BHF360: Achieving a person-centric health ecosystem

All over the world, patients often experience the feeling that they are not respected in their encounters with healthcare personnel. The International Society for Quality in Health Care (ISQua) have made it their business to document what a person-centred, rather than diagnosis-centred, healthcare service is, its benefits and how to make it happen.

The world is listening to what they have to say.

• Health workers may be faced with claims for compensation if they dispense the wrong medicine. But a doctor is allowed to carry out a gynecological examination without exchanging so much as a word with the patient along the way.
• There are HIV-positive people who stop going to the hospital to get the vital medicine they depend on in order not to develop AIDS. They know they are risking their lives by not collecting their medicine, but the mechanistic treatment offered at the clinic often feels so toxic that they choose to disconnect from healthcare.
• It is a huge challenge that many women opt out of professional care for pregnancy and birth. When asked why they choose to give birth at home, they reply that the paternalistic organisation of the health service is unsatisfactory and does not treat them respectfully. They would rather take the risk of giving birth at home.

Authors of the report

“I have to admit that I didn't feel very confident when I started the work together with ISQua on what was to become a white paper on person-centered care,” says Professor Gro Rosvold Berntsen. Berntsen led the work on the report, written in collaboration with seven other patient partners appointed from both low- and high-income countries and from widely different contexts.

From the African continent, Professor Morgan Chetty (South Africa) and Louis Ako Egbe (WHO, Liberia) contributed. The white paper, entitled Person-Centered Systems: From Theory to Practice, was recently presented at ISQua’s international conference in Brisbane, Australia.

“What surprised me most,” says Berntsen, “is that although we had vastly different backgrounds, we quickly had the same understanding of person-centred care (PCC) from day one. Healthcare’s neglect of the patient voice and what matters to the patient is a universal problem.”

We need person-centred care

Coming from Norway, one of the world's richest countries, Berntsen worried that PCC may be something that is perceived as a ‘nice-to-have’ and not a ‘need- to-have’ in low-resource settings.

“However, I was quickly corrected by my colleagues from low- and middle-income countries: Especially in low-resource settings, we cannot afford NOT to work person-centred. Working with the patient ensures that we are targeting our scarce resources at issues that matter most. Secondly, in low-resource settings, often complicated by a backdrop of violence and conflict, patients are more vulnerable. They need to feel seen, heard and respected for who they are."

She adds: "PCC ensures that dignity and respect are part of every encounter, which is even more important in vulnerable situations. Today's health service is set up to work reactively, often without seeing diagnoses in context. This is something that, in the worst case, is wasteful, and can also push patients away from sorely needed care and result in more illness.”

A basic tenet of PCC is to support the person who ‘owns’ a body to self-manage the health of that body in the best possible way. The patient him/herself is both the most effective and the cheapest preventive care provider. But, if what a professional suggests does not align with what the patient understands as important and feasible, there is a risk that they might not follow the professional advice.

Consider a situation where a patient’s health management, such as frequent clinic visits that require time off from work, might jeopardise their source of income. Unless the health provider can tailor care to the person’s situation, the patient might withdraw from care, and like falling domino pieces this may have consequences for their long-term health, family and community. The resources set aside for that patient in the clinic are wasted. It is a negative spiral. Partnering with the patient, building trust to ensure that care and life-issues are not in conflict, is not only the right thing to do, but also cost-efficient.

Supporting patients to manage their own health in a way that is both meaningful to them and supported by professional knowledge simply provides better results, because the most important resource, the patient, is fully onboard.

A paradigm shift

The ISQua white paper on PCC, presented in Australia, is a kind of ‘instruction manual’ for what it means to work person-centred. All over the world, people identify with the system flaw that this report addresses, a system error that has grown in strength as the health service has achieved ever more wonderful medical results and can treat ever more disease.

Because the more specialised the health service becomes, the more skewed the distribution of power between patient and practitioner becomes.

“In a curious way, both the patient and the healthcare worker lose their real identity, and are assigned roles based on the organisation of the healthcare service. In the role of ‘patient’, many individuals report that they are not included in decisions about their own health, and often they do not get the right help for what they really think they are struggling with. Some also say that they are exposed to experiences that are both devastating and traumatic,” explains Berntsen.

Guide to solution

The ISQua white paper is a guide for anyone who wants to learn what person-centred health services are and what they contribute to. Previously, through research in Tromsø, Berntsen documented that patients who receive person-centred services live longer; 43% of the frail elderly who received person-centred, holistic and proactive health services from an interdisciplinary treatment team lived longer than the patients in the control group who received normal Norwegian health services.

“The research results are so clear that if person-centred healthcare were a medicine, it would be unethical not to give it to everyone,” Berntsen adds.

Since 1934

In the ISQua report, Berntsen and co-authors explain that person-centred healthcare is not a new idea. They found that in the literature, it was mentioned as early as 1934.

“There is no doubt that making person-centred services the norm in the health service requires major changes in legislation, organisation, funding, data and information systems, education and research. We must have systems that facilitate person-centred healthcare and that stimulate the various parties involved - from home care to specialists - to work together to achieve the patient's goals,” says Berntsen.

Many positive side-effects

“Unfortunately, there are many examples of how the health service should not meet patients, and much of this is simply due to the way we organise and finance it. If we want a person-centred health service, then this must be entered as an expectation and a feedback point at system level - something that both politicians and decision-makers must contribute to,” explains Berntsen.

While in the last 13 years she has used her career to document the effects of person-centred healthcare, she has also found several positive ‘side effects’: Patients experience better treatment and become less ill, healthcare personnel experience going the extra mile for the individual and therefore feel better in their profession. In addition, there will be reductions in emergency hospitalisations, which is a benefit both for patients and services.

“As long as the funding of the services does not stimulate person-centred work, then nothing will change. The aim must be that person-centred services are the logical choice, and are expected, measured and rewarded both organisationally and financially," Berntsen concludes.

This article was first published in BHF360 - a magazine from the Board of Healthcare Funders in South Africa. For more information, visit: https://bhfglobal.com/