Abstract
In Spain, there is not a national strategy to promote shared decision making (SDM) in clinical practice, and it is still not a requisite for improving the quality of health services, in either the legal norms or professionals’ educational curricula. However, several national strategies in specific health areas increasingly include the principles of person centred care (PCC) and SDM into their objectives, promoting patients’ empowerment and activation. Furthermore, several institutions continue to develop Patient Decision Aids (PtDAs) and other resources to facilitate patients’ involvement in their own care; training programs for professionals; links between PtDAs and clinical practice guidelines; as well as interventional studies assessing the impact of PCC and SDM interventions in clinical practice. Initiatives to involve patients in health research design and health technology assessment are also being developed. We describe an update of the current state of research, policy and implementation of SDM after five years of substantial advances in Spain. Many challenges remain regarding national and regional policies on PCC and SDM, implementation of SDM in real practice and educational curricula, development of quality indicators and evaluation procedures.
Zusammenfassung
In Spanien gibt es keine nationale Strategie zur Förderung der gemeinsamen Entscheidungsfindung (SDM) in der klinischen Praxis, und es ist immer noch keine Voraussetzung für die Verbesserung der Qualität der Gesundheitsdienste, weder in den gesetzlichen Normen noch in den Lehrplänen der Fachkräfte. Mehrere nationale Strategien in bestimmten Gesundheitsbereichen beziehen jedoch zunehmend die Prinzipien der personenzentrierten Versorgung (PCC) und SDM in ihre Ziele ein, um die Selbstbestimmung und Aktivierung der Patienten zu fördern. Darüber hinaus entwickeln mehrere Institutionen weiterhin Patientenentscheidungshilfen (Patient Decision Aids, PtDAs) und andere Ressourcen, um die Einbeziehung der Patienten in ihre eigene Versorgung zu erleichtern; Ausbildungsprogramme für Fachleute; Verbindungen zwischen PtDAs und Leitlinien für die klinische Praxis; sowie interventionelle Studien zur Bewertung der Auswirkungen von PCC- und SDM-Interventionen in der klinischen Praxis. Initiativen zur Einbeziehung von Patienten in die Gestaltung der Gesundheitsforschung und die Bewertung von Gesundheitstechnologien werden ebenfalls entwickelt. Wir beschreiben einen aktuellen Stands der Forschung, Politik und Umsetzung von SDM nach fünf Jahren erheblicher Fortschritte in Spanien. Viele Herausforderungen bleiben bestehen: in Bezug auf die nationale und regionale Politik zu PCC und SDM, die Umsetzung von SDM in der Praxis und die Lehrpläne, die Entwicklung von Qualitätsindikatoren und Bewertungsverfahren.
Keywords
Schlüsselwörter
The Spanish National Healthcare System: potential advantages and disadvantages for person centred care and shared decision making implementation
The Spanish National Health System (Spanish NHS) is publicly funded, universal model of care, and decentralised in its management and financing, with a macro level of policy coordination by the Spanish Ministry of Health. The right to health protection is guaranteed in article 43 of the Spanish Constitution for all Spanish citizens. The General Health Law of 1986 established the principles and criteria for constitutional application. The provision and financing of health care depend on the Regional Health Authorities, and the Directorate General of the common portfolio of services of the NHS and Pharmacy (DGPSPh) of the Spanish Ministry of Health is the national organisation responsible for coverage approval of health technologies [
[1]
].Ministry of Health Social Services and Equality, National Health System of Spain, 2012 [Internet monograph], Madrid, 2012. https://www.sanidad.gob.es/organizacion/sns/docs/sns2012/SNS012__Ingles.pdf.
Mechanisms for introducing health technologies (such as patient decision aids) in Spain are informed by the Spanish Network of Agencies for Assessing National Health System Technologies and Performance (RedETS; redets.sanidad.gob.es) and the Spanish Network for the Evaluation of Medicines in the National Health System (REvalMed NHS; aemps.gob.es). RedETS is the organisation responsible for appraising the safety, effectiveness, cost-effectiveness, organisational aspects, and legal, ethical, and environmental issues of all non-pharmaceutical technologies [
[2]
]. REvalMed is a state agency linked to the Ministry of Health, responsible for assessing the quality, safety, and efficacy of medicines before market access of pharmacological technologies.- Serrano-Aguilar P.
- Asua-Batarrita J.
- Molina-López M.T.
- Espallargues M.
- Pons-Rafols J.
- García-Armesto S.
- Arriola-Bolado P.
- López-García M.
- Faraldo-Vallés M.J.
- Sánchez-Gómez L.M.
- Juárez-Rojo C.
- Prieto-Yerro I.
- Casado-Durández P.
- Sarria-Santamera A.
The Spanish Network of Agencies for Health Technology Assessment and Services of the National Health System (RedETS).
The public nature of the Spanish NHS ensures the availability of quality, equitable and accessible healthcare services, and could be an advantage in order to effectively implement person centred care (PCC) and shared decision making (SDM) policies and procedures at all levels of the Spanish NHS. Furthermore, the strength of the Spanish primary care system based on the existence of a structured system as well as a comprehensive package of benefits for an effective continuity of care across levels [
[3]
], may facilitate the successful adoption of SDM and patients’ involvement. However, the decentralised responsibilities for healthcare to lower levels of government and administrations in Spain could result in a heterogeneous introduction of SDM across regions, duplicated efforts and less efficiency in the development of SDM resources and technologies, implementation protocols and evaluation procedures.National strategies and policies for person centred care and shared decision making
The Law for Patient Autonomy and Health Documentation and Information-Related Rights and Obligations (41/2002) [
[4]
], that incorporated the principles of the Oviedo Convention on Human Rights and Biomedicine [Boletín Oficial del Estado, Ley 41/2002 de 14 de noviembre, Básica Reguladora de la Autonomía del Paciente y de Derechos y Obligaciones en Materia de Información y Documentación clínica., 2002. https://www.boe.es/eli/es/l/2002/11/14/41/con.
[5]
], regulates matters such as the right to health information, informed consent, patient's right to autonomy, health documentation, clinical records, and other clinical information. However, two decades later there is still a lack of a national strategy for the promotion and implementation of PCC and SDM in the Spanish NHS.Nonetheless, national strategies for specific health areas have indeed included explicit mentions to SDM. For instance, the primary and community care strategy [
[6]
] have among its objectives improving the decision-making capacity of individuals, families and communities, to promote active users and to achieve a lasting alliance with the population based on SDM. Other examples are strategic plans for different health conditions or users of the health system [Boletín Oficial del Estado, Marco Estratégico para la Atención Primaria y Comunitaria, 2019. https://www.boe.es/boe/dias/2019/05/07/pdfs/BOE-A-2019-6761.pdf.
7
, 8
, Boletín Oficial del Estado, La Ley Orgánica 3/2021, de 24 de marzo, de regulación de la eutanasia reconoce el derecho a la autonomía del paciente, 2021. https://www.boe.es/eli/es/lo/2021/03/24/3.
9
], as well as the strategy for digital health, information and innovation [Ministerio de Igualdad, Anteproyecto de ley para la igualdad real y efectiva de las personas trans y para la garantía de los derechos de las personas LGTBI [Servicios/Participación pública/Audiencia e información], 2021. https://www.igualdad.gob.es/servicios/participacion/audienciapublica/Paginas/2021/apl-igualdad-efectiva-persona-trans-derechos-lgtbi.aspx (accessed March 7, 2022).
