Toledo-Chávarri A, et al. Co-Design Process of a Virtual Community of Practice for the Empowerment of People with Ischemic Heart Disease. International Journal of Integrated Care, 2020; 20(4): 9, 1–13. DOI: https://doi.org/10.5334/ijic.5514 RESEARCH AND THEORY Co-Design Process of a Virtual Community of Practice for the Empowerment of People with Ischemic Heart Disease Ana Toledo-Chávarri*,†, Vanesa Ramos-García*, Débora Koatz†,‡,§, Alezandra Torres-Castaño*, Lilisbeth Perestelo-Pérez†,‖, Ana Belén Ramírez-Puerta¶, María-Eugenia Tello-Bernabé†,**, Juan-Manuel García-García**, Javier García-García††, Valeria Pacheco-Huergo‡,‡‡, Carola Orrego†,‡,§, Ana Isabel González-González†,**, §§ and e-mpodera group Introduction: Virtual Communities of Practices (vCoP) offer patients the possibility to interact and share tools and knowledge necessary for their empowerment. This paper describes the co-design process of a vCoP for the empowerment of people with ischemic heart disease (IHD). Methods: We used a modified experience-based design approach to co-design the vCoP in collaboration with people with IHD and health professionals consisting of two phases: exploratory and development phase. Data collection techniques included listening labs, workshops, and online participation. Results: Twenty-five people with IHD and ten health professionals participated. Experiences and needs for empowerment in IHD were identified in the exploratory phase allowing for the development of a Patient Journey Map. In the development phase, people with IHD prioritized needs to be addressed by the vCoP content framework in addition to content proposals. Discussion: The Patient Journey Map helped to easily visualize the empowerment needs of people with IHD and it might be transferable for the development of other people-centred interventions. The co- design process also allowed the development of training materials adapted to the priorities of people with IHD. Conclusion: A people-centred co-design process of a vCoP may facilitate the empowerment of people with IHD. Keywords: empowerment; virtual Communities of Practices; Ischemic heart disease; patient centred care; consumer involvement; co-design Introduction IHD struggle when trying to reduce their cardiovascular Ischemic heart disease (IHD) is the main cause of prema- risk factors [5]. Secondary prevention of IHD for reduc- ture death among the population in Europe [1]. In Spain, ing the impact of the disease after its onset is complex approximately 30,000 people suffer a myocardial infarc- and challenging, thereby warranting the need to gain tion every year [2], and among those who survive, around deeper knowledge on how to facilitate long lasting life- 20% go through a secondary cardiovascular event in the style changes. first year [3]. Regular exercise, a healthy diet, smoking Patient empowerment has been recognized as a key fac- cessation, and the use of cardiovascular preventive drugs tor in improving health outcomes, increasing communica- are effective preventive actions that reduce mortality tion between patients and professionals, achieving better and re-infarction rates [4]. However, some people with adherence to treatment, and ensuring an efficient use of * Fundación Canaria Instituto de Investigación Sanitaria de ** Gerencia Asistencial de Atención Primaria, Servicio Madrileño Canarias (FIISC), Tenerife, ES de Salud, Madrid, ES † Red de Investigación en Servicios de Salud en Enfermedades †† Unidad de Calidad y Seguridad del Paciente. Hospital Crónicas (REDISSEC), ES Universitario Nuestra Señora de Candelaria, Tenerife, ‡ Avedis Donabedian Research Institute (FAD), Barcelona, ES Canarias, ES § Universitat Autónoma de Barcelona, Barcelona, ES ‡‡ Centro de Atención Primaria Turó, Instituto Catalán de la Salud, Barcelona, ES ‖ Servicio de Evaluación y Planificación del Servicio Canario de la Salud, Tenerife, ES §§ Institute of General Practice, Goethe University, Frankfurt, DE ¶ Unidad de Apoyo Técnico, Gerencia Asistencial de Atención Corresponding autor: Lilisbeth Perestelo-Pérez Primaria, Servicio Madrileño de Salud, Madrid, ES (lilisbeth.peresteloperez@sescs.es) Art. 9, page 2 of 13 Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for the Empowerment of People with Ischemic Heart Disease primary health care resources [6]. The Health 2020 policy showed that co-designed interventions can improve framework put forth by the World Health Organization health related outcomes both at individual and commu- (WHO) proposes strategies and action plans focused on nity levels, including physical health, healthy behaviours, investment in health through the empowerment of citi- self-efficacy, health service access and receipt, as well as zens [7]. In fact, a recent analysis on empowerment stated strengthen community relations. The co-design elements that “it is a process that enables patients to exert more influ- that had the greatest impact on the effectiveness included, ence over their individual health by increasing their capaci- accommodating the interventions to the needs and priori- ties to gain more control over issues they themselves define ties of their participants, and incorporating skills [17]. as important” [8]. In people with IHD, autonomy and self- This paper describes the co-design of a vCoP for the efficacy are considered relevant factors when planning empowerment of people with IHD, in collaboration with their cardiac rehabilitation plan [9]. It has been shown health professionals from primary and specialized care that when people with IHD are autonomous and self- and a team of researchers. This work was conducted as effective in managing their disease, they act to improve part of the e-mpodera2 project, a randomized controlled their lifestyle by adopting more preventive behaviours, trial that aims to evaluate the effectiveness and cost-effec- such as making appropriate food choices and getting reg- tiveness of the co-designed vCoP, as described herein, to ular physical exercise [10]. improve patient activation and other measures related Empowerment is also one of the principles of integrated with patient empowerment in people with IHD (Trial reg- care [11]. Coordination of care and services may improve istration: ClinicalTrials.gov, (NCT02757781), Registered by engaging people to actively participate in their care on 25 April 2016). process and in the coproduction of integrated care inter- ventions [12]. Research Methods A virtual community of practice (vCoP) can be defined This study has been funded by the Carlos III Health Insti- as a group of people with a common interest or problem tute (Instituto de Salud Carlos III) through the project who interact and share knowledge, learning together using “PI18/01404, PI18/01397, PI18/01333”, and co-funded an online platform that is developed on, and maintained by the European Regional Development Fund (ERDF) using