9.3.1. Participation in clinical practice guidelines
Summary table of the activity
Commitment, initiative and activity
Start
Fin
State
9. Observatory on Open Government
9.3. Encourage participation in the development or updating of clinical practice guidelines
9.3.1. To encourage the participation of civil society (federations/associations of affected patients) in working groups for the preparation or updating of clinical practice guidelines. Elaboration and updating of guides.
01/01/2021
31/10/2024
Finished
State of implementation
In October 2022, the Clinical Practice Guide (CPG) on Palliative Care in Pediatrics, which counted on the participation of patient associations in the processes of external review and public presentation of the draft CPG before its publication (https://portal.guiasalud.es/guia-en-capas/cuidados-paliativos-pediatria/).
In December 2022, the protocol was published Evaluation and clinical management of adolescent self-injury: evidence-based protocol. A representative of patients has participated in the drafting group, and the Federation of Associations of Relatives and People with Mental Illness of Galicia in the external review. In addition, the protocol was reviewed by adolescents from the Study and Treatment of Self-Harm Group (GRETA) (https://portal.guiasalud.es/opbe/autolesiones-adolescencia/).
In May of 2023 the Review document of the Clinical Practice Guide (GPC) on the Management of Depression in Adults, which reflects the process by which the working group concluded that the recommendations of the original GPC, published in 2014, are still valid today. Members of the Federation of Associations of Relatives and People with Mental Illness (FEAFES) participated in the review of the GPC through the expert consultation questionnaire.
In May of 2023, the Clinical Practice Guide on secondary prevention of stroke. Update. To incorporate the vision of patients, relatives and caregivers, participation in the group of developers of associations registered in the School of Patients. They participated in the definition and assessment of critical outcomes. Their opinions were also explored and taken into account in the process of drafting the recommendations, as well as in the process of reviewing the documents. Patient associations also participated during the process of external review and public exposure of the GPC draft before its publication.
One of the objectives of the Clinical Practice Guidelines Program (CPG) at the SNS is to involve patients (or patient representatives) in all phases of developing CPGs as members of the development group (GEG). In addition, all CPGs invite patient associations to participate in the processes of external review and public exposure.
In the 2023 work plan, four new GPCs have been included:
GPC on Palliative Care in Adults
GPC on Chronic Kidney Disease
GPC on Atrial Fibrillation
GPC on the Management of Food Behavioral Disorders
The updated listing is shown below:
Clinical Practice Guidelines (CPG)
Patient participation in the Guide Development Group (GEG)
Agency
GPC on Secondary Stroke Prevention
Yes
AETSA
GPC on the Prevention and Treatment of Childhood and Youth Obesity
Yes
Madrid
GPC for the Management of Patients with Anxiety Disorders in PA
Yes
SESCS
GPC on Prostate Cancer Treatment
Yes
IACS
GPC for the Management of Stroke Patients in PA
Yes
Osteba
GPC on Alzheimer's Disease and Other Dementias
No.
ISCIII
GPC on the Management of Antidiabetics in Patients with Type 2 Diabetes Mellitus
Yes
IACS
GPC on Diabetes Mellitus Type 1
Yes
SESCS
GPC on Psychosocial Interventions in Severe Mental Disorder
Yes
IACS
GPC on the Management of Patients with Autism Spectrum Disorder in PA
Yes
AETSA
GPC on the treatment of chronic non-oncological pain
Yes
IACS
GPC for the management of Arterial Hypertension in Primary Care
Yes
SESCS
GPC on Insomnia in Primary Care
Yes
AETSA
GPC on Eating Behavior Disorder
Yes
AETSA
GPC on Palliative Care in Adults
Yes
Avalia-t
GPC on Chronic Kidney Disease
Yes
IACS
GPC on Atrial Fibrillation
Yes
SESCS
Information directed to patients, family members and caregivers about Clinical Practice Guidelines (CPGs) and Other Evidence-Based Products (OPBEs) is published in the Journal of Clinical Practice. portal Health Guide, the Library of Clinical Practice Guides of the National Health System.
This portal aims to help patients, family members and caregivers understand the recommendations of the GPCs and OPBEs and provide information needed to facilitate decision making on their part. It can also serve to improve communication between doctor and patient.
One of the objectives of the programme is to involve patients (or patient representatives) in all stages of developing CPGs as members of the development group (GEG). In addition, all CPGs invite patient associations to participate in the processes of external review and public exposure.
Patient Participation in Other Evidence-Based Products (OPBE)
The OPBEs currently under development are shown in the table below. In the case of OPBEs, the participation of patient associations in the external review of the document is assessed in each particular case. At the moment, these are products that are in the process of being prepared and have not yet reached the external review stage. In the case of the OPBE “Recommendations for the use of vitamin D”, patients have not participated.
Participation in OPBE
Agency
Other Evidence-Based Products (OPBE)
Osteba
Improvement of the process of action during thromboprophylaxis in ischemic stroke
Avalia-T
Recommendations use vitamin D
HERE
Clinical questions about hip fracture
AETSA
Diagnosis and Monitoring of Kawasaki Disease
ISCIII
Bibliographic review on diagnosis and care for Reactive Attachment Disorder
Avalia-T
Protocol on the Management of Adolescent Self-Harm
Participation of patients in the Clinical Practice Guidelines (CPG) of the program that is being prepared or updated
In September 2021, the GPC on palliative care for adults in the last days was published, which has had the participation of a family member in the drafting group (https://portal.guiasalud.es/gpc/atencion-paliativa-ultimos-dias/). In addition, three new GPCs were included.
GPC on the treatment of chronic non-oncological pain,
GPC for the management of Arterial Hypertension in Primary Care,