Co-Design Process of a Virtual Community of Practice for the Empowerment of People with Ischemic Heart Disease

Abstract

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.

Full text

Introduction
Ischemic heart disease (IHD) is the main cause of prema-
ture death among the population in Europe [1]. In Spain,
approximately 30,000 people suffer a myocardial infarc-
tion every year [2], and among those who survive, around
20% go through a secondary cardiovascular event in the
first year [3]. Regular exercise, a healthy diet, smoking
cessation, and the use of cardiovascular preventive drugs
are effective preventive actions that reduce mortality
and re-infarction rates [4]. However, some people with
IHD struggle when trying to reduce their cardiovascular
risk factors [5]. Secondary prevention of IHD for reduc-
ing the impact of the disease after its onset is complex
and challenging, thereby warranting the need to gain
deeper knowledge on how to facilitate long lasting life-
style changes.
Patient empowerment has been recognized as a key fac-
tor in improving health outcomes, increasing communica-
tion between patients and professionals, achieving better
adherence to treatment, and ensuring an efficient use of
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) oer 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 modied 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-ve people with IHD and ten health professionals participated. Experiences and needs
for empowerment in IHD were identied 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
* Fundación Canaria Instituto de Investigación Sanitaria de
Canarias (FIISC), Tenerife, ES
† Red de Investigación en Servicios de Salud en Enfermedades
Crónicas (REDISSEC), ES
‡ Avedis Donabedian Research Institute (FAD), Barcelona, ES
§ Universitat Autónoma de Barcelona, Barcelona, ES
‖ ServiciodeEvaluaciónyPlanicacióndelServicioCanariode
la Salud, Tenerife, ES
¶ Unidad de Apoyo Técnico, Gerencia Asistencial de Atención
Primaria, Servicio Madrileño de Salud, Madrid, ES
** Gerencia Asistencial de Atención Primaria, Servicio Madrileño
de Salud, Madrid, ES
†† Unidad de Calidad y Seguridad del Paciente. Hospital
Universitario Nuestra Señora de Candelaria, Tenerife,
Canarias, ES
‡‡ Centro de Atención Primaria Turó, Instituto Catalán de la
Salud, Barcelona, ES
§§ Institute of General Practice, Goethe University, Frankfurt, DE
Corresponding autor: Lilisbeth Perestelo-Pérez
(lilisbeth.peresteloperez@sescs.es)
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

Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for
the Empowerment of People with Ischemic Heart Disease
Art. 9,page 2of13
primary health care resources [6]. The Health 2020 policy
framework put forth by the World Health Organization
(WHO) proposes strategies and action plans focused on
investment in health through the empowerment of citi-
zens [7]. In fact, a recent analysis on empowerment stated
that “it is a process that enables patients to exert more inu-
ence over their individual health by increasing their capaci-
ties to gain more control over issues they themselves dene
as important” [8]. In people with IHD, autonomy and self-
efficacy are considered relevant factors when planning
their cardiac rehabilitation plan [9]. It has been shown
that when people with IHD are autonomous and self-
effective in managing their disease, they act to improve
their lifestyle by adopting more preventive behaviours,
such as making appropriate food choices and getting reg-
ular physical exercise [10].
Empowerment is also one of the principles of integrated
care [11]. Coordination of care and services may improve
by engaging people to actively participate in their care
process and in the coproduction of integrated care inter-
ventions [12].
A virtual community of practice (vCoP) can be defined
as a group of people with a common interest or problem
who interact and share knowledge, learning together using
an online platform that is developed on, and maintained
using the Internet. vCoPs offer the possibility to identify
and share resources and apply the tools and knowledge nec-
essary for empowerment [13]. Through collaborative learn-
ing the experiences and knowledge of members support
the community, strengthen relationships, and help raise
ideas and innovation capacity in the area of interest [14].
