As we’ve noted countless times in this space, EMRs aren’t going to get any better unless vendors and doctors communicate freely. But what about catering to the needs of patients. But given that by Stage 3 of Meaningful Use, EMR data will need to be accessible to and available for comments by patients and caregivers, it’s time patient needs were taken into account.
In that spirit, here’s my list of a few EMR features that might benefit patients and their caregivers. Bear in mind that this is me speaking as a patient and family caregiver, but perhaps that’s a good thing.
Patient data needs
* Multiple views of the data: Doctors are used to standardized reports, but patients and their families will still be learning the game. Patients should be able to do pull data by history, by current status, by lists of drugs, allergies and other key factors affecting current care, as well as by a simple overview similar to patient discharge papers. It should be possble to pull down these reports into Word, PDF, Excel and other popular formats for re-use.
* Access to contextual data: Being able to fit data into a larger context is very helpful. As a caregiver, I’d want to know if the pulse ox number my asthmatic son was low relative to other asthma patients, particularly pediatric asthma patients. I’d also want to compare his current number to numbers from the past, preferably in easy-to-read chart form.
* Links to medical information: If I’m reading a report on my care, and I run into medical terminology I don’t recognize, I should be able to pull up a pop-up window and search for the definition of that term. I should also have access to full-length reports on my condition — from validated sources such as WebMD — to give me a broad understanding of my care.
* Ability to comment on data and notes: While I realize this could become very time-consuming for doctors, it might be worth the trouble to give patients the ability to comment on elements of the data or notes. (A Microsoft Word-style comment function would probably be sufficient.) To contain the time doctors need to spend, comment functions could be constrained to medical notes and other areas where impressions could be clarified or corrected — rather than the entire EMR data set.
* Portal: Portals, of course, are on the way regardless. But I wanted to underscore, as the caregiver to two chronically-ill family members, that accessing data through an organized interface will be a welcome method for skimming key indicators and raising the questions I need to ask doctors.
* Mobile access: Another obvious one. Patients are as likely to access data on the road as physicians are. Patients need an adequate mobile app which offers a reasonable amount of access to key EMR data on a real-time basis.
Readers, what other types of data access do you think patients and caregivers need to participate effectively in care?
As a UX designer, I understand your point of view but are all those points things that all patient want or maybe thing a part of the patient want. That would make an interesting study.
From my point of view, we should start by having access to information and not data (as you pointed out in the third point). Data is an information that wasn’t vulgarized (popuralized) (meaning that it isn’t understandable for most of the patient). Even if you use links to clarify certain therminologies, it can easily back fire. For exemple, if someone search for a type of cancer that his doctor has diagnosticated, even if the doctor tells him that it is still young and extractible, the information he will receive from the link will still scared him AND his family.
I really liked reading this. It has a lot of good ideas and it is rare to read something that concentrates to satisfy the patient’s needs. (sorry for my english)
[…] What do Patients Need From EMRs? […]
[…] What do Patients Need From EMRs? […]
Usability-oriented designers of the next generation of EHR, PHR and HIE platforms are finally recognizing that for physicians and patients needing to efficiently view and share patient-generated clinical data, the user interface must display contextual data in “easy-to-read chart form.” Unfortunately, what is still being overlooked is a clinical data management problem that physicians have been struggling with since medical computer system development began at Massachusetts General Hospital over 60 years ago. (1)
The problem is that existing EHRs, PHRs and HIE platform portals are still using a user interface with infinitely variable reporting formats displaying diagnostic test results as incomplete, hard to read, fragmented data.
Ultimately, the efficient viewing and sharing of cumulative results by physicians and patients will require the development and adoption of a clinically intuitive, standard reporting format that can display the results of all 7,500 available tests as integrated, actionable information. Overcoming this major health IT interoperability challenge will also support the five broad goals of all three stages of Meaningful Use, which include engaging patients and their families and improving care coordination, quality and patient safety. (2)
(1) http://www.seaislandsystems.com/Hardhats/HistoricDocs/OctoBarnett-History.pdf
“In papers devoted to the problems of hospital information systems, there is often a strong feeling of deja vu. For the past decade it has been repeatedly claimed that computers will be of enormous usefulness in patient care and in hospital practice. On innumerable occasions our old men have dreamed dreams and our young men have seen visions. Yet, when we critically examine what is actually being implemented in our hospitals, we are most impressed by the number of slow or halting starts, and the number of projects that have been abandoned or in which the objectives have been greatly watered down. The discrepancies between the visions and the realities are startling.
What is the cause of this state of underachievement when the need is so great, and the technology supposedly so powerful? This is a significant problem which merits considerable analysis. It is our thesis that a considerable portion of the difficulty involves the recognition and solution of the “interface” problems.
There are three important classes of interface problems: (1) the interface of the user with the computer terminals; (2) the interface of the programmer with the computer system; and (3) the interface of the hospital with the development and implementation of a computer system.” (See: Barnett GO, Greenes RA. Interface aspects of a hospital information system. Ann. NY Acad. Science. 1969;161:756-768.)
(2) http://www.nationalehealth.org/HITWeek-Standards (September 13, 2012. Health IT Week Webinar Series: Standards & Interoperability Framework)