[10]
].Although national systems and standards for monitoring the implementation of the principles of PCC and SDM are still lacking in the Spanish context [
[11]
], relevant steps have been taken to assess PCC of primary care services. Value-based payment systems are also used to incentivise healthcare professionals to implement PCC in the healthcare system [[12]
].EIT Health, Patient Innovation Bootcamp, Who Better than Patients Their Caregivers to Have That Crucial Insight Which Leads to True Prod. Innov., 2021. https://eithealth.eu/programmes/patient-innovation-bootcamp/?utm_source=Google&utm_medium=CPC&utm_campaign=Patient&utm_id=Patient&utm_term=CPC&utm_content=1&gclid=Cj0KCQiA95aRBhCsARIsAC2xvfxPJ1F_qiMh_nU-2z3hwaGswT7FZ0dTbZz3wyn6wXqO7Gb9LSBOe28aAmm3EALw_wcB (accessed March 7, 2022).
Patient and public involvement in research and development of person centred care and shared decision making
Incorporating the perspective of users, such as patients and their families or healthcare professionals, from the earliest phases of research design and development, may ensure aspects such as the relevance, appropriateness and acceptability of SDM interventions, including PtDAs and other support tools, are achieved and implemented [
13
, L. Perestelo-Pérez, A. Rivero-Santana, A. Abt-Sacks, A. Toledo-Chavarri, N. Brito, Y. Álvarez-Pérez, N. González-Hernández, P. Serrano-Aguilar, Patient Empowerment and Involvement in Research, in: 2017: pp. 249–264. https://doi.org/10.1007/978-3-319-67144-4_15.
14
, 15
, 16
, 17
]. In Spain, within the notion of patient involvement and the framework of user-centred design [[18]
], progress is increasingly being made in the incorporation of participatory and integrative methodologies from the perspective of users and other relevant actors [13
, L. Perestelo-Pérez, A. Rivero-Santana, A. Abt-Sacks, A. Toledo-Chavarri, N. Brito, Y. Álvarez-Pérez, N. González-Hernández, P. Serrano-Aguilar, Patient Empowerment and Involvement in Research, in: 2017: pp. 249–264. https://doi.org/10.1007/978-3-319-67144-4_15.
19
]. The use of methodological resources such as co-creation in the initial design phases or the identification of information and research needs by the relevant actors legitimises the process from the beginning [20
, - Vaisson G.
- Provencher T.
- Dugas M.
- Trottier M.-È.
- Chipenda Dansokho S.
- Colquhoun H.
- Fagerlin A.
- Giguere A.M.C.
- Hakim H.
- Haslett L.
- Hoffman A.S.
- Ivers N.M.
- Julien A.-S.
- Légaré F.
- Renaud J.-S.
- Stacey D.
- Volk R.J.
- Witteman H.O.
User Involvement in the Design and Development of Patient Decision Aids and Other Personal Health Tools: A Systematic Review.
21
].Likewise, the Spanish RedETS has developed a Patient Involvement Strategy aimed to promote patients’ participation from the first phases of the elaboration of Health Technologies Assessment reports [
[22]
]. This strategy was built by integrating results from a literature review, semi-structured interviews with health technology assessment managers and researchers with experience in patients’ involvement, a consultation to patient organisations, and a Delphi process among the members of the RedETS Governing Council [- Toledo-Chávarri A.
- Gagnon M.-P.
- Álvarez-Pérez Y.
- Perestelo-Pérez L.
- Triñanes Pego Y.
- Serrano Aguilar P.
Development of a decisional flowchart for meaningful patient involvement in Health Technology Assessment.
Int. J. Technol. Assess. Health Care. 2021; 37e3https://doi.org/10.1017/S0266462320001956
[14]
]. The strategy used involvement as an inclusive concept with three levels of participation: communication, consultation, and engagement. The objective of the strategy is to increase impact and understand the appropriate role of patient-based evidence [22
, - Toledo-Chávarri A.
- Gagnon M.-P.
- Álvarez-Pérez Y.
- Perestelo-Pérez L.
- Triñanes Pego Y.
- Serrano Aguilar P.
Development of a decisional flowchart for meaningful patient involvement in Health Technology Assessment.
Int. J. Technol. Assess. Health Care. 2021; 37e3https://doi.org/10.1017/S0266462320001956
23
].- Toledo-Chávarri A.
- Triñanes Pego Y.
- Rodrigo E.R.
- Roteta N.I.
- Novella-Arribas B.
- Vicente Edo M.J.
- Gavín Benavent P.
- Puigdomenech E.
- Molina Linde J.M.
Evaluation of patient involvement strategies in health technology assessment in Spain: the viewpoint of HTA researchers.
Int. J. Technol. Assess. Health Care. 2021; 37e25https://doi.org/10.1017/S0266462320000586
Other examples of the use of more participatory and inclusive design methodologies, include studies aiming to identify patients’ information needs, as well as research priorities from the perspective of patients, relatives or healthcare professionals [
24
, - Torres-Castaño A.
- Perestelo-Pérez L.
- Duarte-Díaz A.
- Toledo-Chávarri A.
- Ramos-García V.
- Álvarez-Pérez Y.
- Serrano-Aguilar P.
Information needs and research priorities for fertility preservation in women with breast cancer: patients and experts’ perspectives.
Eur. J. Cancer Care (Engl). 2021; 30https://doi.org/10.1111/ecc.13359
25
, 26
]. Additionally, different initiatives have recently used co-creation strategies to promote patient empowerment among healthcare users with different health conditions [- Mas M.À.
- Miralles R.
- Heras C.
- Ulldemolins M.J.
- Bonet J.M.
- Prat N.
- Isnard M.
- Pablo S.
- Rodoreda S.
- Verdaguer J.
- Lladó M.
- Moreno-Gabriel E.
- Urrutia A.
- Rocabayera M.A.
- Moreno-Millan N.
- Modol J.M.
- Andrés I.
- Estrada O.
- Del Rey J.A.
- P.-B. Group*
Designing a Person-Centred Integrated Care Programme for People with Complex Chronic Conditions: A Case Study from Catalonia.
27
, - Álvarez-Pérez Y.
- Perestelo-Pérez L.
- Rivero-Santanta A.
- Torres-Castaño A.
- Toledo-Chávarri A.
- Duarte-Díaz A.
- Mahtani-Chugani V.
- Marrero-Díaz M.D.
- Montanari A.
- Tangerini S.
- González-González C.
- Perello M.
- Serrano-Aguilar P.
Co-Creation of Massive Open Online Courses to Improve Digital Health Literacy in Pregnant and Lactating Women.
28
, - Alvarez-Perez Y.
- Perestelo-Perez L.
- Rivero-Santana A.
- Wagner A.M.
- Torres-Castaño A.
- Toledo-Chávarri A.
- Duarte-Díaz A.
- Alvarado-Martel D.
- Piccini B.
- Van den Broucke S.
- Vandenbosch J.
- González-González C.
- Perello M.
- Serrano-Aguilar P.
Cocreation of Massive Open Online Courses to Improve Digital Health Literacy in Diabetes: Pilot Mixed Methods Study.
JMIR Diabetes. 2021; 6e30603https://doi.org/10.2196/30603
29
, - Toledo-Chávarri A.
- Ramos-García V.
- Koatz D.
- Torres-Castaño A.
- Perestelo-Pérez L.
- Ramírez-Puerta A.B.
- Tello-Bernabé M.-E.
- García-García J.-M.
- García-García J.
- Pacheco-Huergo V.
- Orrego C.
- González-González A.I.
- E. Group
Co-Design Process of a Virtual Community of Practice for the Empowerment of People with Ischemic Heart Disease.