The construction of knowledge is a social and interactive
process. In this sense, learning communities are composed
of three essential aspects: i) the existence of a space, physi-
cal or online, to share and build knowledge and capacities;
ii) the mutual support among its members characterized by
collaboration, interaction, and a feeling of belonging that
facilitates the sharing of knowledge and experiences; and
iii) the definition of learning as a process [15].
Co-design of interventions or health services can seek
to effectively improve care [16]. A systematic review and
meta-analysis of co-design research experiences [17]
showed that co-designed interventions can improve
health related outcomes both at individual and commu-
nity levels, including physical health, healthy behaviours,
self-efficacy, health service access and receipt, as well as
strengthen community relations. The co-design elements
that had the greatest impact on the effectiveness included,
accommodating the interventions to the needs and priori-
ties of their participants, and incorporating skills [17].
This paper describes the co-design of a vCoP for the
empowerment of people with IHD, in collaboration with
health professionals from primary and specialized care
and a team of researchers. This work was conducted as
part of the e-mpodera2 project, a randomized controlled
trial that aims to evaluate the effectiveness and cost-effec-
tiveness of the co-designed vCoP, as described herein, to
improve patient activation and other measures related
with patient empowerment in people with IHD (Trial reg-
istration: ClinicalTrials.gov, (NCT02757781), Registered
on 25 April 2016).
Research Methods
This study has been funded by the Carlos III Health Insti-
tute (Instituto de Salud Carlos III) through the project
“PI18/01404, PI18/01397, PI18/01333”, and co-funded
by the European Regional Development Fund (ERDF)
“A way of shaping Europe”. It was approved by Clinical
Research Ethics Committees of Gregorio Marañón
University Hospital in Madrid (Acta 08/2019), Nuestra
Señora de Candelaria University Hospital in Santa Cruz
de Tenerife (CHUNSC_2019_05) and IDIAP Jordi Gol in
Barcelona (19/053-P).
The present manuscript follows the reporting short
checklist for PPI in research [18] (Additional file 1).
Additional file 1. https://doi.org/10.5334/ijic.5514.s1
Design
We used a modified experience-based design approach
[19] to co-design the e-mpodera2 vCoP intervention. The
co-design process consisted of two sequential phases: i)
exploratory phase, and ii) development phase. Specific
objectives, data collection techniques, participants, and
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
the Empowerment of People with Ischemic Heart Disease
Art. 9,page 3of13
Specic Objectives
The co-design process objective was to develop a structure
and content examples for the randomized control trial
vCoP. The specific objectives for each phase were:
1) The exploratory phase aimed: i) to identify different
diagnosis and treatment paths for IHD; ii) to explore
short, medium and long-term treatments and
points of contact for people with IHD represented
through a Patient Journey Map; iii) to understand
the experiences and empowerment needs of people
with IHD; and iv) to assess the acceptability and
usability of the e-mpodera2 online platform.
2) The development phase sought: i) to prioritize
addressable empowerment needs; ii) to propose
examples of contents for the vCoP; iii) to create the
e-mpodera2 vCoPs’ content framework for people
with IHD; and iv) to pilot some of the proposed
contents; and v) to continue the assessment of
the acceptability and usability of the e-mpodera2
online platform.
Setting
The study took place in the Spanish National Health Sys-
tem in three different regions in Spain: Canary Islands,
Catalonia and Madrid.
Participants
Inclusion criteria (people with IHD)
Age ≥ 18 years; diagnosis of IHD in the electronic
medical record; be willing to be a member of the group
and attend meetings for 6 months (at least one of the
two face-to-face meetings and participate in the online
co-design group); be willing to use Facebook, WhatsApp,
Telegram or email within the framework of the co-design
process; have signed the informed consent and commit to
participate in the study (Additional file 2).
Additional file 2. https://doi.org/10.5334/ijic.5514.s2
Exclusion criteria (people with IHD)
Low probability of cooperation in the study, situation of
displaced or being a temporary resident, institutionalized,
with a terminal illness, or a physical or mental disability
that limit their ability to comply with study requirements.
