Patient involvement in health care - Minimum requirements for person-centred care

This document specifies minimum requirements for patient involvement in health care services with the aim to create favourable structural conditions for person-centred care.
It is applicable for use before, during and after the actual care that is provided by the care personnel.
This document is also applicable for use on a strategic level for quality assurance and quality improvement, for procurement, educational and supervisory purposes and as a guiding document for research and development projects in the field of intervention and implementation of person-centred care.

Patientenbeteiligung bei der Gesundheitsversorgung - Mindestanforderungen an die personenzentrierte Versorgung

Dieses Dokument legt Mindestanforderungen für die Patientenbeteiligung in Dienstleistungen für die Gesundheitsversorgung fest, mit dem Ziel, günstige strukturelle Bedingungen für die personenzentrierte Versorgung zu schaffen.
Es ist zur Nutzung vor, während und nach der tatsächlichen Pflege durch das Personal der Gesundheitsversorgung anwendbar.
Dieses Dokument ist ferner zur Nutzung auf strategischer Ebene zur Qualitätssicherung und -verbesserung, für Zwecke der Beauftragung, Ausbildung und Überwachung sowie als Leitdokument für Forschungs- und Entwicklungsprojekte im Bereich der Vermittlung und Umsetzung der personenzentrierten Versorgung anwendbar.

Implication du patient dans les soins de santé - Exigences minimales relatives aux soins centrés sur la personne

Le présent document spécifie les exigences minimales relatives à l’implication du patient dans les services de soins de santé dans le but de créer des conditions structurelles propices aux soins centrés sur la personne.
Il est destiné à être utilisé avant, pendant et après les soins prodigués par le personnel soignant.
Le présent document est également destiné à être utilisé au niveau stratégique pour l’assurance qualité et l’amélioration de la qualité, pour l’approvisionnement, la formation et la supervision, ainsi que comme document de référence pour les projets de recherche et de développement dans le cadre de l’intervention et de la mise en oeuvre de soins centrés sur la personne.

Vključevanje bolnikov v zdravstveno oskrbo - Minimalne zahteve za oskrbo, osredotočeno na posameznika

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6060 - Definitive text made available (DAV) - Publishing
Due Date
10-Jun-2020
Completion Date
10-Jun-2020

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SLOVENSKI STANDARD
SIST EN 17398:2020
01-september-2020
Vključevanje bolnikov v zdravstveno oskrbo - Minimalne zahteve za oskrbo,
osredotočeno na posameznika

Patient involvement in health care - Minimum requirements for person-centred care

Patientenbeteiligung bei der Gesundheitsversorgung - Mindestanforderungen an die
personenzentrierte Versorgung

Implication du patient dans les soins de santé - Exigences minimales relatives aux soins

axés sur la personne
Ta slovenski standard je istoveten z: EN 17398:2020
ICS:
11.020.10 Zdravstvene storitve na Health care services in
splošno general
SIST EN 17398:2020 en,fr,de

2003-01.Slovenski inštitut za standardizacijo. Razmnoževanje celote ali delov tega standarda ni dovoljeno.

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SIST EN 17398:2020
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SIST EN 17398:2020
EN 17398
EUROPEAN STANDARD
NORME EUROPÉENNE
June 2020
EUROPÄISCHE NORM
ICS 11.020.10
English Version
Patient involvement in health care - Minimum
requirements for person-centred care

Implication du patient dans les soins de santé - Patientenbeteiligung bei der Gesundheitsversorgung -

Exigences minimales relatives aux soins centrés sur la Mindestanforderungen an die personenzentrierte

personne Versorgung
This European Standard was approved by CEN on 10 May 2020.

CEN members are bound to comply with the CEN/CENELEC Internal Regulations which stipulate the conditions for giving this

European Standard the status of a national standard without any alteration. Up-to-date lists and bibliographical references

concerning such national standards may be obtained on application to the CEN-CENELEC Management Centre or to any CEN

member.

This European Standard exists in three official versions (English, French, German). A version in any other language made by

translation under the responsibility of a CEN member into its own language and notified to the CEN-CENELEC Management

Centre has the same status as the official versions.