30
].SDM research
Currently, there are still no public or private funding programs specifically aimed at SDM/PCC research. To obtain funding, research projects in this area must compete in general funding calls with other projects of a clinical and epidemiological nature.
The development and assessment of PtDAs continues to be the most active line of research. New studies and research protocols have been published evaluating PtDAs for patients with rheumatoid arthritis [
[31]
], hip osteoarthritis [[32]
], hormonal contraception [- Perestelo-Pérez L.
- Álvarez-Pérez Y.
- Rivero-Santana A.
- Ramos-García V.
- Duarte-Díaz A.
- Torres-Castaño A.
- Toledo-Chávarri A.
- Herrera-Perez M.
- País-Brito J.L.
- del Castillo J.C.
- Vázquez J.R.
- Orrego C.
- Serrano-Aguilar P.
The effectiveness of a web-based decision aid for patients with hip osteoarthritis: study protocol for a randomized controlled trial.
[33]
], generalised anxiety [- de Molina-Férnandez M.I.
- Raigal-Aran L.
- de la Flor-Lopez M.
- Prata P.
- Font-Jimenez I.
- Valls-Fonayet F.
- March-Jardi G.
- Escuriet-Peiro R.
- Rubio-Rico L.
The effectiveness of a digital shared decision-making tool in hormonal contraception during clinical assessment: study protocol of a randomized controlled trial in Spain.
[34]
] or the elderly with chronic diseases and polypharmacy [- Perestelo-Pérez L.
- Rivero-Santana A.
- Ramos-García V.
- Álvarez-Pérez Y.
- Duarte-Díaz A.
- Torres-Castaño A.
- Trujillo-Martín M. del M.
- Del Pino-Sedeño T.
- González-González A.I.
- Serrano-Aguilar P.
Effectiveness of a web-based decision aid for patients with generalised anxiety disorder: a protocol for a randomised controlled trial.
BMJ Open. 2020; 10e039956https://doi.org/10.1136/bmjopen-2020-039956
[35]
]. Other studies have developed communication tools [[36]
] and support materials aimed at facilitating the application of SDM by health professionals [- Oreja-Guevara C.
- Potra S.
- Bauer B.
- Centonze D.
- Giambastiani M.P.
- Giovannoni G.
- Kesselring J.
- Langdon D.
- Morrow S.A.
- Nouvet-Gire J.
- Pontaga M.
- Rieckmann P.
- Schippling S.
- Alexandri N.
- Shanahan J.
- Thompson H.
- Van Galen P.
- Vermersch P.
- Yeandle D.
Joint Healthcare Professional and Patient Development of Communication Tools to Improve the Standard of MS Care.
[37]
], but they did not assess their effectiveness. Two recent study protocols will assess the effectiveness of risk communication in breast cancer screening (DECIDO study) [- Hernández-Leal M.J.
- Codern-Bové N.
- Pérez-Lacasta M.J.
- Cardona A.
- Vidal-Lancis C.
- Carles-Lavila M.
Development of support material for health professionals who are implementing Shared Decision-making in breast cancer screening: validation using the Delphi technique.
BMJ Open. 2022; 12e052566https://doi.org/10.1136/bmjopen-2021-052566
[38]
] and the integration of decision analysis in a decision tool for thromboprophylaxis during pregnancy (DASH-TOP) [- Pons-Rodriguez A.
- Forné Izquierdo C.
- Vilaplana-Mayoral J.
- Cruz-Esteve I.
- Sánchez-López I.
- Reñé-Reñé M.
- Cazorla C.
- Hernández-Andreu M.
- Galindo-Ortego G.
- Llorens Gabandé M.
- Laza-Vásquez C.
- Balaguer-Llaquet P.
- Martínez-Alonso M.
- Rué M.
Feasibility and acceptability of personalised breast cancer screening (DECIDO study): protocol of a single-arm proof-of-concept trial.
BMJ Open. 2020; 10e044597https://doi.org/10.1136/bmjopen-2020-044597
[39]
].- Humphries B.
- León-García M.
- Bates S.
- Guyatt G.
- Eckman M.
- D’Souza R.
- Shehata N.
- Jack S.
- Alonso-Coello P.
- Xie F.
Decision Analysis in Shared decision making for Thromboprophylaxis during Pregnancy (DASH-TOP): a sequential explanatory mixed methods pilot study protocol.
BMJ Open. 2021; 11e046021https://doi.org/10.1136/BMJOPEN-2020-046021
The SDM-Q-9 questionnaire has recently been used to assess the perception of SDM during oncology consultations, both by patients [
40
, 41
] and physicians [42
, - Calderon C.
- Ferrando P.J.
- Carmona-Bayonas A.
- Lorenzo-Seva U.
- Jara C.
- Beato C.
- García T.
- Ramchandani A.
- Castelo B.
- Muñoz M.M.
- Garcia S.
- Higuera O.
- Mangas-Izquierdo M.
- Jimenez-Fonseca P.
Validation of SDM-Q-Doc Questionnaire to measure shared decision-making physician’s perspective in oncology practice.
43
], showing discordant results among patients and healthcare professionals being higher in the latter. In another study, the psychometric properties of this questionnaire have been analysed in patients with multiple sclerosis [[44]
]. The three-item scale CollaboRATE has also been validated in psychiatric outpatients [[45]
]. Another study assessed control preferences and perceptions (Control Preference Scale) and information needs in patients with Generalised Anxiety Disorder [[25]
].Other initiatives assess more complex, multicomponent interventions including PCC and SDM interventions for patients or professionals [
27
, - Álvarez-Pérez Y.
- Perestelo-Pérez L.
- Rivero-Santanta A.
- Torres-Castaño A.
- Toledo-Chávarri A.
- Duarte-Díaz A.
- Mahtani-Chugani V.
- Marrero-Díaz M.D.
- Montanari A.
- Tangerini S.
- González-González C.
- Perello M.
- Serrano-Aguilar P.
Co-Creation of Massive Open Online Courses to Improve Digital Health Literacy in Pregnant and Lactating Women.
46
]. The European project COMPAR-EU, funded by the European Commission, aims to identify and compare self-management interventions in order to develop decisions tools for promoting the empowerment of adults living with type 2 diabetes, obesity, chronic obstructive pulmonary disease and heart failure [- Ramallo-Fariña Y.
- Rivero-Santana A.
- García-Pérez L.
- García-Bello M.A.
- Wägner A.M.
- Gonzalez-Pacheco H.
- Rodríguez-Rodríguez L.
- Kaiser-Girardot S.
- Monzón-Monzón G.
- Guerra-Marrero C.
- Daranas-Aguilar C.
- Roldán-Ruano M.
- Carmona M.
- Serrano-Aguilar P.G.
Patient-reported outcome measures for knowledge transfer and behaviour modification interventions in type 2 diabetes-the INDICA study: a multiarm cluster randomised controlled trial.
[47]
]. Other projects evaluate the effectiveness of a virtual community practice to improve the empowerment of patients with ischaemic heart disease (eMPODERA-2 study [- Ballester M.
- Orrego C.
- Heijmans M.
- Alonso-Coello P.
- Versteegh M.M.
- Mavridis D.
- Groene O.
- Immonen K.
- Wagner C.
- Canelo-Aybar C.
- Sunol R.
Comparing the effectiveness and cost-effectiveness of self-management interventions in four high-priority chronic conditions in Europe (COMPAR-EU): a research protocol.
BMJ Open. 2020; 10e034680https://doi.org/10.1136/bmjopen-2019-034680
[48]
]), a person-centred intervention in young-old patients with multimorbidity and polypharmacy, aimed at improving medication appropriateness (MULTIPAP study [- González-González A.I.
