Along with everything else in the world, the Information Age is changing the way health care is being dispensed. For the more traditionally oriented this is a somewhat bitter pill to swallow. For others it’s like a new lease on life.
In 1597 English philosopher, statesman and scientist Sir Francis Bacon pronounced: Ipsa scientia potestas est. Knowledge itself is power. No more has that been more manifested then in the traditional doctor-patient relationship.
There was a time when the doctor’s will, and word, took precedence over any other source of treatment or patient input. With the availability of information being just a mouse click away the move is on for patients to re-claim what is rightfully theirs.
Namely setting the agenda for their own health and wellbeing.
One where a patient seeks help from a doctor, or healer, whose decisions were religiously adhered to in what many came to view as pure paternalism.
A model where unchecked physician paternalism abides, or where unlimited patient autonomy takes precedence, would quite rapidly produce revolt. Instead a more communication based ‘caring and sharing’ model has evolved that has been called Participatory Medicine.
As a major revolution it has spawned the creation of a power force, and concept, called the ‘e-patient’. The principles are even being applied to situations where care is given with some revolutionary, and disruptive, ideas that have affected the design, and build, of facilities.
As with everything else in the world the conventional doctor-patient relationship has undergone quite massive transformation particularly in the ‘prescription’ of information. The more traditional (some would say paternalistic) approach saw any sharing was largely to encourage a patient to agree with a particular course of action rather than putting forward an alternative view point.
The first real challenge to the ‘asymmetrical’ approach came during the last 20 years with the push for a more active, autonomous patient-centered approach. One described as where "the physician tries to enter the patient’s world, to see the illness through their eyes.”
More recently the trend, as described by the president of the United Kingdom-based Institute for Healthcare Improvement Donald Berwick, has created “the experience (to the extent the informed, individual patient desires it) of transparency, individualisation, recognition, respect, dignity and choice in all matters, without exception.”
The best medicine
There are naturally degrees of participation based on a person’s own capabilities, confidence, access to information and ability to make informed decisions that may even counter those being given by the so-called specialist.
At the more affirmative end of the spectrum sits a new phenomenon known as the ‘e-patient’. The ‘e’ originally stood for electronic (being the main source of information access) but has since branched out to encompass ideas such as equipped, enabled, empowered... and even expert.
From an e-patient perspective, they have equal footing with doctors in the healthcare process. The concept covers those looking for information for their own maladies as well as family, or friends, who use the Internet and digital tools to ‘sleuth’ out information for the patient.
The perceived, and positive, side effects of e-patient involvement are better health information and services and different (but not always better) relationships with their doctors.
The United States-based Empowered Patient Coalition says the symptoms of properly functioning patient-centric care model include:
- Proper communication and full information sharing taking place.
- One provider serving as the ‘gatekeeper’, ensuring that everyone who should be involved is kept informed.
- Care being well coordinated, particularly when there are multiple providers in both the pre and post operation situations.
Globally e-patient advocacy has become a growth industry with a swathe of the ‘converted’ sharing their own insights, and experiences, to help people in similar situations make the right decisions.
One of the higher profile ‘practitioners’ is Dave deBronkart known around the world as e-Patient Dave. Star of stage, screen, conferences and cyberspace his core message is about the importance of patients being involved in their own information. As such he has become a proponent of participatory medicine.
“While patients usually are not doctors, they can ask questions, take positive action and try to understand as much as possible about their condition. In this way, they become partners in creating and managing their own health.”
He compares the cultural shift happening in healthcare to the women’s movement of the 1960s and 1970s where a group of people, who were previously thought unable to do something, gained insight and information and agitated for change.
“When constraints are removed, new things become possible. That’s what we’re seeing now with digital health information being available to patients.”