CEN members are the national standards bodies of Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia,

Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway,

Poland, Portugal, Republic of North Macedonia, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey and

United Kingdom.
EUROPEAN COMMITTEE FOR STANDARDIZATION
COMITÉ EUROPÉEN DE NORMALISATION
EUROPÄISCHES KOMITEE FÜR NORMUNG
CEN-CENELEC Management Centre: Rue de la Science 23, B-1040 Brussels

© 2020 CEN All rights of exploitation in any form and by any means reserved Ref. No. EN 17398:2020 E

worldwide for CEN national Members.
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SIST EN 17398:2020
EN 17398:2020 (E)
Contents Page

European foreword ............................................................................................................................................... 3

Introduction ............................................................................................................................................................. 4

1 Scope ............................................................................................................................................................ 6

2 Normative references ............................................................................................................................ 6

3 Terms and definitions ............................................................................................................................ 6

4 The patient’s narrative and experience of illness........................................................................ 9

4.1 General ........................................................................................................................................................ 9

4.2 Requirements ......................................................................................................................................... 10

4.2.1 Organisational level ............................................................................................................................. 10

4.2.2 Point-of-care level ................................................................................................................................ 10

5 Partnership ............................................................................................................................................. 11

5.1 General ..................................................................................................................................................... 11

5.2 Requirements ......................................................................................................................................... 11

5.2.1 Organisational level ............................................................................................................................. 11

5.2.2 Point-of-care level ................................................................................................................................ 11

6 Documentation, care plan and information sharing ................................................................ 12

6.1 General ..................................................................................................................................................... 12

6.2 Requirements ......................................................................................................................................... 12

6.2.1 Organisational level ............................................................................................................................. 12

6.2.2 Point-of-care level ................................................................................................................................ 13

7 Patient and public involvement in management, organisation and decision/policy-

making ...................................................................................................................................................... 13

7.1 General ..................................................................................................................................................... 13

7.2 Requirements ......................................................................................................................................... 14

Annex A (informative) Cases .......................................................................................................................... 15

A.1 General ..................................................................................................................................................... 15

A.2 Follow-up in primary care ................................................................................................................. 15

A.3 Dentistry .................................................................................................................................................. 16

A.4 Breastfeeding ......................................................................................................................................... 17

A.5 Patient and public involvement ...................................................................................................... 18

A.6 Patient with psychosis ........................................................................................................................ 19

A.7 Long-term care ...................................................................................................................................... 20

A.8 Woman with aphasia after stroke .................................................................................................. 21

A.9 Paediatrics .............................................................................................................................................. 22

Annex B (informative) Patient involvement at different health care levels and phases ......... 24

B.1 General ..................................................................................................................................................... 24

B.2 Patient involvement and person-centred care .......................................................................... 24

B.3 Partnership in person-centred care and responsibilities ..................................................... 25

B.4 Resources and tools ............................................................................................................................. 26

Bibliography ......................................................................................................................................................... 28

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EN 17398:2020 (E)
European foreword

This document (EN 17398:2020) has been prepared by the Technical Committee CEN/TC 450

“Patient involvement in person-centred care”, the secretariat of which is held by SIS.

This European Standard shall be given the status of a national standard, either by publication of an

identical text or by endorsement, at the latest by December 2020, and conflicting national standards

shall be withdrawn at the latest by December 2020.

Attention is drawn to the possibility that some of the elements of this document may be the subject

of patent rights. CEN shall not be held responsible for identifying any or all such patent rights.

According to the CEN-CENELEC Internal Regulations, the national standards organisations of the

following countries are bound to implement this European Standard: Austria, Belgium, Bulgaria,

Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary,

Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal,

Republic of North Macedonia, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland,

Turkey and the United Kingdom.
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EN 17398:2020 (E)
Introduction

This document aims to facilitate patient involvement and the development of a partnership between

the patient and the care personnel. Patient involvement and partnership are based on the patient’s

resources and capacities as well as wishes and needs, primarily focusing on the patient ́s narrative,

shared decision-making, information sharing as well as documentation on the individual, operational

and strategic level (see Annex B).
Guiding principle

This document provides minimum requirements for patient involvement in health care. It aims to

facilitate the partnership between patients and care personnel in the design, implementation and

evaluation of health care services. The document can be used as an aid in the planning, management,

implementation and systematic evaluation of daily activities, enabling the patients to manage their

daily life and empowering them in the care process. Furthermore, it can be used to support patient

involvement on a systemic level; ensuring that the patient perspective is included in the

development, implementation and evaluation of health care services, research and policies.

This document focuses on patient involvement in health care. However, in many situations social

care is closely related to, or is provided along with, health care services. Thus, this document could

be used as a guide for social care alongside health care services.