the Internet. vCoPs offer the possibility to identify “A way of shaping Europe”. It was approved by ­Clinical and share resources and apply the tools and knowledge nec- Research Ethics Committees of Gregorio Marañón essary for empowerment [13]. Through collaborative learn- University Hospital in Madrid (Acta 08/2019), Nuestra ing the experiences and knowledge of members support Señora de Candelaria University Hospital in Santa Cruz the community, strengthen relationships, and help raise de Tenerife (CHUNSC_2019_05) and IDIAP Jordi Gol in ideas and innovation capacity in the area of interest [14]. Barcelona (19/053-P). The construction of knowledge is a social and interactive The present manuscript follows the reporting short process. In this sense, learning communities are composed checklist for PPI in research [18] (Additional file 1). of three essential aspects: i) the existence of a space, physi- Additional file 1. https://doi.org/10.5334/ijic.5514.s1 cal or online, to share and build knowledge and capacities; ii) the mutual support among its members characterized by Design collaboration, interaction, and a feeling of belonging that We used a modified experience-based design approach facilitates the sharing of knowledge and experiences; and [19] to co-design the e-mpodera2 vCoP intervention. The iii) the definition of learning as a process [15]. co-design process consisted of two sequential phases: i) Co-design of interventions or health services can seek exploratory phase, and ii) development phase. Specific to effectively improve care [16]. A systematic review and objectives, data collection techniques, participants, and meta-analysis of co-design research experiences [17] results for each phase are shown in Figure 1. Figure 1: Co-design process. Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for Art. 9, page 3 of 13 the Empowerment of People with Ischemic Heart Disease Specific Objectives showed interest in the study and who had participated in The co-design process objective was to develop a structure the previous research project e-mpodera1 [20, 21], which and content examples for the randomized control trial developed a vCoP for primary care health professionals vCoP. The specific objectives for each phase were: (general practitioners and practice nurses) to engage in patient empowerment. 1) The exploratory phase aimed: i) to identify different A convenience sample of health professionals was diagnosis and treatment paths for IHD; ii) to explore recruited from e-mpodera1 participants and members of short, medium and long-term treatments and the research team who were not engaged in the design points of contact for people with IHD represented or facilitation of the co-design process. They were invited through a Patient Journey Map; iii) to understand to participate in a focus group. Health professionals were the experiences and empowerment needs of people not actively recruited for the development phase work- with IHD; and iv) to assess the acceptability and shop, but participation was open for those wanting to usability of the e-mpodera2 online platform. contribute in the development of the vCoP. 2) The development phase sought: i) to prioritize Participation was voluntary. Participants were free to addressable empowerment needs; ii) to propose withdraw from the study at any time without affecting examples of contents for the vCoP; iii) to create the present or future medical treatment. e-mpodera2 vCoPs’ content framework for people with IHD; and iv) to pilot some of the proposed Data collection contents; and v) to continue the assessment of Facilitation for both phases was designed by a researcher the acceptability and usability of the e-mpodera2 specialized in PPI methods and conducted by a team of online platform. seven researchers with diverse experience in participation and qualitative research. Setting The study took place in the Spanish National Health Sys- Exploratory phase tem in three different regions in Spain: Canary Islands, This phase comprised an online focus group with health Catalonia and Madrid. professionals, three face-to-face listening labs with people with IHD in each of the included Spanish Regions (Canary Participants Islands, Catalonia, Madrid), and online participation Inclusion criteria (people with IHD) through the e-mpodera2 platform. Face-to-face labs were Age ≥ 18 years; diagnosis of IHD in the electronic carried out in a paediatric hospital facility in the Canary medical record; be willing to be a member of the group Islands, in a research centre in Cataluña and in a primary and attend meetings for 6 months (at least one of the care management facility in Madrid. two face-to-face meetings and participate in the online The online focus group with health professionals was an co-design group); be willing to use Facebook, WhatsApp, open discussion lead by a moderator and with an observer Telegram or email within the framework of the co-design taking notes of mentioned topics. Listening labs were process; have signed the informed consent and commit to workshops based on deep listening qualitative techniques participate in the study (Additional file 2). [22] where participants collaboratively drafted a Patient Additional file 2. https://doi.org/10.5334/ijic.5514.s2 Journey Map built with cardboards. We developed two semi-structured guides, one for the Exclusion criteria (people with IHD) online focus group with health professionals (Table 1), Low probability of cooperation in the study, situation of and the other one for the listening labs with people with displaced or being a temporary resident, institutionalized, IHD (Table 2). Listening labs were followed by online with a terminal illness, or a physical or mental disability participation in the e-mpodera2 platform where the rand- that limit their ability to comply with study requirements. omized controlled trial vCoP will be held, a gamified web 2.0 platform, with interactive learning content [20, 21]. Inclusion criteria (health professionals) The research team proposed two activities a week from 3rd General practitioners, practice nurses or cardiologists who May to 7th June 2019 and a moderator motivated people were members of the research team or had expertise in to comment, engage and participate. The description of cardiovascular diseases and/or patient empowerment. the online participation activities can be found in Table 3. They ought to participate as part of the focus group or the development workshop. Development phase We conducted three face-to-face development work- Exclusion criteria (health professionals) shops with people with IHD, one in each of the Spanish Not willing to participate in the study. Regions, followed by online participation in the e-mpodera2 platform. We used a semi-structured guide Sample and recruitment for the workshops (Table 4). In Madrid, two health pro- A