- Perestelo-Pérez L.
- Koatz D.
- Ballester M.
- Pacheco-Huergo V.
- Ramos-García V.
- Torres-Castaño A.
- Rivero-Santana A.
- Toledo-Chávarri A.
- Valcárcel-Nazco C.
- Mateos-Rodilla J.
- Obaya-Rebollar J.C.
- García-García J.
- Díaz-Sánchez S.
- Morales-Cobos L.
- Bosch-Fontcuberta J.M.
- Vallejo-Camazón N.
- Rodríguez-Almodovar A.
- Del Castillo J.C.
- Muñoz-Balsa M.
- Del Rey-Granado Y.
- Garrido-Elustondo S.
- Tello-Bernabé M.-E.
- Ramírez-Puerta A.B.
- Orrego C.
Effectiveness and cost-effectiveness of a virtual community of practice to improve the empowerment of patients with ischaemic heart disease: study protocol of a randomised controlled trial.
BMJ Open. 2020; 10e037374https://doi.org/10.1136/bmjopen-2020-037374
[49]
]), or a multicomponent intervention to implement a clinical practice guideline (CPG) for systemic lupus erythematosus [- Prados-Torres A.
- del Cura-González I.
- Prados-Torres J.D.
- Muth C.
- Leiva-Fernández F.
- Lopez-Rodriguez J.A.
- González-Rubio F.
- MULTIPAP Study
Improving healthcare for patients with multimorbidity.
Br. J. Gen. Pract. 2020; 70 (bjgp20X711257)https://doi.org/10.3399/bjgp20X711257
[50]
].- Trujillo-Martín M.M.
- Ramallo-Fariña Y.
- del Pino-Sedeño T.
- Rúa-Figueroa Í.
- Trujillo-Martín E.
- Vallejo-Torres L.
- Imaz-Iglesia I.
- Sánchez-de-Madariaga R.
- de Pascual-Medina A.M.
- Serrano-Aguilar P.
Effectiveness and cost-effectiveness of a multicomponent intervention to implement a clinical practice guideline for systemic lupus erythematosus: protocol for a cluster-randomized controlled trial.
The implementation of PCC and SDM resources and procedures is still little investigated. By means of group consultation to relevant stakeholders, García-Altés et al. [
[11]
] have recently proposed a list of potential actions aimed at integrating SDM in public health services, from a macro, meso and micro perspective. Grandes et al. [[16]
] developed an implementation strategy, collaboratively with health care providers and community-based organisations, aimed at integrating health promotion in primary and community care [[16]
]. However, these initiatives have not still been applied in real practice. Spanish institutions also participate in the CHRODIS-PLUS European project, developing a methodological approach for implementing an integrated multimorbidity care model, which includes SDM as a core component [[51]
]. This project does include a post-implementation phase that will provide data about its feasibility, acceptability and effectiveness.- Palmer K.
- Carfì A.
- Angioletti C.
- Di Paola A.
- Navickas R.
- Dambrauskas L.
- Jureviciene E.
- Forjaz M.J.
- Rodriguez-Blazquez C.
- Prados-Torres A.
- Gimeno-Miguel A.
- Cano-del Pozo M.
- Bestué-Cardiel M.
- Leiva-Fernández F.
- Ferrer E.P.
- Carriazo A.M.
- Lama C.
- Rodríguez-Acuña R.
- Cosano I.
- Bedoya-Belmonte J.J.
- Liseckiene I.
- Barbolini M.
- Txarramendieta J.
- Keenoy E. de M.
- Fullaondo A.
- Rijken M.
- Onder G.
A Methodological Approach for Implementing an Integrated Multimorbidity Care Model: Results from the Pre-Implementation Stage of Joint Action CHRODIS-PLUS.
Int. J. Environ. Res. Public Health. 2019; 16https://doi.org/10.3390/IJERPH16245044
Institutions promoting SDM and Patient Decision Aids
In Spain there are no national standards for the certification of PtDAs, although it is recommended to follow the standards of the International Patient Decision Aid Standards (IPDAS) Collaboration [
[52]
]. Some Health Technology Agencies included in RedETS, from regions such as Canary Islands, Catalonia, Andalusia and Madrid, have developed and implemented PtDAs for different specific conditions, making them available on their websites.- Elwyn G.
- O’Connor A.
- Stacey D.
- Volk R.
- Edwards A.
- Coulter A.
- Thomson R.
- Barratt A.
- Butow P.
- Barry M.
- Mulley A.G.
- Sepucha K.
- Bernstein S.
- Clarke A.
- Entwistle V.
- Feldman-Stewart D.
- Holmes-Rovner M.
- Holmes-Rovner M.
- Llewellyn-Thomas H.
- Moumjid N.
- Ruland C.
- Sykes A.
- Whelan T.
Developing a quality criteria framework for patient decision aids: Online international Delphi consensus process.
GuiaSalud (www.guiasalud.es), the CPGs library of the Spanish NHS, is working on the creation of a catalogue of PtDAs. In addition to these public institutions, several PtDAs have been developed and evaluated in research studies. Additionally, given the growing ethical interest in patient empowerment, other public and private initiatives have been promoted to provide citizens, patients, relatives and caregivers with evidence-based information, which allow them to manage their conditions in the most appropriate way and taking their preferences into account. Appendix A shows examples of some of these initiatives to promote patient or citizen empowerment and SDM in Spain.
Link between patient decision aids and clinical practice guidelines
It is necessary to facilitate the use of CPGs in SDM processes, and complement them with PtDAs in those situations in which the effective incorporation of the patient's values and preferences are especially relevant. In 2017, a systematic review of the literature and a qualitative study with in-depth interviews, carried out by RedETS aimed to collect and analyse the perceptions of experts in relation to directly link the CPGs and PtDAs [
[53]
]. Based on this previous work, a practical methodological handbook for the application of the CPG recommendations to SDM has been developed. This handbook, which is expected to be published in 2022, aims to provide a standardized methodology to integrate SDM and PtDAs into the process of developing CPG recommendations, with the ultimate goal of facilitating their use in clinical practice [L. Perestelo-Pérez, F. Salcedo-Fernández, Y. Toledo-Chávarri, A, Álvarez-Pérez, M. Vicente-Edo, A. Abt-Sacks, M. Trujillo, T. del Pino, P. Alonso-Coello, A. Rivero-Santana, B. Rodríguez-Martín, L. Cuéllar-Pompa, P. Serrano-Aguilar, Desarrollo de herramientas de ayuda para la toma de decisiones compartida derivadas de las recomendaciones de las guías de práctica clínica, Ministerio de Sanidad, Servicios Sociales e Igualdad. Servicio de Evaluación del Servicio Canario de la Salud. Informes de Evaluación de Tecnologías Sanitarias, 2017.
[54]
].An example of linking PtDAs and CPGs comes from the update of a CPG for Generalized Anxiety Disorder (GAD). The Evaluation Unit of the Canary Islands Health Service (SESCS), in collaboration with GuíaSalud, has developed a PtDA, whose results will be available on the PyDeSalud platform (https://pydesalud.com/trastorno-de-ansiedad-generalizada/).
