Is it possible to standardise an ethical principal? Axel Wolf is leading the work on a European standard for patient involvement in person-centred care

Axel, you are one of GPCC’s researchers and you are involved in designing a standard, a term that may be unfamiliar to many of us. Could you tell me a bit more about this? I agree that standardising patient involvement and person-centred care may sound odd. Thus, I would rather say we are working on setting up structures for a work process with the aim to facilitate the co-creation of person-centred care. I see person-centred care as a combination of an approach, i.e. an ethical theory explaining the “why and how” as well as practical framework for the multi-professional team including the patient, i.e. a system and structure that explains “how and who” should do it.

The first standard that the technical committee which I am chairing has handled since the start about 2 years ago, is about patient involvement. It is called Patient involvement in healthcare – minimal requirements for person-centred care (CEN450) and is about defining the lowest level of patient involvement that may support a person-centred work procedure.

How, when and why did you come up with the idea of designing a standard? Already when GPCC was being formed, we had an idea about how GPCC’s person-centred framework could be standardised or systematised, not least because we had identified distinct components that were necessary for the design of clinical trials. Hence, early on, we contacted SiS with our queries and we had a dialogue for a couple of years regarding how we should proceed in order to achieve this. Meanwhile, our knowledge and evidence around person-centred care and person-centred work procedures increased, not least because of the 40-odd GPCC studies that have been conducted on a national and international level.

How is this work carried out? Within the framework of the European standardisation project, a European-wide technical committee was created. Its aim is to come up with a standard through consensus-driven discussions. In addition, all the participating European countries started their own national expert committees in which different stakeholders from health care organisations, patient organisations, employer’s organisations, companies and universities are included in order to collaborate on a standard that in turn is presented to the European committee.

Since Sweden initiated this work, the member countries have chosen Sweden to coordinate the work. Professor Karl Swedberg is the chairperson of the Swedish committee which to date comprises 17 different member organisations and companies who have regular meetings. I am the chairperson of the European Committee.

What do you hope this work will result in? We hope to achieve two things: the most important being the creation of a platform for discussions around person-centred care and patient involvement in Europe among all the participating organisations and stakeholders. The second part is obviously to create a standard that may facilitate patient involvement in health care.

We believe this standard can help health care organisations who want to apply person-centredness in their work procedures, as well as help local authorities and regions who will be able to use the standard as a basis for procurement of health care services. However, the standard can also be used in research and development in order to provide a guidance in defining patient involvement and person-centred care.

Where in the standardisation process is the project now? We have been working for the past 2 years on designing a work document. It has been through several revisions and discussion rounds between different participants on both a national and European level. In October, the document became an active work item through a vote by a majority of the European countries, which is an important step forward. We estimate that the document and the standard will be completed in about 1-1,5 years.

What has been especially interesting/instructive during the course of the project? For me, personally, it has been interesting to hear how the different participants talk and reason regarding the different conditions for patient involvement and person-centred care, and to witness the process of them achieving consensus. On a European level, it has been interesting to see which similarities and differences exist around the perception and prioritisation with regards to these issues. For these reasons I believe that perhaps the greatest value in this type of consensus-driven process lies in people getting together and discussing in meetings.

About Axel Wolf: Axel has a combined position at the Sahlgrenska Academy/University of Gothenburg and the Sahlgrenska University hospital as an Associate Professor, Researcher and Senior Consultant Nurse Anaesthetist in the Anaesthesia and Intensive Care Department. He has been affiliated with the GPCC since the start of the centre in 2010 and wrote his thesis in 2012 about Opportunities and barriers for person-centred care and its effect on hospitalised patients.

Photo: Cecilia Hedström