purposive sample of people with IHD sought to include fessionals participated in the content development; maximum variation regarding age, gender and time from health professionals did not participate in the other two onset. Recruitment of people with IHD in each region was regions. Online participation consisted on the piloting conducted through IHD patient organizations and gen- of two co-designed contents each week between 10th eral practitioners, practice nurses, and cardiologists who June and 12th July 2019. Art. 9, page 4 of 13 Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for the Empowerment of People with Ischemic Heart Disease Table 1: Focus Group guide for the exploratory phase with health professionals. Presentation (5 min) Name of the professional, specialty and association with empowerment. Define the stages of the Patient Journey Map (5 min) We predefined 4 stages of IHD to take into account in the Patient Journey Map: pre-diagnosis, diagnosis, treatment and ­follow-up. What would the key moments within these stages be that define patient care (e.g. pre-diagnosis: tests before first symptoms)? For each stage (5 minutes per stage) What is happening right now? Where and how do patients access care? What should patients do at this time (basic clinical aspects)? Empowerment needs The European EMPATHiE project defines the empowered patient as one who “has control over the management of their disease/s on a daily basis, acts to improve their quality of life and has the necessary knowledge, skills, attitudes and self-perceptions to adjust their behaviour – and work in a partnership with others when necessary – to achieve optimal well-being.” The empowerment interventions are aimed at equipping patients (and their informal caregivers, when appropriate) with the ability to participate in decisions related to their disease to the degree they want, to become “co-managers” of their disease together with health professionals, develop self-confidence, self-esteem and skills to face the physical, emotional and social impact of the disease in their daily life. For each stage (less than 10 minutes per stage) What do you think are the main barriers to self-care and care in this stage? What do they need to empower themselves? What information do they need? Table 2: Listening labs guide for exploratory phase with people with IHD. 1. Presentation of the e-mpodera2 project and the dynamics of the workshop 2. Questions for each of the stages: Diagnosis, Long-term follow-up and Post diagnosis What happened?/Clinical experience Tell us your name and tell us briefly how your heart problem started (Diagnostic stage) Treatment/recommendations Who has performed rehabilitation? What was the experience with or without rehabilitation? (Post-diagnostic stage) Contact points (who?) What was the intervention and the recommendations? What happens outside the doctor? Work Who? Where? When? environment – family Emotions How was your life? Empowerment Needs What has changed? Barriers to empowerment What did you feel? What would you have liked to know? What would you have liked to be helped with? What problems did you face when taking care of yourself? 3. Present the Platform for online participation and the following phase of co-design IHD = Ischemic Heart Disease. Analyses all participants. Points of contact, what happened, and The Patient Journey Map was progressively co-developed treatment sections of the Patient Journey Map summa- with people with IHD and health professionals. A uni- rized both people with IHD and health professionals’ fied draft was created with information from the focus views; the feelings and empowerment needs were based group and the listening labs of the Exploratory phase. on the input gathered from people with IHD. Only peo- The research group reviewed participants input and pro- ple with IHD participated in the prioritization of their posed this unified version that was then reviewed by needs. Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for Art. 9, page 5 of 13 the Empowerment of People with Ischemic Heart Disease Table 3: Examples of online participation activities during the exploratory phase. Challenge 1: Starting here (from the beginning)- Onboarding How to use the platform (tutorial) and participants’ introduction the e-mpodera2 platform Challenge 2: To upload an image of your recovery from IHD We propose you to share photos that symbolize your experi- ence in the recovery process of heart disease. Find or take a picture that represents some moment of the process and comment it with the following questions Challenge 3: Healthy habits In your experience, what have been the most difficult times to maintain your diet, exercise and/or not smoke? Give an exam- ple of the moment/s in which you have skipped the recom- mendations of healthy habits and comment on those of your partner. How have you overcome similar temptations? Challenge 4: Reviewing the Patient Journey of IHD The Patient Journey Map is a scheme that aims to reflect a path followed by people with ischemic heart disease. It is a summary of what we talked about in the first face-to-face session. We would like you to review this draft version. What do you think? Does it reflect well the general experience of having ischemic heart disease? Do you miss something? Challenge 5: Communication skills During your IHD process, do you remember any time when you had communication problems about the disease with someone in your family, partner, friends and/or the nearest circle? Share some experience and make a suggestion to that of another participant IHD = ischemic heart disease. Table 4: Face-to-face Workshop Guide for development phase. 1. Summary of what was done and presentation of the workshop dynamics 2. Presentation of types of training resources of the virtual Community of Practice 3. Prioritization of empowerment needs 4. Proposals for training resources 5. Evaluation of the acceptability and usability of the e-mpodera2 platform To describe the experiences of people with IHD, we Spanish Regions (eight, six and eleven from the Canary reviewed and summarized the listening labs notes. Islands, Catalonia, and Madrid, respectively), and ten We developed the e-mpodera2 vCoP’s content framework health professionals (two, two, and six from the Canary for people with IHD by adapting the prioritized empow- Islands, Catalonia and Madrid, respectively) participated erment needs and the materials proposed by the partici- in the co-design process of the vCoP (Tables 5 and 6). pants based on the EMPATHiE Consortium dimensions for Seven additional people with IHD participated in one patient empowerment [23]. The EMPATHiE Consortium activity but were lost to follow-up, so they were not con- dimensions have 3 pillars: i) the health literacy pillar con- sidered full participants. The sample included people siders the skills needed