Person centred care and shared decision making in medical education and training for healthcare professionals
Education and training concerning the principles of PCC and SDM are being increasingly included as part of the curricula in medical and nursing education in Spain, especially in the primary care setting [
[55]
]. Learning experiences with undergraduate medical and nursing students and resident healthcare professionals in PCC and SDM are being incorporated into course curricula. Many of the curriculum components identified as relating to PCC and SDM involve either a general mention of PCC or SDM within module/session outlines or the inclusion of concepts linked to PCC or SDM (e.g., patient activation, motivational interviewing, patient empowerment, self-management, (digital) health literacy, communication skills, and integrated care management in PCC medical home). However, there are wide differences between universities in the way PCC and SDM are included in both professional standards and curricula. This means that the standardised and generalised incorporation of SDM and PCC into Spanish healthcare professionals’ education remains a challenge.Other relevant initiatives are being put into practice, such as short courses, workshops and summer courses. An example of this is the course offered by the Autonomous University of Madrid and the Jimenez Diaz Foundation, in collaboration with other European universities. Likewise, the initiatives promoted by the professionals of the Women's Health Institute of the Hospital Universitario Clinico San Carlos de Madrid, have set up a SDM consultation with patients on the surgical treatment of breast cancer, whereby patients can assess the available surgical options together with the multidisciplinary medical team. At a research level, there are examples of training programs for patients and healthcare professionals including the component of SDM [
37
, - Hernández-Leal M.J.
- Codern-Bové N.
- Pérez-Lacasta M.J.
- Cardona A.
- Vidal-Lancis C.
- Carles-Lavila M.
Development of support material for health professionals who are implementing Shared Decision-making in breast cancer screening: validation using the Delphi technique.
BMJ Open. 2022; 12e052566https://doi.org/10.1136/bmjopen-2021-052566
56
, - Bermejo-Caja C.J.
- Koatz D.
- Orrego C.
- Perestelo-Pérez L.
- González-González A.I.
- Ballester M.
- Pacheco-Huergo V.
- Del Rey-Granado Y.
- Muñoz-Balsa M.
- Ramírez-Puerta A.B.
- Canellas-Criado Y.
- Pérez-Rivas F.J.
- Toledo-Chávarri A.
- Martínez-Marcos M.
- Alejo-Díaz-Zorita C.
- Barbero-Macías C.A.
- Borrell-Punzón F.
- Bueno-Rodriguez B.
- Colmena-Martin B.
- Del Valle-De Joz I.
- Gamboa-Puñal J.C.
- García-Valverde C.
- Gómez-Garzón L.M.
- Gómez-López A.
- Hernaz-Guijo A.
- Herrera-León W.N.
- Iniesta-González I.
- Leza-Leza M.
- Melchor-Canelo M.A.
- Muñoz-Quirós-Aliaga S.
- Oria-Fernández Á.
- Pertierra-Galindo N.
- Prieto-Barbosa M.D.
- Robledo-Vázquez M.
- Ruiz-López M.
- Sánchez-Cruz M.C.
- Sánchez-De-Eusebio M.Á.
- Seijas-Martínez-Echevarría M.J.
- Tovar-García C.P.
- Vicente-Diez J.I.
- Villanueva-Sanz C.
Acceptability and feasibility of a virtual community of practice to primary care professionals regarding patient empowerment: a qualitative pilot study, BMC Health Serv.
Res. 2019; 19https://doi.org/10.1186/S12913-019-4185-Z
57
].- González-González A.I.
- Orrego C.
- Perestelo-Perez L.
- Bermejo-Caja C.J.
- Mora N.
- Koatz D.
- Ballester M.
- del Pino T.
- Pérez-Ramos J.
- Toledo-Chavarri A.
- Robles N.
- Pérez-Rivas F.J.
- Ramírez-Puerta A.B.
- Canellas-Criado Y.
- del Rey-Granado Y.
- Muñoz-Balsa M.J.
- Becerril-Rojas B.
- Rodríguez-Morales D.
- Sánchez-Perruca L.
- Vázquez J.R.
- Aguirre A.
Effectiveness of a virtual intervention for primary healthcare professionals aimed at improving attitudes towards the empowerment of patients with chronic diseases: study protocol for a cluster randomized controlled trial (e-MPODERA project).
Trials. 2017; 18https://doi.org/10.1186/S13063-017-2232-9
Formal measurement of the process of shared decision making
Although the authors have not found specific information on quality indicators of SDM performance, progress has been made in the inclusion of aspects related to PCC in the evaluation of health service provision. This is the case of some Health Departments in the different Spanish autonomous regions, which have recognised the need to broaden the criteria for evaluating the quality of healthcare services. Thus, criteria such as patient empowerment and the promotion of greater citizen participation are proposed. In this regard, most Spanish hospitals have included, in their institutional policies and strategic plans, good practice guides, in which the central axis is the humanisation of healthcare. The main objective of these actions is to translate the postulates of PCC into practice, as it is based on the premise that this approach offers more favourable conditions for the correct implementation of SDM, both at the individual and collective level. Some examples of these strategies, in the public and private context, are the Hospital Clinic of Barcelona Strategy Plan [
[58]
], the Humanization Plan of the Junta de Andalucía [Plan estratégico 2016-2020 (NUCLI) | Hospital Clínic Barcelona, (n.d.). https://www.clinicbarcelona.org/asistencia/plan-estrategico (accessed March 9, 2022).
[59]
], the Guide of Good Practices of San Juan de Dios Hospital [Consejería de Salud y Familias, Plan de Humanización del Sistema Sanitario Público de Andalucía, Sevilla, 2021. https://www.juntadeandalucia.es/export/drupaljda/Plan Humanización SSPA_v12042021.pdf (accessed March 9, 2022).
[60]
], the Humanization of services in San Roque Hospitals (Canary Islands) [Área de Humanización, Guía de Buenas Prácticas, Córdoba, n.d. www.hsjdcordoba.sjd.es (accessed March 9, 2022).
[61]
], and the Humanization Plan for the Community of Madrid [Hospitales San Roque apuesta por la humanización de sus servicios | Hospitales Universitarios San Roque, (n.d.). https://hospitalessanroque.com/es/noticias/hospitales-san-roque-apuesta-por-la-humanizacion-de-sus-servicios (accessed March 9, 2022).
[62]
], among others.Dirección General de Humanización y Atención al Paciente, Plan de humanización de la asistencia sanitaria 2016-2019. Informe de Evaluación Final., Madrid, 2019. https://www.comunidad.madrid/transparencia/sites/default/files/plan/document/informe_evaluacion_final_plan_de_humanizacion.pdf (accessed March 9, 2022).
In addition, with the above health care model focused on the humanisation, the level of excellence of healthcare has been evaluated as a starting point in relation to five areas: leadership for humanisation, management based on humanisation, PCC, the care of the professional and the humanisation of spaces. Another example of quality indicators of PCC interventions is the SPICA framework, which is integrated into the Canary Islands strategy for managing chronic diseases. This framework proposes actions and indicators to enhance integration and continuity between and across levels of care.
Collaborative projects and international networking
In 2013, the emerging Ibero-American Network for SDM (REDES, REd Iberoamericana para la Toma de DEcisiones Compartidas en Salud) of healthcare professionals and researchers from hospitals, health centres, health services evaluation units and universities in Latin America and the Caribbean, Spain and Portugal, was formed. The experience of expert researchers in SDM from different countries and contexts (i.e., clinical practice, research, and academia) endows the creation of this network, with a unique character. REDES aims to promote research into SDM and the creation of PtDAs, as well as their implementation in clinical practice, in order to improve health care and the satisfaction of users and healthcare professionals in the Ibero-American context. Following these objectives, REDES provides a link that facilitates the exchange of ideas among its members, in order to promote the field of research on SDM in those Spanish-speaking countries where this line of work is still unknown or is in need of support for its expansion.