Inclusion criteria (health professionals)
General practitioners, practice nurses or cardiologists who
were members of the research team or had expertise in
cardiovascular diseases and/or patient empowerment.
They ought to participate as part of the focus group or the
development workshop.
Exclusion criteria (health professionals)
Not willing to participate in the study.
Sample and recruitment
A purposive sample of people with IHD sought to include
maximum variation regarding age, gender and time from
onset. Recruitment of people with IHD in each region was
conducted through IHD patient organizations and gen-
eral practitioners, practice nurses, and cardiologists who
showed interest in the study and who had participated in
the previous research project e-mpodera1 [20, 21], which
developed a vCoP for primary care health professionals
(general practitioners and practice nurses) to engage in
patient empowerment.
A convenience sample of health professionals was
recruited from e-mpodera1 participants and members of
the research team who were not engaged in the design
or facilitation of the co-design process. They were invited
to participate in a focus group. Health professionals were
not actively recruited for the development phase work-
shop, but participation was open for those wanting to
contribute in the development of the vCoP.
Participation was voluntary. Participants were free to
withdraw from the study at any time without affecting
present or future medical treatment.
Data collection
Facilitation for both phases was designed by a researcher
specialized in PPI methods and conducted by a team of
seven researchers with diverse experience in participation
and qualitative research.
Exploratory phase
This phase comprised an online focus group with health
professionals, three face-to-face listening labs with people
with IHD in each of the included Spanish Regions (Canary
Islands, Catalonia, Madrid), and online participation
through the e-mpodera2 platform. Face-to-face labs were
carried out in a paediatric hospital facility in the Canary
Islands, in a research centre in Cataluña and in a primary
care management facility in Madrid.
The online focus group with health professionals was an
open discussion lead by a moderator and with an observer
taking notes of mentioned topics. Listening labs were
workshops based on deep listening qualitative techniques
[22] where participants collaboratively drafted a Patient
Journey Map built with cardboards.
We developed two semi-structured guides, one for the
online focus group with health professionals (Table 1),
and the other one for the listening labs with people with
IHD (Table 2). Listening labs were followed by online
participation in the e-mpodera2 platform where the rand-
omized controlled trial vCoP will be held, a gamified web
2.0 platform, with interactive learning content [20, 21].
The research team proposed two activities a week from 3rd
May to 7th June 2019 and a moderator motivated people
to comment, engage and participate. The description of
the online participation activities can be found in Table 3.
Development phase
We conducted three face-to-face development work-
shops with people with IHD, one in each of the Spanish
Regions, followed by online participation in the
e-mpodera2 platform. We used a semi-structured guide
for the workshops (Table 4). In Madrid, two health pro-
fessionals participated in the content development;
health professionals did not participate in the other two
regions. Online participation consisted on the piloting
of two co-designed contents each week between 10th
June and 12th July 2019.

Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for
the Empowerment of People with Ischemic Heart Disease
Art. 9,page 4of13
Analyses
The Patient Journey Map was progressively co-developed
with people with IHD and health professionals. A uni-
fied draft was created with information from the focus
group and the listening labs of the Exploratory phase.
The research group reviewed participants input and pro-
posed this unified version that was then reviewed by
all participants. Points of contact, what happened, and
treatment sections of the Patient Journey Map summa-
rized both people with IHD and health professionals’
views; the feelings and empowerment needs were based
on the input gathered from people with IHD. Only peo-
ple with IHD participated in the prioritization of their
needs.
Table 1: Focus Group guide for the exploratory phase with health professionals.
Presentation (5 min)
Name of the professional, specialty and association with empowerment.
Dene 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
environment – family
Who? Where? When?
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.

Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for
the Empowerment of People with Ischemic Heart Disease
Art. 9,page 5of13
To describe the experiences of people with IHD, we
reviewed and summarized the listening labs notes.