This document applies to all health care services, e.g. in general practices, primary care centres,

dental practices, home care, rehabilitation, preventive and long-term care. Further, when the needs

of the patients are being considered, the family and the support networks around the patient such as

patient proxies should be included where appropriate (see Annex B).

This document can be used before, during and after a procurement process. It provides all parties

with a common understanding of the minimum level of patient involvement and enables the

establishment of related processes and structures for all aspects of the contact between the patient,

the care personnel and the health care service providers. This also includes transitions between

different levels of care.

The document can be used for education, training and continuous development (see Annex B). The

document can also serve as support when it comes to quality aspects related to patient involvement,

e.g. in EN 15224.
Patient involvement

Effective inter-professional communication, which involves the patient in the sharing of knowledge

and creating a common understanding of objectives and self-care strategies, is a key aspect of care

optimization. The health care providers should create favourable conditions for establishing a

partnership with the patient.

A partnership involving patients should be based on confidentiality, privacy and necessary consents,

when applicable, and encompass:
— at least two parties, including the patient;

— the sharing of information and knowledge, taking into account the patient’s perspective;

— a common strive towards a consensus for the setting of objectives and outcomes;

— a context where the patient has access to documentation and can provide input on the care plan

and any follow-up thereof.
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EN 17398:2020 (E)
Person-centred care

Person-centred care (PCC) is an approach in which patients take part in their care, self-care and in

the decision-making process. A person has capacities, feelings, wishes and needs – and should

therefore become a partner (in some cases also involving patient proxies) in their care and treatment.

This reflects an understanding that patients are, by virtue of their health knowledge and experience,

experts on their own health status. Patients are persons and should not be reduced to their health

status alone, but rather be integrated within a given environment, with their rights and future plans

being recognized. Hence, for most of time, the patient is not in a health care context. Therefore, there

is strong reason to acknowledge and endorse every patient’s resources, interests, needs and

responsibilities in situations which concern them. Especially in cases of life-long illness, persons

manage their life for the vast majority of time without care providers. This makes it important to

focus on the person’s self-care capacities. PCC is facilitated when care personnel work together with

users of health care services, tailoring the services to the resources, needs and goals of the individual.

PCC is a shared understanding and agreement about:

1. what really matters to the patient, in order to set care objectives that incorporate what health

and quality of life means for the individual person,

2. the professional assessment and guideline-driven care that incorporates evidence-based care

and national/local routines (see Annex A for examples).

Patients and care personnel identify and discuss problems and strategies related to the patient’s

condition(s), giving due consideration to the patient's experiences and preferences, clinical analyses,

tests and treatments and to the practical, social, and emotional effects of the condition(s) and care on

their daily life.

In a Cochrane review of central PCC components (including almost 11,000 patients), significant

improvements were observed in medical outcomes, self-efficacy and self-care when PCC was applied.

Controlled clinical trials have shown positive outcomes in terms of shorter hospitalization periods,

cost reduction, improved everyday life activities and discharge process, increased self-efficacy,

disease knowledge, improved health status and improved life quality in end of life care.

While the above mentioned approaches are often seen as a basis for modern health care, testimonies

point to the lack of structure, knowledge and policies to operationalise patient involvement.

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EN 17398:2020 (E)
1 Scope

This document specifies minimum requirements for patient involvement in health care services with

the aim to create favourable structural conditions for person-centred care.

It is applicable for use before, during and after the actual care that is provided by the care personnel.

This document is also applicable for use on a strategic level for quality assurance and quality

improvement, for procurement, educational and supervisory purposes and as a guiding document

for research and development projects in the field of intervention and implementation of person-

centred care.
2 Normative references
There are no normative references in this document.
3 Terms and definitions
For the purposes of this document, the following terms and definitions apply.