Furthermore, Spanish researchers participate in various international projects that seek to promote or implement interventions for SDM. The topics addressed within the European Union are varied, such as the construction of methodological frameworks for implementing an Integrated Multimorbidity Care Model in local health systems (Joint Action CHRODIS-PLUS), the development of massive online open courses (MOOCs) to improve digital health literacy skills of European citizens as an open education initiative for all (IC-Health project), among others. Different publications report the results of these collaborations [
27
, - Álvarez-Pérez Y.
- Perestelo-Pérez L.
- Rivero-Santanta A.
- Torres-Castaño A.
- Toledo-Chávarri A.
- Duarte-Díaz A.
- Mahtani-Chugani V.
- Marrero-Díaz M.D.
- Montanari A.
- Tangerini S.
- González-González C.
- Perello M.
- Serrano-Aguilar P.
Co-Creation of Massive Open Online Courses to Improve Digital Health Literacy in Pregnant and Lactating Women.
28
, - Alvarez-Perez Y.
- Perestelo-Perez L.
- Rivero-Santana A.
- Wagner A.M.
- Torres-Castaño A.
- Toledo-Chávarri A.
- Duarte-Díaz A.
- Alvarado-Martel D.
- Piccini B.
- Van den Broucke S.
- Vandenbosch J.
- González-González C.
- Perello M.
- Serrano-Aguilar P.
Cocreation of Massive Open Online Courses to Improve Digital Health Literacy in Diabetes: Pilot Mixed Methods Study.
JMIR Diabetes. 2021; 6e30603https://doi.org/10.2196/30603
39
, - Humphries B.
- León-García M.
- Bates S.
- Guyatt G.
- Eckman M.
- D’Souza R.
- Shehata N.
- Jack S.
- Alonso-Coello P.
- Xie F.
Decision Analysis in Shared decision making for Thromboprophylaxis during Pregnancy (DASH-TOP): a sequential explanatory mixed methods pilot study protocol.
BMJ Open. 2021; 11e046021https://doi.org/10.1136/BMJOPEN-2020-046021
51
, - Palmer K.
- Carfì A.
- Angioletti C.
- Di Paola A.
- Navickas R.
- Dambrauskas L.
- Jureviciene E.
- Forjaz M.J.
- Rodriguez-Blazquez C.
- Prados-Torres A.
- Gimeno-Miguel A.
- Cano-del Pozo M.
- Bestué-Cardiel M.
- Leiva-Fernández F.
- Ferrer E.P.
- Carriazo A.M.
- Lama C.
- Rodríguez-Acuña R.
- Cosano I.
- Bedoya-Belmonte J.J.
- Liseckiene I.
- Barbolini M.
- Txarramendieta J.
- Keenoy E. de M.
- Fullaondo A.
- Rijken M.
- Onder G.
A Methodological Approach for Implementing an Integrated Multimorbidity Care Model: Results from the Pre-Implementation Stage of Joint Action CHRODIS-PLUS.
Int. J. Environ. Res. Public Health. 2019; 16https://doi.org/10.3390/IJERPH16245044
63
, - Burmester G.-R.
- Álvaro-Gracia J.M.
- Betteridge N.
- Calvo Alén J.
- Combe B.
- Durez P.
- Fautrel B.
- Ferreira R.J.O.
- Gabay C.
- Iagnocco A.
- Montecucco C.
- Østergaard M.
- Ramiro S.
- Rubbert-Roth A.
- Stamm T.
- Szekanecz Z.
- Taylor P.C.
- van de Laar M.
Evolving the comprehensive management of rheumatoid arthritis: identification of unmet needs and development of practical and educational tools.
Clin. Exp. Rheumatol. 2020; 38: 1056-1067
64
, - Bates S.M.
- Alonso-Coello P.
- Tikkinen K.A.O.
- Ebrahim S.
- Lopes L.C.
- McDonald S.D.
- Zhou Q.
- Akl E.A.
- Neumann I.
- Jacobsen A.F.
- Zhang Y.
- Santamaría A.
- Annichino-Bizzacchi J.M.
- Sandset P.M.
- Bitar W.
- Eckman M.H.
- Guyatt G.H.
Women’s values and preferences and health state valuations for thromboprophylaxis during pregnancy: A cross-sectional interview.
65
].- Perestelo-Perez L.
- Torres-Castaño A.
- González-González C.
- Alvarez-Perez Y.
- Toledo-Chavarri A.
- Wagner A.
- Perello M.
- Van Der Broucke S.
- Díaz-Meneses G.
- Piccini B.
- Rivero-Santana A.
- Serrano-Aguilar P.
IC-Health Project: Development of MOOCs to Promote Digital Health Literacy: First Results and Future Challenges.
Challenges and future perspectives of shared decision making in Spain
The PCC and SDM model is increasingly taken in consideration in the Spanish NHS, research centres, scientific associations and patient organisations. However, the initiatives proposed are very heterogeneous in terms of their scope and implementation between the different regions, reflecting the decentralization of the Spanish health system. It is necessary to develop a national strategy specifically aimed at this model of care, which establishes general actions and implementation protocols, as well as process quality indicators.
According to Abrams et al. [
[66]
], the current Covid-19 pandemic has created both challenges and opportunities for relevant changes in delivering care, as system adaptations influence the healthcare professional-patient relationship. Although social distancing and health service reallocation can interfere with preference for an in-person visit, these measures also provide an avenue to study and implement virtual SDM processes. Communicating risk at a time of heightened uncertainty may pose a barrier to SDM engagement but provides the opportunity to foster a PCC within a more personalised context. Social media influence during the coronavirus/Covid-19-pandemic has resulted in an “infodemic” but highlights the importance of patient engagement. The pandemic has changed how we deliver care but allows us to re-evaluate common practices and enhance the effectiveness of our management strategies.Conflict of interest
The authors declare that there is no conflict of interest.
CRediT author statement
Lilisbeth Perestelo-Perez: Conceptualization, Methodology, Resources, Writing-Original draft preparation, Writing-Review and Editing; Visualization, Supervision; Amado Rivero-Santana: Methodology, Writing-Original draft preparation, Writing-Review and Editing, Supervision; Yolanda Alvarez-Perez: Methodology, Writing-Original draft preparation, Writing-Review and Editing, Visualization; Andrea Duarte-Díaz: Methodology, Writing-Original draft preparation, Writing-Review and Editing; Visualization; Vanesa Ramos-García: Methodology, Writing-Original draft preparation, Writing-Review and Editing; Visualization; Alezandra Torres-Castaño: Methodology, Writing-Original draft preparation, Writing-Review and Editing, Visualization; Analía Abt-Sacks: Methodology, Writing-Original draft preparation, Writing-Review and Editing, Visualization; Ana Toledo-Chavarri: Writing-Review and Editing; Pablo Alonso-Coello: Writing-Review and Editing; Carola Orrego: Writing-Review and Editing; Pedro Serrano-Aguilar: Conceptualization, Writing-Original draft preparation, Writing-Review and Editing.
Appendix A. Supplementary data
The following are the Supplementary data to this article:
- Supplementary data 1
References
Ministry of Health Social Services and Equality, National Health System of Spain, 2012 [Internet monograph], Madrid, 2012. https://www.sanidad.gob.es/organizacion/sns/docs/sns2012/SNS012__Ingles.pdf.