We developed the e-mpodera2 vCoP’s content framework
for people with IHD by adapting the prioritized empow-
erment needs and the materials proposed by the partici-
pants based on the EMPATHiE Consortium dimensions for
patient empowerment [23]. The EMPATHiE Consortium
dimensions have 3 pillars: i) the health literacy pillar con-
siders the skills needed to find, understand, appraise, and
apply information related to health and care services; ii)
the self-management pillar aims to promote healthy life-
style behaviours; and iii) the shared decision-making pil-
lar which is defined as a decision-making process jointly
shared by patients and their health care providers. To
evaluate the acceptability and usability of the e-mpodera2
platform, we analysed the participants insights provided
through open ended questions in development workshop
after the participants had used platform for the online
activities of the exploratory phase.
Results
We conducted the co-design process between March and
July 2019. Twenty-five people with IHD from the three
Spanish Regions (eight, six and eleven from the Canary
Islands, Catalonia, and Madrid, respectively), and ten
health professionals (two, two, and six from the Canary
Islands, Catalonia and Madrid, respectively) participated
in the co-design process of the vCoP (Tables 5 and 6).
Seven additional people with IHD participated in one
activity but were lost to follow-up, so they were not con-
sidered full participants. The sample included people
with IHD who showed strong knowledge and self-man-
agement skills (especially those who belonged to patient
organizations), as well as people with self-reported low
health literacy with respect to IHD. On average, partici-
pants with IHD were first diagnosed with IHD 5 years
prior to the study.
The co-design process involved two phases: i) the
exploratory phase, where the experiences and needs
for empowerment in IHD built the trajectory of care
for the condition and ii) the development phase,
where people with IHD prioritized the needs to be
addressed by the vCoP, proposed training content
for empowerment of people with IHD, facilitating
the development of the e-mpodera2 vCoP’s content
framework.
Table 3: Examples of online participation activities during the exploratory phase.
Challenge 1: Starting here (from the beginning)- Onboarding
the e-mpodera2 platform
How to use the platform (tutorial) and participants’ introduction
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

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the Empowerment of People with Ischemic Heart Disease
Art. 9,page 6of13
Exploratory phase
Points of contact, what happened, treatments, feelings,
and empowerment needs for the three stages of the tra-
jectory of care of people with IHD (diagnosis, post-diagno-
sis and long-term care) were visualised on the co-designed
Patient Journey Map (Figure 2). The experiences of peo-
ple with IHD and their empowerment needs were diverse
depending on their gender, socio-economic and family
situations, and on the impact the IHD had on their health,
social and work life.
In the remainder of this section we describe the diversity
of experience from people with IHD and identify empow-
erment needs on which the Patient Journey Map is based.
Experiences of people with IHD
Diagnosis stage
The vast majority of people that participated were diag-
nosed with IHD after having suffered a myocardial infarc-
tion, while two were diagnosed during routine controls
or follow-up of comorbid conditions. Not recognizing the
symptoms of infarction was common. As the most widely
known symptom of infarction was chest pain, people with
IHD who did not experience that symptom tended to not
recognize that they were having an infarct. Some thought
they were suffering from anxiety or stomach bloating.
Post-diagnosis stage
Those participants who had a second infarction tended to
immediately recognize the symptoms, as they did not vary
from their first infarction. Infarction was followed by fear,
bewilderment and disbelief that it happened to them.
People with IHD described the post-diagnosis stage as
the months after the diagnosis where there is still some
uncertainty about the adaptation to lifestyle changes and
the learning of skills to best manage the cardiovascular dis-
ease. It was also a period in which participants stayed alert
in regards with the disease and were motivated to change.
Not all participants had access to rehabilitation services
in this stage. This access depended on whether rehabilita-
tion was available locally or the service had waiting lists.