ISO and IEC maintain terminological databases for use in standardization at the following addresses:

• IEC Electropedia: available at http://www.electropedia.org/
• ISO Online browsing platform: available at https://www.iso.org/obp
3.1
care

activities within health care services, social care services or an integration of both, including care

provided by informal carers

Note 1 to entry: An informal carer includes any person such as a family member, friend or a neighbour, who

provides regular ongoing assistance to another person.
3.2
care period

time during which a person receives care (3.1), running from the first request or contact between the

care seeker and care provider to the end of the episode of care
3.3
care personnel

persons working in the provision of health care (3.8) or social care (3.24) services, whether as

individual practitioners or employees of health institutions and programmes
3.4
care plan

plan of needs, expectations, goals, resources and treatment, developed by the care provider in

partnership (3.13) with the patient (3.14)

Note 1 to entry: In some European countries, an individual care plan is required by national legislation for

patients with long term health needs.
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3.5
contact

any interaction or communication between the patient (3.14) and the care personnel (3.3)

Note 1 to entry: Interaction includes physical and non-physical communication as facilitated by assistive

technology.
3.6
continuum of care

provision and consistency of care (3.1) over a period of time spanning all levels and intensities of

care, and including self-care
3.7
documentation

record of the health status (3.10), health care (3.8) and social care (3.24) of a patient, based on the

patient's narrative (3.12)
3.8
health care

care activities, services, management or supplies related to the health of an individual

Note 1 to entry: activities undertaken by care personnel are intended to maintain and improve health,

prevent harm and illness, slow down the deterioration of health and alleviate pain and suffering

[SOURCE: EN ISO 13940:2016, 3.1.1, modified - Note 1 to entry has been replaced]
3.9
health care services

services covering the whole spectrum of care (3.1), from promotion and prevention to diagnostic,

rehabilitation and palliative care, as well as all levels of care including self-care, home care,

community care, primary care, long-term care and hospital care for the purpose of providing

integrated health services throughout life
3.10
health status

level of health of a person as assessed in relation to physical and mental functions, body structure,

personal factors, activities, participation and environmental aspects
3.11
inter-professional team

team composed of members from the same or different professions and occupations with varied and

specialised knowledge, skills and methods, who are committed to a common purpose, approach and

performance goals for which they are held mutually accountable

Note 1 to entry: Terms such as interdisciplinary, inter-professional, multi-professional and multidisciplinary

are often used interchangeably.
3.12
narrative

patients' own account of what matters to them in the present situation, past experiences and future

expectations
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3.13
partnership

relationship of collaboration and mutual respect between a patient (3.14) and care personnel (3.3)

3.14
patient

person seeking or needing care or receiving health care (3.8) or social care (3.24) services

Note 1 to entry: In situations where a patient, for whatever reason, are incapable of defending their interest,

a patient proxy assists or represents the patient.

Note 2 to entry: In some care facilities, patients are not referred to as “patients” but rather as residents,

clients, etc.
Note 3 to entry: A patient may or may not have a diagnosis.
3.15
patient involvement

patients' participation in their care on the organisational and/or individual level

3.16
patient proxy

representative who assists or acts on behalf of the patient (3.14) in the narrative (3.12), decision-

making and patient care process (3.17)

Note 1 to entry: The term patient proxy can be subject to different meanings and legal contexts in national

legislation.
3.17
process

set of interrelated or interacting activities that use inputs to deliver an intended result

[SOURCE: ISO 9000:2015, 3.4.1]
3.18
public involvement

participation, or attempt thereto, of public or lay people and/or organisations in decision and policy

making
3.19
quality in health care

degree to which health care fulfils requirements related to defined quality aspects

[SOURCE: EN 15224:2016, 3.11]
3.20
quality of life

persons' perception of life in terms of physical and mental state, personal beliefs, social relations and

relationship to their personal environment
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EN 17398:2020 (E)
3.21
self-care

persons' behaviour and actions regarding their own health and care (3.1), and ability to engage in

health promoting activities, if needed facilitated by partnership (3.13) between the patient and care

personnel or other parties
3.22
service

output of an organisation with at least one activity necessarily performed between the organisation

and the customer

Note 1 to entry: In health care and social care, the service can be provided by an individual.

[SOURCE: ISO 9000:2015, 3.7.7, modified - Note 1 to entry has been added]
3.23
shared decision-making

decision-making made in in partnership (3.13) between patient (3.14) and care personnel (3.3)

3.24
social care

care (3.1) provided with a focus to assist and support a patient in coping with activities of everyday

life

Note 1 to entry: There are variations in social care content in different European countries and the care can be

regulated in national legislation.
4 The patient’s narrative and experience of illness
4.1 General

The patient’s narrative is essential when it comes to identifying patients' views of their objectives,

needs, preferences, values and resources, as well as perception of their own role in their care. The

narrative includes information regarding the patient’s everyday life, condition, symptoms, disease

knowledge and perception, and motivation/objectives. The question “what matters to you” can be a

starting point that helps the patients present themselves as persons through a narrative (see

Clause A.1). The narrative should in turn build on partnership between the care personnel and

patient which encourages and empowers the patient to take part in the care process.

