Electronic. However, Patient and Electronic seemed to reduce the idea that it was personal information that might have suggested factors beyond medical needs. The idea of Personal didn’t go away completely, the idea of a “Patient-held health record” has been researched and studied and contributed to the whole idea of patient-centered engagement. However, the drive for the EMR/EHR to play a significant role as the core to disease management took the spotlight and PHR took a backseat as the industry struggled to incorporate the management of specific diseases into clinical operations.  During this time, the concept of the PHR evolved to “data managed by the patient”. If I haven't bored you enough on the history of EMR/EHR, read this: 

"Electronic personal health record (PHR): a private, secure application through which an individual may access, manage, and share his or her health information. The PHR can include information that is entered by the consumer and/or data from other sources such as pharmacies, labs, and health care providers. The PHR may or may not include information from the electronic health record (EHR) that is maintained by the health care provider and is not synonymous with the EHR. PHR sponsors include vendors who may or may not charge a fee, health care organizations such as hospitals, health insurance companies, or employers." --Characteristics of personal health records: findings of the Medical Library Association/National Library of Medicine Joint Electronic Personal Health Record Task Force. [J Med Libr Assoc. 2010] 

That version actually states "not synonymous with the EHR"! Today’s care management software solutions do NOT make it easy to capture and manage information about the patient that is social or safety based because there were designed during a period where a PHR was being defined as patient-owned. Since we know managing our own personal health data is not simple for many reasons (have you TRIED using MyChart???), the industry is left with an information gap. A physician may capture an average sleeping time of 4 hours a night in a patient’s medical record and note that this lack of sleep is a risk factor for impaired control of blood glucose. What if they captured the reason for the few hours of sleep was due to the patient having three part-time jobs required to afford the food and housing needed each month? If the patient had an advocate looking at these factors, the path to address this outcome might look different. That advocate may connect the individual to specific skill training opportunities that would help them transition into a higher-paying role at an existing company that means they quit one of their other part-time jobs.

Figure 2

Let’s start thinking of this advocacy in terms of the impact to both the known health information (EMR/EHR) and a patient’s personal health as the Personal Health Experience. That experience includes a role for advocacy that has to be taken into consideration. If we layer this between the doctors and ourselves, we might find that our elusive personal health is much more meaningful. In Figure 2, the relationship of the various models shows that advocacy might be a key link. Not to suggest that the challenge of making this link is easy or without it's own challenges. But we might even find a way to achieve a healthier lifestyle that doesn’t just require 3,000 more steps a day!