to find, understand, appraise, and with IHD who showed strong knowledge and self-man- apply information related to health and care services; ii) agement skills (especially those who belonged to patient the self-management pillar aims to promote healthy life- organizations), as well as people with self-reported low style behaviours; and iii) the shared decision-making pil- health literacy with respect to IHD. On average, partici- lar which is defined as a decision-making process jointly pants with IHD were first diagnosed with IHD 5 years shared by patients and their health care providers. To prior to the study. evaluate the acceptability and usability of the e-mpodera2 The co-design process involved two phases: i) the platform, we analysed the participants insights provided exploratory phase, where the experiences and needs through open ended questions in development workshop for empowerment in IHD built the trajectory of care after the participants had used platform for the online for the condition and ii) the development phase, activities of the exploratory phase. where people with IHD prioritized the needs to be addressed by the vCoP, proposed training content Results for empowerment of people with IHD, facilitating We conducted the co-design process between March and the development of the e-mpodera2 vCoP’s content July 2019. Twenty-five people with IHD from the three framework. Art. 9, page 6 of 13 Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for the Empowerment of People with Ischemic Heart Disease Table 5: Characteristics of participants – people with IHD. Canary Islands Catalonia Madrid Total Gender n Female 1 1 3 5 Male 7 5 8 20 Age (years) n 30–50 0 1 2 3 50–65 8 3 7 18 65+ 0 2 2 4 Age Mean (SD) 57.4 (9.5) Time since diagnosis (years) Less than 1 1 0 1 2 1–5 5 1 9 15 5+ 2 5 1 8 Time since diagnosis (years) Mean (SD) 5.3 (4.2) Table 6: Characteristics of participants – health professionals. Region Specialty Sex Participation Canary Islands Cardiologist Male Online Canary Islands General Practitioner Male Online Catalonia Cardiologist Female Online Catalonia General Practitioner Female Online Madrid General Practitioner Male Online Madrid General Practitioner Male Online Madrid Cardiologist Female Online Madrid General Practitioner Male Online Madrid Nurse Practitioner Male Workshop Madrid Nurse Practitioner Female Workshop Exploratory phase symptoms of infarction was common. As the most widely Points of contact, what happened, treatments, feelings, known symptom of infarction was chest pain, people with and empowerment needs for the three stages of the tra- IHD who did not experience that symptom tended to not jectory of care of people with IHD (diagnosis, post-diagno- recognize that they were having an infarct. Some thought sis and long-term care) were visualised on the co-designed they were suffering from anxiety or stomach bloating. Patient Journey Map (Figure 2). The experiences of peo- ple with IHD and their empowerment needs were diverse Post-diagnosis stage depending on their gender, socio-economic and family Those participants who had a second infarction tended to situations, and on the impact the IHD had on their health, immediately recognize the symptoms, as they did not vary social and work life. from their first infarction. Infarction was followed by fear, In the remainder of this section we describe the diversity bewilderment and disbelief that it happened to them. of experience from people with IHD and identify empow- People with IHD described the post-diagnosis stage as erment needs on which the Patient Journey Map is based. the months after the diagnosis where there is still some uncertainty about the adaptation to lifestyle changes and Experiences of people with IHD the learning of skills to best manage the cardiovascular dis- Diagnosis stage ease. It was also a period in which participants stayed alert The vast majority of people that participated were diag- in regards with the disease and were motivated to change. nosed with IHD after having suffered a myocardial infarc- Not all participants had access to rehabilitation services tion, while two were diagnosed during routine controls in this stage. This access depended on whether rehabilita- or follow-up of comorbid conditions. Not recognizing the tion was available locally or the service had waiting lists. Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for Art. 9, page 7 of 13 the Empowerment of People with Ischemic Heart Disease Figure 2: Patient Journey Map. Participants, even those who had not received rehabilita- tion in order to incorporate healthy living recommenda- tion, considered it an essential milestone in the empower- tions, understand and manage the fear and uncertainty ment process. associated with the infarction, and assume the disease with a positive attitude. In relation to social support, the Long-term follow-up stage fundamental care network identified by the participants In the long-term follow-up stage, participants reported was their family who accompanied them throughout the a decrease in alertness and motivation for change. This trajectory of care. Caring was not always easy, and partici- decrease usually occurred between one and two years pants considered that family members and other carers after the infarction. After this one- or two-year period, needed support to recognize and to be able to help during which varied for each participant, it was more difficult to the recovery process, including its early stages. maintain heart-healthy habits. Post-Diagnosis stage Empowerment needs In the Post-Diagnosis stage, the information and knowl- Empowerment needs varied in the diagnosis, post-diag- edge needs shifted to personalized knowledge about nosis, and long-term stages as can be seen in the Patient the individual impact of the disease, knowledge about Journey Map (Figure 2). We found needs can be classified healthy activities adapted to each person’s circumstances, in three categories: information and knowledge needs, and about the lifestyle changes necessary for leading a needs related to psychological care, needs related to social heart-healthy life (regular exercise, healthy diet, and no support in care. smoking). The main barriers to empowerment as described by Regarding psychological needs, participants with IHD people with IHD were consistent through all stages of the explained that it was necessary to become aware of the patient’s trajectory and were related to precarious socioec- sources of stress and learn how to reduce them, as well as onomic or work conditions, lack of family support/accom- to improve their self-management of emotions. Lifestyle paniment, low digital health literacy, or lack of access to changes required social support and implied negotiations adequate professional care or treatment (for example, with family and other carers. due to coordination issues