Defining the Role of the Personally Controlled Electronic Health Record
Australia, in line with a number of European countries, is currently investigating innovative use of Internet technology to improve access to patient information by the broader group of healthcare providers involved in delivering healthcare to an individual. To date most exchanges of information occur across health teams, for example the sending of a discharge summary from the hospital to the general practitioner. This might be characterised as an inside-out approach and has been problematic in respect to ensuring relevant information is sent in a timely manner and is readily available when the patient presents. New approaches seek to complement rather than replace traditional exchanges of data and focus on using the patient as the ‘aggregator’, able to bring information themselves to their next healthcare interaction. This might be thought of as an outside-in approach.
This outside-in approach is often referred to as the Personally Controlled Electronic Health Record (PCEHR). In its most simple form it may constitute basic emergency medical information that the patient carries with them (like an electronic ‘Medi-Alert’ bracelet). This could simply involve information such as allergies and might come from the doctor’s records or, at the most basic level, could be entered by the patient.
A recent survey by the health computing company CSC has provided a valuable and extensive report of Australians’ attitude to shared health records. This report reveals that most Australians believe that the medical information in a shared record needs to be reasonably comprehensive. Data that those surveyed considered important include current medications (suggested by 97% of the surveyed population), test results (96%), allergies (98%), diagnoses (97%), vaccinations (98%) and medical procedures (96%).
A shared record that contained this more complete medical information would be much more useful to a treating doctor than one with only minimal data – and would be more likely to be viewed by the doctor. Conversely one that the treating doctor did not feel would contain information that made it worth accessing (and consequently didn’t access) would be of no clinical value. It seems that there is a strong consensus that a shared medical record needs to contain reasonably comprehensive healthcare information in order to be clinically useful.
Beyond a value in emergency situations the PCEHR represents an important mechanism to provide information about the patient to a new doctor who has never seen the patient before.
Another function of a PCEHR may be to share care plans with the patient (particularly those with chronic conditions) and it could also accept and store results of electronic monitoring that these patients perform at home (eg blood pressure readings, blood sugar measurements, peak flow values etc.).
The PCEHR could provide a secure platform for doctor-patient electronic communication. E-mail communication is becoming ubiquitous and a secure environment for electronic medical communication could be valued by patients and useful for doctors (though this may require a review of remuneration before it could become widely used and clinically useful).
Doctors recognise the need for a shared medical record and favour a centralised shared medical record that they can access. However they may underestimate the potential for the patients’ need for control and their requirement for privacy to impede implementation of a centralised system.
Privacy advocates express significant concerns associated with the proposal to create centralised medical records. Of the general population 24% of Australians are against electronic health records and more than half of these are strongly against. This represents a significant body of concern that is unlikely to evaporate.
Of those who accept the need for a shared record, most want to control who can see their health information and to dictate what part of the record they can see. While most Australians (84%) wish their current healthcare providers to have access to their shared record the vast majority (89%) also want the ability to select which (other) healthcare providers can view their information. They do not want to give access to health providers who they don’t know or have not yet visited.
It is difficult to conceive that such control could be achieved unless the patient is actually in control of the shared electronic record. In this case the PCEHR becomes the principle mechanism whereby a patient’s medical information is provided to all the patient’s healthcare providers in various locations (with whom the patient wishes to share the information).
This concept is not entirely novel as patients have for many years been given copies of X-ray images by private radiology practices and have often been given copies of discharge summaries. These practices have proved acceptable to patients and effective for doctors.
It is important to understand what people want, and what they will accept, before committing to a solution. This is no easy task as the potential systems are so very different from anything that is available today. We can’t confidently rely on what patients say about a system that they have never experienced.
Recent Commonwealth initiatives to develop and trial a number of Personally Controlled Electronic Health Records are a welcome development in this regard.
The Barwon Region has a long track record of e-health development including Barwon Health, the Geelong GP Association and others. This region has begun trials of the clinician-developed Medenotes patient controlled health record in an attempt to address the issues that have been raised in this paper. Barwon Health is planning to use Medenotes to provide patient controlled obstetric records for all pregnant patients.
Personally Controlled Electronic Health Records represent a milestone in the transformation of healthcare delivery and the possibilities for innovation are enormous.
This next wave of development will provide a critical platform and will maintain Australia’s position as a global leader in respect to the delivery of safe, high quality and cost effective healthcare.
A/Prof Charlie Corke
MB BS, MRCP(UK), FCICM
Senior Intensive Care Specialist, Barwon Health, Geelong
A/Prof Charlie Corke is the founder and current Marketing Director of Medenotes.
- CSC Health Care Research Report - A Rising Tide of Expectations. Australian consumers’ views on electronic health records. http://www.csc.com/au/insights/51406-csc_health_report_a_rising_tide_of_expectations
- Shared Electronic Medical Records – 2010. Australian Medical Association. http://ama.com.au/node/5472
- Policy Position eHealth Data and Health Identifiers. August 2009. Australian Privacy Foundation. http://www.privacy.org.au/Papers/eHealth-Policy-090828.pdf
Posted in Australian eHealth