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

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the Empowerment of People with Ischemic Heart Disease
Art. 9,page 7of13
Participants, even those who had not received rehabilita-
tion, considered it an essential milestone in the empower-
ment process.
Long-term follow-up stage
In the long-term follow-up stage, participants reported
a decrease in alertness and motivation for change. This
decrease usually occurred between one and two years
after the infarction. After this one- or two-year period,
which varied for each participant, it was more difficult to
maintain heart-healthy habits.
Empowerment needs
Empowerment needs varied in the diagnosis, post-diag-
nosis, and long-term stages as can be seen in the Patient
Journey Map (Figure 2). We found needs can be classified
in three categories: information and knowledge needs,
needs related to psychological care, needs related to social
support in care.
The main barriers to empowerment as described by
people with IHD were consistent through all stages of the
patient’s trajectory and were related to precarious socioec-
onomic or work conditions, lack of family support/accom-
paniment, low digital health literacy, or lack of access to
adequate professional care or treatment (for example,
due to coordination issues between physicians). Job and
financial vulnerability made it difficult to access care, for
example rehabilitation, which requires a large number of
hours of attendance may require to take time off work.
Gender inequality meant greater barriers to self-care and
social support for women with IHD, as many of them had
assigned caretaking roles in their families (e.g. with other
dependents as child or elders).
Diagnosis stage
The identified needs included basic and general informa-
tion of the IHD, possible symptoms and activities that can
be carried out after a heart attack. Participants stated that
the empowerment process required them to overcome
the initial impact of receiving the diagnosis/of the infarc-
tion in order to incorporate healthy living recommenda-
tions, understand and manage the fear and uncertainty
associated with the infarction, and assume the disease
with a positive attitude. In relation to social support, the
fundamental care network identified by the participants
was their family who accompanied them throughout the
trajectory of care. Caring was not always easy, and partici-
pants considered that family members and other carers
needed support to recognize and to be able to help during
the recovery process, including its early stages.
Post-Diagnosis stage
In the Post-Diagnosis stage, the information and knowl-
edge needs shifted to personalized knowledge about
the individual impact of the disease, knowledge about
healthy activities adapted to each person’s circumstances,
and about the lifestyle changes necessary for leading a
heart-healthy life (regular exercise, healthy diet, and no
smoking).
Regarding psychological needs, participants with IHD
explained that it was necessary to become aware of the
sources of stress and learn how to reduce them, as well as
to improve their self-management of emotions. Lifestyle
changes required social support and implied negotiations
with family and other carers.
Long-term follow-up
In the long-term follow-up stage, participants, both peo-
ple with IHD and health professionals, suggested that
there was a need to use motivational techniques in order
to encourage people with IHD to adhere to the recom-
mendations regarding medication, diet, smoking cessa-
tion, and physical exercise after the first months or years.
The maintenance of healthy habits also required negotia-
tions with family and other carers.
For some participants, it was also empowering to build
clinical support networks, that is, networks consisting of
one or more health professionals to rely on in the long-
term follow-up. For other participants, patient organiza-
tions were an important network of social support and
Figure 2: Patient Journey Map.

Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for
the Empowerment of People with Ischemic Heart Disease
Art. 9,page 8of13
contributed to the maintenance of long-term heart-
healthy habits.
Development phase
The development phase assessed the acceptability and
usability of the e-mpodera2 platform from the perspective
of people with IHD. Then, this phase focused on the pri-
oritization of the empowerment needs and the formula-
tion of both the e-mpodera2 content framework for people
with IHD and contents for the vCoP.
Acceptability and usability of the e-mpodera2 platform
Most of the people with IHD found the e-mpodera2 plat-
form acceptable and usable, with the exception of some
older participants with self-reported low digital literacy.
Participants suggested some changes to improve the
platform, including adding a Spanish spell checker and
emoticons in the comment section, improving tools for
embedding videos, and a friendlier interface for voting
and commenting. All these changes were implemented in
order to improve usability.