- The Spanish Network of Agencies for Health Technology Assessment and Services of the National Health System (RedETS).Int. J. Technol. Assess. Health Care. 2019; 35: 176-180https://doi.org/10.1017/S0266462319000205
- Building primary care in a changing Europe.European Observatory on Health Systems and Policies, United Kingdom2015
Boletín Oficial del Estado, Ley 41/2002 de 14 de noviembre, Básica Reguladora de la Autonomía del Paciente y de Derechos y Obligaciones en Materia de Información y Documentación clínica., 2002. https://www.boe.es/eli/es/l/2002/11/14/41/con.
Boletín Oficial del Estado, Convenio para la Protección de los Derechos Humanos y la Dignidad del Ser Humano con respecto a las aplicaciones de la Biología y la Medicina. BOE de 20-10-1999, corregido según BOE de 11/11/1999., 1999.
Boletín Oficial del Estado, Marco Estratégico para la Atención Primaria y Comunitaria, 2019. https://www.boe.es/boe/dias/2019/05/07/pdfs/BOE-A-2019-6761.pdf.
- Plan Integral de Alzehimer y otras Demencias.Ministerio de Sanidad, Consumo y Bienestar Social, 2019
Boletín Oficial del Estado, La Ley Orgánica 3/2021, de 24 de marzo, de regulación de la eutanasia reconoce el derecho a la autonomía del paciente, 2021. https://www.boe.es/eli/es/lo/2021/03/24/3.
Ministerio de Igualdad, Anteproyecto de ley para la igualdad real y efectiva de las personas trans y para la garantía de los derechos de las personas LGTBI [Servicios/Participación pública/Audiencia e información], 2021. https://www.igualdad.gob.es/servicios/participacion/audienciapublica/Paginas/2021/apl-igualdad-efectiva-persona-trans-derechos-lgtbi.aspx (accessed March 7, 2022).
- Información e Innovación para el SNS.Estrategia de Salud Digital, Sistema Nacional de Salud, 2021
- Priorización de medidas para la consolidación de la toma de decisiones compartidas en las prestaciones del Sistema Nacional de Salud español.Gac. Sanit. 2019; 33: 408-414https://doi.org/10.1016/j.gaceta.2018.04.017
EIT Health, Patient Innovation Bootcamp, Who Better than Patients Their Caregivers to Have That Crucial Insight Which Leads to True Prod. Innov., 2021. https://eithealth.eu/programmes/patient-innovation-bootcamp/?utm_source=Google&utm_medium=CPC&utm_campaign=Patient&utm_id=Patient&utm_term=CPC&utm_content=1&gclid=Cj0KCQiA95aRBhCsARIsAC2xvfxPJ1F_qiMh_nU-2z3hwaGswT7FZ0dTbZz3wyn6wXqO7Gb9LSBOe28aAmm3EALw_wcB (accessed March 7, 2022).
L. Perestelo-Pérez, A. Rivero-Santana, A. Abt-Sacks, A. Toledo-Chavarri, N. Brito, Y. Álvarez-Pérez, N. González-Hernández, P. Serrano-Aguilar, Patient Empowerment and Involvement in Research, in: 2017: pp. 249–264. https://doi.org/10.1007/978-3-319-67144-4_15.
- Toward a Strategy to Involve Patients in Health Technology Assessment in Spain.Int. J. Technol. Assess. Health Care. 2019; 35: 92-98https://doi.org/10.1017/S0266462319000096
- Patient participation in a Clinical Guideline Development for Systemic Lupus Erythematosus.Patient Educ. Couns. 2015; 98: 1156-1163https://doi.org/10.1016/j.pec.2015.05.022
- Collaborative modeling of an implementation strategy: a case study to integrate health promotion in primary and community care.BMC Res. Notes. 2017; 10: 699https://doi.org/10.1186/s13104-017-3040-8
- Patient involvement in health research: A contribution to a systematic review on the effectiveness of treatments for degenerative ataxias.Soc. Sci. Med. 2009; 69: 920-925https://doi.org/10.1016/j.socscimed.2009.07.005
- Designing for usability: key principles and what designers think.Commun. ACM. 1985; 28: 300-311https://doi.org/10.1145/3166.3170
- Promoting citizen participation in healthcare through PyDEsalud.com.Gac. Sanit. 2013; 27: 466-467https://doi.org/10.1016/J.GACETA.2013.01.007
- User Involvement in the Design and Development of Patient Decision Aids and Other Personal Health Tools: A Systematic Review.Med. Decis. Mak. 2021; 41: 261-274https://doi.org/10.1177/0272989X20984134
- A systematic development process for patient decision aids.BMC Med. Inform. Decis. Mak. 2013; 13: S2https://doi.org/10.1186/1472-6947-13-S2-S2
- Development of a decisional flowchart for meaningful patient involvement in Health Technology Assessment.Int. J. Technol. Assess. Health Care. 2021; 37e3https://doi.org/10.1017/S0266462320001956
- Evaluation of patient involvement strategies in health technology assessment in Spain: the viewpoint of HTA researchers.Int. J. Technol. Assess. Health Care. 2021; 37e25https://doi.org/10.1017/S0266462320000586
- Information needs and research priorities for fertility preservation in women with breast cancer: patients and experts’ perspectives.Eur. J. Cancer Care (Engl). 2021; 30https://doi.org/10.1111/ecc.13359
- Shared Decision-Making and Information Needs among People with Generalized Anxiety Disorder.Eur. J. Investig. Heal. Psychol. Educ. 2021; 11: 423-435https://doi.org/10.3390/ejihpe11020031
- Designing a Person-Centred Integrated Care Programme for People with Complex Chronic Conditions: A Case Study from Catalonia.Int. J. Integr. Care. 2021; 21: 22https://doi.org/10.5334/ijic.5653
- Co-Creation of Massive Open Online Courses to Improve Digital Health Literacy in Pregnant and Lactating Women.Int. J. Environ. Res. Public Health. 2022; 19: 913https://doi.org/10.3390/ijerph19020913
- Cocreation of Massive Open Online Courses to Improve Digital Health Literacy in Diabetes: Pilot Mixed Methods Study.JMIR Diabetes. 2021; 6e30603https://doi.org/10.2196/30603
- Co-Design Process of a Virtual Community of Practice for the Empowerment of People with Ischemic Heart Disease.Int. J. Integr. Care. 2020; 20: 9https://doi.org/10.5334/ijic.5514
- Empowering patients to co‐design Covid‐19 responses: the role of online health communities.R&D Manag. 2022; 52: 391-406https://doi.org/10.1111/radm.12516
- Patient Decision Aid (PDA) for Patients with Rheumatoid Arthritis Reduces Decisional Conflict and Improves Readiness for Treatment Decision Making.Patient - Patient-Centered Outcomes Res. 2020; 13: 57-69https://doi.org/10.1007/s40271-019-00381-y
- The effectiveness of a web-based decision aid for patients with hip osteoarthritis: study protocol for a randomized controlled trial.Trials. 2020; 21: 736https://doi.org/10.1186/s13063-020-04661-z
- The effectiveness of a digital shared decision-making tool in hormonal contraception during clinical assessment: study protocol of a randomized controlled trial in Spain.BMC Public Health. 2019; 19: 1224https://doi.org/10.1186/s12889-019-7572-9
- Effectiveness of a web-based decision aid for patients with generalised anxiety disorder: a protocol for a randomised controlled trial.BMJ Open. 2020; 10e039956https://doi.org/10.1136/bmjopen-2020-039956
- Shared Decision-Making in Chronic Patients with Polypharmacy: An Interventional Study for Assessing Medication Appropriateness.J Clin. Med. 2019; 8: 904https://doi.org/10.3390/jcm8060904