between physicians). Job and financial vulnerability made it difficult to access care, for Long-term follow-up example rehabilitation, which requires a large number of In the long-term follow-up stage, participants, both peo- hours of attendance may require to take time off work. ple with IHD and health professionals, suggested that Gender inequality meant greater barriers to self-care and there was a need to use motivational techniques in order social support for women with IHD, as many of them had to encourage people with IHD to adhere to the recom- assigned caretaking roles in their families (e.g. with other mendations regarding medication, diet, smoking cessa- dependents as child or elders). tion, and physical exercise after the first months or years. The maintenance of healthy habits also required negotia- Diagnosis stage tions with family and other carers. The identified needs included basic and general informa- For some participants, it was also empowering to build tion of the IHD, possible symptoms and activities that can clinical support networks, that is, networks consisting of be carried out after a heart attack. Participants stated that one or more health professionals to rely on in the long- the empowerment process required them to overcome term follow-up. For other participants, patient organiza- the initial impact of receiving the diagnosis/of the infarc- tions were an important network of social support and Art. 9, page 8 of 13 Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for the Empowerment of People with Ischemic Heart Disease contributed to the maintenance of long-term heart- revised and accepted by all participants in the online par- healthy habits. ticipation process. Development phase The e-mpodera2 vCoP’s content framework for people with IHD The development phase assessed the acceptability and The e-mpodera2 vCoP’s content framework for people with usability of the e-mpodera2 platform from the perspective IHD added, to the three aforementioned pillars, a fourth of people with IHD. Then, this phase focused on the pri- one based on contributions from the listening labs related oritization of the empowerment needs and the formula- to skills for the improvement of social and family support tion of both the e-mpodera2 content framework for people in care needs and practical issues. with IHD and contents for the vCoP. The e-mpodera2 vCoP’s content framework, including examples of the content developed for the vCoP during Acceptability and usability of the e-mpodera2 platform the face-to-face workshops, is presented in Table 7. Some Most of the people with IHD found the e-mpodera2 plat- of these resources were transformed into online activities form acceptable and usable, with the exception of some and were piloted on the platform. Supported by a modera- older participants with self-reported low digital literacy. tor, two resources (interactive activity or challenge) were Participants suggested some changes to improve the proposed online each week. Additionally, participants platform, including adding a Spanish spell checker and could open discussions at will and add content on their emoticons in the comment section, improving tools for own. This was the case in four occasions, in which par- embedding videos, and a friendlier interface for voting ticipants added ideas and commented on news related to and commenting. All these changes were implemented in IHD. These contents were added to the final material pro- order to improve usability. posed for the vCoP. Empowerment needs prioritization Discussion The priority of empowerment needs varied by region, The co-design process allowed people with IHD to share based on the main barriers experienced by the peo- their experiences and empowerment needs, as visualized ple with IHD in each context. In the Canary Islands, in the Patient Journey Map. We adapted the mapping tech- psychological needs were identified as the most relevant, nique to elicit empowerment needs from the perspective while in Catalonia and Madrid the needs from all three of people with IHD. Patient Journey Maps are increasingly categories were seen as equally relevant. We describe used in person-centred health service design, particularly below the empowered needs that were prioritized in at in association with quality improvement processes but the least two groups. technique is scarcely used in health research [24, 25]. We In the diagnosis stage, people with IHD considered that have not found any previous study using a Patient Journey it was a priority to begin to accept the diagnosis, including Map to co-design a vCoP, with the exception of Coy et al. being able to recognize and overcome fear, uncertainty, (2019) [26] who used a similar design. More specifically, and/or denial. They also pointed out that it is necessary their work used experience-based co-design to visually to receive basic information about the disease (risk fac- represent the experience of children and their families, tors, causes, etc.), information on how to make the transi- and suggested areas for improvement that helped the tion from the hospital to daily life, and information on design of an educational tool. the existence and benefits of rehabilitation. Finally, they Our co-design process also enabled the development identified family support as essential to help recovery and of multiple contents adapted to people with IHD needs help take care of themselves. and priorities that will help to develop the e-mpodera2 In the post-diagnosis stage, the prioritized aspects were vCoPs. The WHO Framework on Integrated People-Centred to improve the self-management of emotions to face the Health Services encourages co-production of health ser- situation, regain confidence, and increase self-control. In vices that can meet people’s needs in the long term and addition, people with IHD pointed out the importance of are coordinated both within and beyond the health care receiving information on individualised risk factors and system [29]. Co-design processes may serve to develop personal health information associated with the infarct health services that promote both person-centred and (e.g. ejection fraction, number of vessels with lesions, integrated care [29]. We believe this Patient Journey Map residual ischemia, etc.), as well as recommendations on and the its inclusion in co-design processes may be trans- nutrition and recipes to maintain a heart-healthy diet. The ferable and can be adapted to design person-centred and main barriers perceived after diagnosis included work- integrated health services for IHD such as rehabilitation, related responsibilities, taking care of dependents, and lay educational materials, and other self-management other socioeconomic difficulties. interventions. In the long-term follow-up stage, the main challenge was to maintain lifestyle changes over time and to con- Strengths and limitations nect with support groups and patient organizations with Patient Journey Maps help to easily visualise, share, and common objectives. co-produce knowledge [24]. The IHD Patient Journey Map Prioritized empowerment needs were used by partici- allowed us to show the changing empowerment needs in pants to elaborate example of contents for the CoP in the the diagnosis, post-diagnosis, and long-term care stages. development workshop. The final description of empow- This processual perspective helped to elicit empowerment erment needs included in the Patient Journey Map was needs beyond the urgency of a myocardial infarction. Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for Art. 9, page 9 of 13 the Empowerment of People with Ischemic Heart Disease Table 7: e-mpodera2 VCoP content framework for people with IHD with content examples. Empowerment dimensions Learning objectives Examples of contents: co-created interactive activities and challenges Health literacy Disease awareness To improve awareness of ischemic Do you know how your heart works? disease, prevention and healthy What is ischemic heart disease? lifestyle What does it consist of? Types. Risk factors. Glossary with key medical terms and their acronyms. Communication skills To improve communication skills How to improve communication skills with the health professional and with your family? Emotional management To improve skills regarding Tips for mental health ­emotional management How can I express my emotions to my family and ask for their support? Identify fear: make a list of the most fearful problems and seek support to overcome those fears Knowledge about medicines To improve awareness about What to know about medicines interaction? management medicines management, as well Mechanisms to avoid forgetting to take medication as knowing the food-medicine interactions; drug interactions among others Knowledge about healthy To know resources for habit How to start changing habits? habits and lifestyle (food, change Food labelling: Fats, sugar, salt. exercise…) – habits change Leave behind myths: Healthy diet: there is still confusion about the use of salt and coffee. Self-management Healthy food To get resources and recipes for How to read labels. healthy food Recipes from famous people with ischemic disease Healthy recipes competency Exercise and physical activity To get advice and routines for What if I want to dedicate myself to my usual physical – sport applying physical exercise exercise, despite my illness? Stop smoking and drinking To share resources for smoke and 12 Tips to quit smoking alcohol alcohol cessation Self-tracking (weight, To know how to self-track Basic information on physical self-control resources. ­emotions, sleeping, walking…) ­measures Essential questions: Control and monitoring of heart rate. Resources for self-control: pulsations, blood pressure monitor, pedometer. Symptoms recognition To improve awareness about To prepare cardiologist consultation symptoms recognition Emotional care To improve emotional care Psychological care: Tools to promote relaxation: videos/ recordings of Jacobson’s relaxation, mindfulness, yoga. FAQs (Asking professionals) To offer a consulting resource for Answers for uncomfortable or frequent questions asking professionals doubts, and other uncomfortable questions Shared Decision Making Living will To decide how to manage will- How to treat awkward issues with carers and family ing last decisions in different How to speak about living will with family and carers scenarios Preferences about treatment To improve awareness about What to know about recovery options and specific daily decisions treatment possibilities, recovery available and other daily decisions. Recovery decisions preferences To improve awareness about How to prepare cardiologist’s visit: Preparing a list of recovery options questions (Contd.) Art. 9, page 10 of 13 Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for the Empowerment of People with Ischemic Heart Disease Empowerment dimensions Learning objectives Examples of contents: co-created interactive activities and challenges Social and family support and practical issues Return to normal life To manage skills to get progres- Family communication: facilitate two-way communication (social and family a­ ctivities, sively to normal life, getting sup- to improve how I communicate with my family and how and relationships, back port from the social environment, they communicate with me. at work) family and work. To improve family awareness to support relatives with ischemic disease Economic and practical issues To manage difficulties at work How to manage problems at work and practical issues and/or economic problems after Share resources, patients’ organizations, expert advice and disease other tools IHD = ischemic heart disease. The co-design process established a partnership strong collaboration between the research team, people between people with IHD, health care professionals, and with IHD, and health professionals. The co-design pro- researchers that helped develop the e-mpodera2 vCoPs’ cess resulted in a Patient Journey Map that helps to eas- content framework. Participants produced an enormous ily visualise the empowerment needs of people with IHD quantity of ideas for training resources and activities, and in diagnosis, post-diagnosis, and long-term care stages. most of them will be used in the randomized controlled Additionally, the Patient Journey Map could potentially be trial to test the effectiveness of the vCoP for improving adapted in the development of person-centred interven- patient’s empowerment. vCoPs are highly participative tions. Co-design also allowed us to develop training mate- and dynamic, and the final contents will depend on the rials adapted to the needs and priorities of people with interest and needs of its actual participants. IHD. The process generated many more content ideas Lack of economic and human resources, barriers for than expected, ultimately generating a rich and extensive participants’ engagement and retention, and other prob- framework for the e-mpodera2 vCoP. lems can hinder co-design processes [16]. Ideally, the co- design processes should include a maximum variation Additional Files sample to incorporate a diverse range of experiences. The additional files for this article can be found as follows: Perspectives of women, elderly, minorities, migrants, and socially excluded groups may add specificities that will • Additional file 1. GRIPP2 short form checklist. DOI: not be collected if they are not included in a participa- https://doi.org/10.5334/ijic.5514.s1 tory process [17]. Nevertheless, maximum variation of • Additional file 2. Informed consent. DOI: https:// the sample was not achieved in our co-creation process. doi.org/10.5334/ijic.5514.s2 A limited number of women with