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12 Oct 2023

Be at the centre of your own health and wellbeing solutions

Health Care

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. The saying makes sense in a number of situations.  No more so than 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 is now viewed by many 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 ‘Patient-Centred Care’, or ‘Person-Centred Care’; in some countries it is called ‘Participatory Medicine’, and in some areas described within a wider concept of e-patient developments.

While the technology existed prior to CoVID-19 disrupting the world (from December 2019), on-line consultations between doctors and patients and the concept of the ‘e-patient’ rapidly became normalised. 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. 

 

Major shifts

As with everything else in the world the conventional doctor-patient relationship has undergone quite massive transformation particularly in the ‘prescription’ of information.

Previously any sharing was largely to encourage a patient to agree with a particular course of action rather than putting forward an alternative view point. 

Global business services group EY (Ernst Young Consulting) believe that patient centred care / person centred care / participatory health is reflective of a deep and profound shift in perspective around health toward well-being and wellness, greater convenience, flexibility, self-direction and personalised experiences.

But most importantly, the tools of participation in their own health care decisions open consumers to a world of alternatives that the emerging digisphere, social media and affinity networks will enable.

New entrants, new funding routes, ultimate choice and highly deregulated social constructs open new pathways toward health and wellness.

The first real challenge to the ‘asymmetrical’ approach came during the last 20 years with the push for a more active, autonomous patient or person-centred approach. One described in a 2019 thesis (Medical Students’ Perceptions of the Doctor-Patient Relationship) 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.”

Health Navigator New Zealand says that the widely accepted dimensions of patient or person-centred care are: 

  • Respect
  • Emotional support
  • Physical comfort
  • Information and communication
  • Continuity and transition
  • Care coordination
  • Involvement of family and carers
  • Access to care.

 

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 those commonly referred to as ‘Specialists’.

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.

 

Going global

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, blogging and cyberspace he is both a doctor and a patient having been diagnosed with life threatening renal cancer in 2009.  His core message is about the importance of patients being involved in their own information and decision making. 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.”

 

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Date Published: July 2018

Reviewed: September 2022

To be reviewed: September 2025