- Joint Healthcare Professional and Patient Development of Communication Tools to Improve the Standard of MS Care.Adv. Ther. 2019; 36: 3238-3252https://doi.org/10.1007/S12325-019-01071-9/TABLES/4
- Development of support material for health professionals who are implementing Shared Decision-making in breast cancer screening: validation using the Delphi technique.BMJ Open. 2022; 12e052566https://doi.org/10.1136/bmjopen-2021-052566
- Feasibility and acceptability of personalised breast cancer screening (DECIDO study): protocol of a single-arm proof-of-concept trial.BMJ Open. 2020; 10e044597https://doi.org/10.1136/bmjopen-2020-044597
- Decision Analysis in Shared decision making for Thromboprophylaxis during Pregnancy (DASH-TOP): a sequential explanatory mixed methods pilot study protocol.BMJ Open. 2021; 11e046021https://doi.org/10.1136/BMJOPEN-2020-046021
- Psychometric properties of the Shared Decision-Making Questionnaire (SDM-Q-9) in oncology practice.Int. J. Clin. Heal. Psychol. 2018; 18: 143-151https://doi.org/10.1016/J.IJCHP.2017.12.001
- La toma de decisiones compartidas desde la perspectiva del paciente oncológico: roles de participación y valoración del proceso.An. Sist. Sanit. Navar. 2017; 40: 25-33
- Validation of SDM-Q-Doc Questionnaire to measure shared decision-making physician’s perspective in oncology practice.Clin. Transl. Oncol. 2017; 19: 1312-1319https://doi.org/10.1007/S12094-017-1671-9
- Physicians’ awareness and assessment of shared decision making in oncology practice.Rev Esp Salud Publica. 2019; 93: 1-12
- Psychometric properties of the SDM-Q-9 questionnaire for shared decision-making in multiple sclerosis: Item response theory modelling and confirmatory factor analysis.Health Qual. Life Outcomes. 2017; 15: 1-6https://doi.org/10.1186/S12955-017-0656-2/FIGURES/1
- Assessment of shared decision-making in community mental health care: Validation of the CollaboRATE.Int. J. Clin. Heal. Psychol. 2020; 20: 262-270https://doi.org/10.1016/J.IJCHP.2020.06.004
- Patient-reported outcome measures for knowledge transfer and behaviour modification interventions in type 2 diabetes-the INDICA study: a multiarm cluster randomised controlled trial.BMJ Open. 2021; 11: 50804https://doi.org/10.1136/bmjopen-2021-050804
- Comparing the effectiveness and cost-effectiveness of self-management interventions in four high-priority chronic conditions in Europe (COMPAR-EU): a research protocol.BMJ Open. 2020; 10e034680https://doi.org/10.1136/bmjopen-2019-034680
- Effectiveness and cost-effectiveness of a virtual community of practice to improve the empowerment of patients with ischaemic heart disease: study protocol of a randomised controlled trial.BMJ Open. 2020; 10e037374https://doi.org/10.1136/bmjopen-2020-037374
- Improving healthcare for patients with multimorbidity.Br. J. Gen. Pract. 2020; 70 (bjgp20X711257)https://doi.org/10.3399/bjgp20X711257
- Effectiveness and cost-effectiveness of a multicomponent intervention to implement a clinical practice guideline for systemic lupus erythematosus: protocol for a cluster-randomized controlled trial.BMC Health Serv. Res. 2019; 19: 783https://doi.org/10.1186/s12913-019-4589-9
- A Methodological Approach for Implementing an Integrated Multimorbidity Care Model: Results from the Pre-Implementation Stage of Joint Action CHRODIS-PLUS.Int. J. Environ. Res. Public Health. 2019; 16https://doi.org/10.3390/IJERPH16245044
- Developing a quality criteria framework for patient decision aids: Online international Delphi consensus process.Br. Med. J. 2006; 333: 417-419https://doi.org/10.1136/BMJ.38926.629329.AE
L. Perestelo-Pérez, F. Salcedo-Fernández, Y. Toledo-Chávarri, A, Álvarez-Pérez, M. Vicente-Edo, A. Abt-Sacks, M. Trujillo, T. del Pino, P. Alonso-Coello, A. Rivero-Santana, B. Rodríguez-Martín, L. Cuéllar-Pompa, P. Serrano-Aguilar, Desarrollo de herramientas de ayuda para la toma de decisiones compartida derivadas de las recomendaciones de las guías de práctica clínica, Ministerio de Sanidad, Servicios Sociales e Igualdad. Servicio de Evaluación del Servicio Canario de la Salud. Informes de Evaluación de Tecnologías Sanitarias, 2017.
- Aplicación de las recomendaciones de las guías de práctica clínica a la toma de decisiones compartidas.GuiaSalud, Ministerio de Sanidad, 2022
The Economist intelligence Unit Limited, Adoption of Patient-Centred Care: Findings and Methodology. Research Report, 2019.
- Acceptability and feasibility of a virtual community of practice to primary care professionals regarding patient empowerment: a qualitative pilot study, BMC Health Serv.Res. 2019; 19https://doi.org/10.1186/S12913-019-4185-Z
- Effectiveness of a virtual intervention for primary healthcare professionals aimed at improving attitudes towards the empowerment of patients with chronic diseases: study protocol for a cluster randomized controlled trial (e-MPODERA project).Trials. 2017; 18https://doi.org/10.1186/S13063-017-2232-9
Plan estratégico 2016-2020 (NUCLI) | Hospital Clínic Barcelona, (n.d.). https://www.clinicbarcelona.org/asistencia/plan-estrategico (accessed March 9, 2022).
Consejería de Salud y Familias, Plan de Humanización del Sistema Sanitario Público de Andalucía, Sevilla, 2021. https://www.juntadeandalucia.es/export/drupaljda/Plan Humanización SSPA_v12042021.pdf (accessed March 9, 2022).
Área de Humanización, Guía de Buenas Prácticas, Córdoba, n.d. www.hsjdcordoba.sjd.es (accessed March 9, 2022).
Hospitales San Roque apuesta por la humanización de sus servicios | Hospitales Universitarios San Roque, (n.d.). https://hospitalessanroque.com/es/noticias/hospitales-san-roque-apuesta-por-la-humanizacion-de-sus-servicios (accessed March 9, 2022).
Dirección General de Humanización y Atención al Paciente, Plan de humanización de la asistencia sanitaria 2016-2019. Informe de Evaluación Final., Madrid, 2019. https://www.comunidad.madrid/transparencia/sites/default/files/plan/document/informe_evaluacion_final_plan_de_humanizacion.pdf (accessed March 9, 2022).
- Evolving the comprehensive management of rheumatoid arthritis: identification of unmet needs and development of practical and educational tools.Clin. Exp. Rheumatol. 2020; 38: 1056-1067
- Women’s values and preferences and health state valuations for thromboprophylaxis during pregnancy: A cross-sectional interview.Thromb. Res. 2016; 140: 22-29https://doi.org/10.1016/J.THROMRES.2015.12.015
- IC-Health Project: Development of MOOCs to Promote Digital Health Literacy: First Results and Future Challenges.Sustainability. 2020; 12: 6642https://doi.org/10.3390/su12166642
- The Challenges and Opportunities for Shared Decision Making Highlighted by COVID-19.J. Allergy Clin. Immunol. Pract. 2020; 8: 2474-2480.e1https://doi.org/10.1016/j.jaip.2020.07.003
Article info
Publication history
Published online: May 25, 2022
Accepted:
April 15,
2022
Received in revised form:
April 13,
2022
Received:
March 15,
2022
Identification
Copyright
© 2022 Published by Elsevier GmbH.