The patient's narrative enables care personnel to listen and try to understand the request (for health

care services) of each specific individual. It can be a request for preventive care or relate to the

patient’s experience of illness. Diseases and conditions can be described according to different

criteria, but to understand what illness means in everyday life, the care personnel should listen

carefully to each patient’s narrative. It is the care personnel’s responsibility to understand the

patient’s objectives, knowledge, self-management skills and confidence, to strengthen these aspects

where necessary and to ensure that relevant interventions and support services are available (see

Clause A.3). The essence is to understand what an illness means in the everyday life of the person.

This should be the point of departure for all subsequent interventions in the care of that person. This

can be obtained through a narrative, but also through other means of communication when the

patient is not able to provide a narrative. Necessary insights (see Clause A.7 for example) are

obtained through a process of interpretation of words or observations carried out by the care

personnel.
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EN 17398:2020 (E)

In order to facilitate patient involvement in health care services, the following focus areas regarding

the patient’s narrative and experience of illness, should be taken into account in order to guide the

care process:
— inter-professional and person-centred approach;
— respect for values, preferences and expressed needs;
— physical comfort;
— emotional support.

Effective communication between care personnel and patients is a prerequisite for patient

involvement. It needs to be recognized that e.g. sensory or cognitive impairments, educational

differences, differences in language, or culture can hamper communication between the patient and

care personnel (see Clause A.7).

In paediatric settings, the patients may be represented by their parent or legal guardian who can help

form their narrative of the illness or the experience of illness. However, it is also essential to involve

children and young people, as much as possible and in an appropriate way, in discussions about their

care, even if they are not able to make decisions of their own. Young patients' abilities to

communicate and contribute to narratives and make decisions, depends more on their ability to

understand and consider options, than on their age. It is important that a the patient’s maturity and

understanding is assessed on an individual basis. Even a very young child will be able to contribute

to some degree (see Clause A.9 for example).
4.2 Requirements
4.2.1 Organisational level
The organisation shall ensure that:

a) the patient’s narrative can be shared within patient confidentiality among parties in the inter-

professional team as soon as possible, including, if needed, all subsequent revisions of the

narrative which are required during the care period;

b) the environment facilitates the capturing and sharing of the patient's narrative, while

recognizing the need for privacy;

c) time for the care personnel is set aside for discussion and exploration of the patient's narrative;

d) the care personnel is trained to obtain the narrative.
4.2.2 Point-of-care level
The care personnel shall ensure that:

a) patients are prepared, and given the opportunity, to provide their narrative at each care contact;

b) the following aspects can be included in the patient narrative:

— the reason why the patient is seeking help or advice, and how the everyday life is affected;

— the patient's feeling of wellbeing;

— the patient's objectives, motivations and values regarding the care process and care

outcomes;
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c) in cases where it is not possible to obtain a narrative, an alternative approach is used to capture

the information needed.
5 Partnership
5.1 General

The use of an inter-professional and person-centred approach throughout the continuum of care,

including transitions between levels of care, where the patient is a partner of the team, is a key aspect

of care. All involved experts, including the patient, should be taking part in the care-related decisions.

In order to facilitate patient involvement in health care services, the following focus areas should be

taken into account in order to guide the partnership process:
— inter-professional and person-centred approach;
— coordination and integration of care;
— information;
— communication;
— continuous education.
5.2 Requirements
5.2.1 Organisational level
The organisation shall ensure that:

a) there are routines enabling the patient to be continuously involved in the decision-making

process, as well as the follow up and revision (if necessary) of the care process during the care

period;

b) there are routines in place to ensure that time is set aside for the care personnel to establish a

partnership;

c) in situations where a partnership is not possible due to the patient’s cognitive or physical status,

language barriers or other aspects of communication, decisions made by the care personnel shall

be duly documented and re-evaluated as soon as possible together with the patient.

5.2.2 Point-of-care level
The care personnel shall ensure that:

a) the patient’s understanding of shared decision-making is assessed, and that the patient's

preferences are documented;

b) the patient’s motivations, values, and objectives are discussed, and strategies for the patient’s

resources, objectives, wishes and needs are incorporated into the care plan;

c) the patient and the care personnel have a common and mutual understanding regarding the care,

impact on symptoms and possible side effects, including the
...

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