IHD (n = 8/25) partici- pated. Their experiences and needs are specific [25, 27] Acknowledgements and were underrepresented in the co-design process. The authors would like to thank the participants in the co- Furthermore, all participants, except one, had experi- design process for sharing their experiences and knowl- enced a myocardial infarction so other experiences were edge with us, and for the effort and time dedicated to the not included. We were not able to recruit minorities, project. Special appreciation is given to the patient asso- migrants, and socially excluded groups due to lack of ciations (Asociación de Cardiópatas de Madrid Sur and time and resources. Older and less digitally literate par- Cardioalianza) that helped with the recruitment of people ticipants found the e-mpodera2 platform difficult to use with ischemic heart disease. and some participants did not conclude the process. As Authors are thankful as well to David Dinh and Truci noted by Greenhalgh et al. (2017) [28] older, sicker, and Nguyen for the design of the Patient Journey Map less digitally literate people are less likely to benefit from infographic. teleservices such as a vCoP. Engagement of people with IHD in the conceptualization, design and recruitment of Reviewers this study might have helped to recruit more and more Hannah Johnson, Integrated Care Lead, Children’s diverse participants. Health Queensland Hospital and Health Service, Another limitation of this study was the lack of training Queensland, Australia. for the research group in participation facilitation, which Sue Sheridan, MIM, MBA, DHL, Director of Patient was easily solved by capacity building within the group. Engagement Emeritus, Society to Improve Diagnosis in Medicine (SIDM). Conclusion The co-design process conducted in this study was new Competing Interests and exciting for the e-mpodera group. It resulted in a The authors have no competing interests to declare. Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for Art. 9, page 11 of 13 the Empowerment of People with Ischemic Heart Disease Author Information on cardiovascular risk factor control in coronary The e-mpodera research group is formed by the authors patients across 27 countries: Results from the Euro- and Sofía Garrido-Elustondo, (Gerencia Asistencial pean Society of Cardiology ESC-EORP EUROASPIRE Atención Primaria, Servicio Madrileño de Salud, Red V registry. Eur J Prev Cardiol [Internet]. 2019 May 10; de Investigación en Servicios de Salud en Enferme- 26(8): 824–35. Available from: http://journals.sage- dades Crónicas (REDISSEC), Juan Carlos Obaya-Rebollar pub.com/doi/10.1177/2047487318825350. ­(Centro de Salud Chopera, Gerencia Asistencial de Aten- 6. Powers TL, Bendall D. Improving Health Outcomes ción Primaria), Santiago Díaz-Sánchez (Centro de Salud Through Patient Empowerment. J Hosp Mark Pub- ­Pintores, Gerencia Asistencial de Atención Primaria), Luis lic Relations [Internet]. 2004 Nov 8; 15(1): 45–59. Morales-Cobos (Centro de Salud Las Américas, ­Gerencia Available from: http://www.tandfonline.com/doi/ Asistencial de Atención Primaria), Ana Rodríguez-­ full/10.1300/J375v15n01_05. DOI: https://doi. Almodovar (UGC Cardiología, Hospital Universitario org/10.1300/J375v15n01_05 Reina Sofía), Juana Mateos-Rodilla (Escuela Madrileña de 7. World Health Organization (WHO). Priority Salud, Dirección General de Humanización y Atención al areas [Internet]. Health 2020: the European policy Paciente), Marta Ruiz López (CS Vicente Muzas, Gerencia for health and well-being. 2020 [cited 2020 Mar Asistencial de Atención Primaria, Servicio Madrileño de 13]. Available from: http://www.euro.who.int/ Salud), Yolanda Canellas (CS Monovar, Gerencia Asisten- en/health-topics/health-policy/health-2020-the- cial de Atención Primaria, Servicio Madrileño de Salud), european-policy-for-health-and-well-being/ José Ignacio Vicente-Díaz (CS Monovar, Gerencia Asisten- about-health-2020/priority-areas. cial de Atención Primaria, Servicio Madrileño de Salud), 8. Castro EM, Van Regenmortel T, Vanhae- José Carlos del Castillo (Área de prevención y medicina cht K, Sermeus W, Van Hecke A. Patient cardiovascular. Hospital San Juan de Dios), Nuria Vallejo- empowerment, patient participation and patient- Camazón (Hospital Germans Trias i Pujol) Marta Ballester centeredness in hospital care: A concept analysis (Avedis Donabedian Research Institute (FAD), Barcelona, based on a literature review. Patient Educ Couns Universitat Autónoma de Barcelona, Red de Investigación [Internet]. 2016 Dec; 99(12): 1923–39. Available en Servicios de Salud en Enfermedades Crónicas). from: https://linkinghub.elsevier.com/retrieve/ pii/S0738399116303214. DOI: https://doi. References org/10.1016/j.pec.2016.07.026 1. Hartley A, Marshall DC, Salciccioli JD, Sikkel MB, 9. Kärner Köhler A, Tingström P, Jaarsma T, Maruthappu M, Shalhoub J. Trends in Mortality Nilsson S. Patient empowerment and general self- From Ischemic Heart Disease and Cerebrovascu- efficacy in patients with coronary heart disease: lar Disease in Europe. Circulation [Internet]. 2016 a cross-sectional study. BMC Fam Pract [Internet]. May 17; 133(20): 1916–26. Available from: https:// 2018 Dec 30; 19(1): 76. Available from: https://bmc- www.ahajournals.org/doi/10.1161/CIRCULATIO- fampract.biomedcentral.com/articles/10.1186/ NAHA.115.018931. DOI: https://doi.org/10.1161/ s12875-018-0749-y. DOI: https://doi.org/10.1186/ CIRCULATIONAHA.115.018931 s12875-018-0749-y 2. Instituto Nacional de Estadística. INE base. 10. Sol BGM, van der Graaf Y, van Petersen R, [Internet]. [cited 2018 Feb 27]. Available from: Visseren FLJ. The Effect of Self-Efficacy on http://www.ine.es/inebmenu/indice.htm#12. Cardiovascular Lifestyle. Eur J Cardiovasc Nurs 3. Jernberg T, Hasvold P, Henriksson M, Hjelm H, [Internet]. 2011 Sep; 10(3): 180–6. Available from: Thuresson M, Janzon M. Cardiovascular risk in http://journals.sagepub.com/doi/10.1016/j.ejc- post-myocardial infarction patients: nationwide nurse.2010.06.005. DOI: https://doi.org/10.1016/j. real world data demonstrate the importance of a ejcnurse.2010.06.005 long-term perspective. Eur Heart J [Internet]. 2015 11. Rayment J, Sidhu M, Wright P, Brown P, May 14; 36(19): 1163–70. Available from: https:// Greenfield S, Jeffreys S, et al. Collaboration academic.oup.com/eurheartj/article-lookup/ for Impact: Co-creating a Workforce Develop- doi/10.1093/eurheartj/ehu505. DOI: https://doi. ment Toolkit Using an Arts-based Approach. Int J org/10.1093/eurheartj/ehu505 Integr Care [Internet]. 2020 Jun 9; 20(2): 11. Avail- 4. Perk J, De Backer G, Gohlke H, Graham I, Reiner able from: https://www.ijic.org/article/10.5334/ Z, Verschuren M, et al. European Guidelines on ijic.5377/. DOI: https://doi.org/10.5334/ijic. cardiovascular disease prevention in clinical prac- 5377 tice (version 2012): The Fifth Joint Task Force of 12. Goodwin N. Towards People-Centred Integrated the European Society of Cardiology and Other Care: From Passive Recognition to Active Co- Societies on Cardiovascular Disease Prevention production? Int J Integr Care [Internet]. 