Slowly the concept of Electronic Health Records (EHR) is gaining ground. However, not without many difficulties and an amazing silence from the side of the customer/patient.
Josh Seidman from PCHIT asked a very important question: “How much of a prerequisite is an EHR for implementing a PHR?” Absolutely, I would say, there is none without the other.
A couple of years ago it was deemed necessary, at least in the USA, to split the pure medical from the personal part, the so-called personal health record (PHR) (see Tang et al.). In my view this has been a very wrong decision. In stead of implementing a total record, including all aspects, the discussion has now begun how to link one with the other. It seems the world upside-down.
Allow me to give you a small personal example.
About 2 years ago I was diagnosed with a haemorrhoid (although located outside the rectum), but during surgery it became obvious that it was something else, to be diagnosed as a b-cell Non Hodgkin. 4,5 long months of discussion and errors followed. In August 2006 I started 6 rounds of chemotherapy and the tumour disappeared nicely. However, after the last round, the PET scan still showed cellular activity in the colon. Although physical examination came out clean, radiotherapy (extended, as there was no specific location) was strongly advised. I refused, for the time being. At the next control, 3 months later, the PET scan still showed the same cellular activity.
I then asked if this could be due to a restless colon. This was encountered with the question if I did have such a condition as a restless colon, to which I answered that indeed I did, ever since I was a very young child. My oncologist had to admit that it could also be the explanation of what was seen on the scan. But nobody ever asked me about my past, so nobody knew about that condition. Had I not taken position, I would, by now, have been suffering from quite some devastating side effects. An EHR, maintained since my birth, would have helped immensely.
However, as the condition never has caused any serious medical problems, it would have been an anecdotal part of the record, i.e. the part which is now called the PHR. This shows how important the combination of the two is. Personal information from the patient does not make any sense without it being linked to all medical data, on the other hand, medical data can be much better explained, when also all “anecdotal” information is known.
Having the two combined will also prevent a discussion which certainly will come up in the near future: in which part will data of monitoring devices be located, EHR or PHR? Especially since quite some of these data will have narrative aspects. In case a specific blood pressure reading is out of boundaries, it would be very helpful to know that this person was told some very bad news or had other stressful experiences at that specific day (or period of days).
The consequence is, that there are now a number of companies and institutions offering PHRs. The argument in all cases is, that the patient is offered a tool to manage his own health. However, all input has to be delivered by the user, which means that there are no, or at least hardly any, direct links to medical information, like lab reports, exam results, consultation reports, prescription information.
An EHR should be a repository of all health and care related aspects, including observations from nurses, homecare providers, physiotherapists, etc., as well as over-the-counter-drug use and personal and lifestyle observation from the patient himself. Only then it can serve its purpose. And only then it will become one of the main tools in making care as well as cure more effective, also cost-wise.
However, this repository will effectively be (partly) a collection of links. Therefore EHRs should comply with all the necessary standards, which will also make it a real portable tool. For once it complies with all standards, any person who will have access to it, will be able to understand what is in there, independent of his native language.
In the longer term, the EHR should become a starting point for delivery of information, relevant to the patient’s condition and circumstances. That also can only be done if based on the proper (ontology) standards.
In the beginning of this article I expressed my amazement about the silence from the side of the consumer. The professionals, the organisations, the governments have been very silent about the EHR becoming a fact of life within the very near future. We will have to take upon us the challenge of informing the citizen and make him/her aware of the facts, the responsibilities and the consequences. That is why we at ICMCC are working at setting up an international protocol on patient record access.
However, we will have to get the patient involved in this process of raising awareness. Otherwise it will be a lost case. Therefore we started the Dutch en UK Record Access discussion sites. Hopefully we will be able to start similar sites for other countries.