Empowerment needs prioritization
The priority of empowerment needs varied by region,
based on the main barriers experienced by the peo-
ple with IHD in each context. In the Canary Islands,
psychological needs were identified as the most relevant,
while in Catalonia and Madrid the needs from all three
categories were seen as equally relevant. We describe
below the empowered needs that were prioritized in at
least two groups.
In the diagnosis stage, people with IHD considered that
it was a priority to begin to accept the diagnosis, including
being able to recognize and overcome fear, uncertainty,
and/or denial. They also pointed out that it is necessary
to receive basic information about the disease (risk fac-
tors, causes, etc.), information on how to make the transi-
tion from the hospital to daily life, and information on
the existence and benefits of rehabilitation. Finally, they
identified family support as essential to help recovery and
help take care of themselves.
In the post-diagnosis stage, the prioritized aspects were
to improve the self-management of emotions to face the
situation, regain confidence, and increase self-control. In
addition, people with IHD pointed out the importance of
receiving information on individualised risk factors and
personal health information associated with the infarct
(e.g. ejection fraction, number of vessels with lesions,
residual ischemia, etc.), as well as recommendations on
nutrition and recipes to maintain a heart-healthy diet. The
main barriers perceived after diagnosis included work-
related responsibilities, taking care of dependents, and
other socioeconomic difficulties.
In the long-term follow-up stage, the main challenge
was to maintain lifestyle changes over time and to con-
nect with support groups and patient organizations with
common objectives.
Prioritized empowerment needs were used by partici-
pants to elaborate example of contents for the CoP in the
development workshop. The final description of empow-
erment needs included in the Patient Journey Map was
revised and accepted by all participants in the online par-
ticipation process.
The e-mpodera2 vCoP’s content framework for people with IHD
The e-mpodera2 vCoP’s content framework for people with
IHD added, to the three aforementioned pillars, a fourth
one based on contributions from the listening labs related
to skills for the improvement of social and family support
in care needs and practical issues.
The e-mpodera2 vCoP’s content framework, including
examples of the content developed for the vCoP during
the face-to-face workshops, is presented in Table 7. Some
of these resources were transformed into online activities
and were piloted on the platform. Supported by a modera-
tor, two resources (interactive activity or challenge) were
proposed online each week. Additionally, participants
could open discussions at will and add content on their
own. This was the case in four occasions, in which par-
ticipants added ideas and commented on news related to
IHD. These contents were added to the final material pro-
posed for the vCoP.
Discussion
The co-design process allowed people with IHD to share
their experiences and empowerment needs, as visualized
in the Patient Journey Map. We adapted the mapping tech-
nique to elicit empowerment needs from the perspective
of people with IHD. Patient Journey Maps are increasingly
used in person-centred health service design, particularly
in association with quality improvement processes but the
technique is scarcely used in health research [24, 25]. We
have not found any previous study using a Patient Journey
Map to co-design a vCoP, with the exception of Coy et al.
(2019) [26] who used a similar design. More specifically,
their work used experience-based co-design to visually
represent the experience of children and their families,
and suggested areas for improvement that helped the
design of an educational tool.
Our co-design process also enabled the development
of multiple contents adapted to people with IHD needs
and priorities that will help to develop the e-mpodera2
vCoPs. The WHO Framework on Integrated People-Centred
Health Services encourages co-production of health ser-
vices that can meet people’s needs in the long term and
are coordinated both within and beyond the health care
system [29]. Co-design processes may serve to develop
health services that promote both person-centred and
integrated care [29]. We believe this Patient Journey Map
and the its inclusion in co-design processes may be trans-
ferable and can be adapted to design person-centred and
integrated health services for IHD such as rehabilitation,
lay educational materials, and other self-management
interventions.
Strengths and limitations
Patient Journey Maps help to easily visualise, share, and
co-produce knowledge [24]. The IHD Patient Journey Map
allowed us to show the changing empowerment needs in
the diagnosis, post-diagnosis, and long-term care stages.