2016 Jun in Clinical Practice (constituted by re). Eur Heart 24; 16(2). Available from: http://www.ijic.org/ J [Internet]. 2012 Jul 1; 33(13): 1635–701. Avail- articles/10.5334/ijic.2492/. DOI: https://doi. able from: https://academic.oup.com/eurheartj/ org/10.5334/ijic.2492 article-lookup/doi/10.1093/eurheartj/ehs092. 13. Mussoi E, Flores M, Behar P. Comunidades vir- 5. Kotseva K, De Backer G, De Bacquer D, Rydén tuais – un novo espaço de aprendizagem [Internet]. L, Hoes A, Grobbee D, et al. Lifestyle and impact IX Ciclo Palestras sobre Novas Tecnol na Educ. 2007 Art. 9, page 12 of 13 Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for the Empowerment of People with Ischemic Heart Disease [cited 2020 Mar 13]. Available from: http://www. a virtual community of practice to primary care cinted.ufrgs.br/ciclo9/artigos/8aEunice.pdf. professionals regarding patient empowerment: a 14. Li LC, Grimshaw JM, Nielsen C, Judd M, Coyte PC, qualitative pilot study. BMC Health Serv Res [Inter- Graham ID. Evolution of Wenger’s concept of com- net]. 2019 Dec 20; 19(1): 403. Available from: munity of practice. Implement Sci. 2009 Dec 1; 4(1): https://bmchealthservres.biomedcentral.com/arti- 11. DOI: https://doi.org/10.1186/1748-5908-4-11 cles/10.1186/s12913-019-4185-z. DOI: https://doi. 15. Catela H. Comunidades de aprendizagem: em org/10.1186/s12913-019-4185-z torno de um conceito [Learning comunities: around 22. Tunney AM, Ryan A. Listening to carers’ views a concept]. Rev Educ. 2011; XVIII(2): 31–45. [In on stroke services. Nurs Older People [Inter- Portuguese]. net]. 2014 Jan 31; 26(1): 28–31. Available from: 16. Green T, Bonner A, Teleni L, Bradford N, Purtell http://rcnpublishing.com/doi/abs/10.7748/ L, Douglas C, et al. Use and reporting of experi- nop2014.02.26.1.28.e500. DOI: https://doi. ence-based codesign studies in the healthcare set- org/10.7748/nop2014.02.26.1.28.e500 ting: a systematic review. BMJ Qual Saf [Internet]. 23. EMPATHiE Consortium. EMPATHiE, empowering 2020 Jan; 29(1): 64–76. Available from: http:// patients in the management of chronic diseases. qualitysafety.bmj.com/lookup/doi/10.1136/bmjqs- Final Summary Report; 2014. 2019-009570. DOI: https://doi.org/10.1136/ 24. McCarthy S, O’Raghallaigh P, Woodworth S, Lim bmjqs-2019-009570 YL, Kenny LC, Adam F. An integrated patient jour- 17. Halvorsrud K, Kucharska J, Adlington K, Rüdell ney mapping tool for embedding quality in health- K, Brown Hajdukova E, Nazroo J, et al. Identify- care service reform. J Decis Syst [Internet]. 2016 Jun ing evidence of effectiveness in the co-creation 10; 25(sup1): 354–68. DOI: https://doi.org/10.1080 of research: a systematic review and meta-anal- /12460125.2016.1187394 ysis of the international healthcare literature. J 25. Sadler E, Potterton V, Anderson R, Khadjesari Z, Public Health (Bangkok) [Internet]. 2019 Oct 11; Sheehan K, Butt F, et al. Service user, carer and pro- Available from: https://academic.oup.com/jpub- vider perspectives on integrated care for older peo- health/advance-article/doi/10.1093/pubmed/ ple with frailty, and factors perceived to facilitate fdz126/5585850. DOI: https://doi.org/10.1093/ and hinder implementation: A systematic review pubmed/fdz126 and narrative synthesis. Vaismoradi M (ed.), PLoS 18. Staniszewska S, Brett J, Simera I, Seers K, One [Internet]. 2019 May 13; 14(5): e0216488. DOI: Mockford C, Goodlad S, et al. GRIPP2 report- https://doi.org/10.1371/journal.pone.0216488 ing checklists: tools to improve reporting of 26. Coy K, Brock P, Pomeroy S, Cadogan J, Beckett K. patient and public involvement in research. BMJ A Road Less Travelled: using Experience Based Co- [Internet]. 2017 Aug 2; j3453. Available from: Design to map children’s and families’ emotional http://www.bmj.com/lookup/doi/10.1136/bmj. journey following burn injury and identify service j3453. DOI: https://doi.org/10.1136/bmj.j3453 improvements. Burns [Internet]. 2019 Dec; 45(8): 19. Bate P, Robert G. Experience-based design: from 1848–55. Available from: https://linkinghub.else- redesigning the system around the patient to co- vier.com/retrieve/pii/S0305417918306107. DOI: designing services with the patient. Qual Saf Heal https://doi.org/10.1016/j.burns.2019.07.024 Care [Internet]. 2006 Oct 1; 15(5): 307–10. Avail- 27. Madsen R, Birkelund R. Women’s experiences able from: http://qualitysafety.bmj.com/lookup/ during myocardial infarction: systematic review doi/10.1136/qshc.2005.016527. DOI: https://doi. and meta-ethnography. J Clin Nurs [Internet]. 2016 org/10.1136/qshc.2005.016527 Mar; 25(5–6): 599–609. Available from: http://doi. 20. González-González AI, Orrego C, Perestelo-Perez wiley.com/10.1111/jocn.13096. DOI: https://doi. L, Bermejo-Caja CJ, Mora N, Koatz D, et al. org/10.1111/jocn.13096 Effectiveness of a virtual intervention for primary 28. Greenhalgh T, A’Court C, Shaw S. Understand- healthcare professionals aimed at improving atti- ing heart failure; explaining telehealth – a herme- tudes towards the empowerment of patients with neutic systematic review. BMC Cardiovasc Disord chronic diseases: Study protocol for a cluster ran- [Internet]. 2017 Dec 14; 17(1): 156. Available from: domized controlled trial (e-MPODERA project). http://bmccardiovascdisord.biomedcentral.com/ Trials. 2017; 18(1). DOI: https://doi.org/10.1186/ articles/10.1186/s12872-017-0594-2. DOI: https:// s13063-017-2232-9 doi.org/10.1186/s12872-017-0594-2 21. Bermejo-Caja CJ, Koatz D, Orrego C, 29. World Health Organization (WHO). Framework Perestelo-Pérez L, González-González AI, on Integrated People-Centred Health Services. Ballester M, et al. Acceptability and feasibility of Geneva; 2016. Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for Art. 9, page 13 of 13 the Empowerment of People with Ischemic Heart Disease How to cite this article: Toledo-Chávarri A, Ramos-García V, Koatz D, Torres-Castaño A, Perestelo-Pérez L, Ramírez-Puerta AB, Tello-Bernabé M-E, García-García J-M, García-García J, Pacheco-Huergo V, Orrego C, González-González AI, e-mpodera group. Co-Design Process of a Virtual Community of Practice for the Empowerment of People with Ischemic Heart Disease. International Journal of Integrated Care, 2020; 20(4): 9, 1–13. DOI: https://doi.org/10.5334/ijic.5514 Submitted: 31 March 2020 Accepted: 29 July 2020 Published: 09 November 2020 Copyright: © 2020 The Author(s). This is an open-access article distributed under the terms of the Creative Commons Attribution 4.0 International License (CC-BY 4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. See http://creativecommons.org/licenses/by/4.0/. International Journal of Integrated Care is a peer-reviewed open access journal published by Ubiquity Press. OPEN ACCESS