This processual perspective helped to elicit empowerment
needs beyond the urgency of a myocardial infarction.

Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for
the Empowerment of People with Ischemic Heart Disease
Art. 9,page 9of13
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
disease, prevention and healthy
lifestyle
Do you know how your heart works?
What is ischemic heart disease?
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
emotional management
Tips for mental health
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
management
To improve awareness about
medicines management, as well
as knowing the food-medicine
interactions; drug interactions
among others
What to know about medicines interaction?
Mechanisms to avoid forgetting to take medication
Knowledge about healthy
habits and lifestyle (food,
exercise…) – habits change
To know resources for habit
change
How to start changing habits?
Food labelling: Fats, sugar, salt.
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
healthy food
How to read labels.
Recipes from famous people with ischemic disease
Healthy recipes competency
Exercise and physical activity
– sport
To get advice and routines for
applying physical exercise
What if I want to dedicate myself to my usual physical
exercise, despite my illness?
Stop smoking and drinking
alcohol
To share resources for smoke and
alcohol cessation
12 Tips to quit smoking
Self-tracking (weight,
emotions, sleeping, walking…)
To know how to self-track
measures
Basic information on physical self-control resources.
Essential questions: Control and monitoring of heart rate.
Resources for self-control: pulsations, blood pressure
monitor, pedometer.
Symptoms recognition To improve awareness about
symptoms recognition
To prepare cardiologist consultation
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
asking professionals doubts, and
other uncomfortable questions
Answers for uncomfortable or frequent questions
Shared Decision Making
Living will To decide how to manage will-
ing last decisions in different
scenarios
How to treat awkward issues with carers and family
How to speak about living will with family and carers
Preferences about treatment
and specific daily decisions
To improve awareness about
treatment possibilities, recovery
available and other daily decisions.
What to know about recovery options
Recovery decisions preferences To improve awareness about
recovery options
How to prepare cardiologist’s visit: Preparing a list of
questions
(Contd.)

Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for
the Empowerment of People with Ischemic Heart Disease
Art. 9,page 10of13
The co-design process established a partnership
between people with IHD, health care professionals, and
researchers that helped develop the e-mpodera2 vCoPs’
content framework. Participants produced an enormous
quantity of ideas for training resources and activities, and
most of them will be used in the randomized controlled
trial to test the effectiveness of the vCoP for improving
patient’s empowerment. vCoPs are highly participative
and dynamic, and the final contents will depend on the
interest and needs of its actual participants.
Lack of economic and human resources, barriers for
participants’ engagement and retention, and other prob-
lems can hinder co-design processes [16]. Ideally, the co-
design processes should include a maximum variation
sample to incorporate a diverse range of experiences.
Perspectives of women, elderly, minorities, migrants, and
socially excluded groups may add specificities that will
not be collected if they are not included in a participa-
tory process [17]. Nevertheless, maximum variation of
the sample was not achieved in our co-creation process.
A limited number of women with IHD (n = 8/25) partici-
pated. Their experiences and needs are specific [25, 27]
and were underrepresented in the co-design process.
Furthermore, all participants, except one, had experi-
enced a myocardial infarction so other experiences were
not included. We were not able to recruit minorities,
migrants, and socially excluded groups due to lack of
time and resources. Older and less digitally literate par-
ticipants found the e-mpodera2 platform difficult to use
and some participants did not conclude the process. As
noted by Greenhalgh et al. (2017) [28] older, sicker, and
less digitally literate people are less likely to benefit from
teleservices such as a vCoP. Engagement of people with
IHD in the conceptualization, design and recruitment of
this study might have helped to recruit more and more
diverse participants.
Another limitation of this study was the lack of training
for the research group in participation facilitation, which
was easily solved by capacity building within the group.
Conclusion
The co-design process conducted in this study was new
and exciting for the e-mpodera group. It resulted in a
strong collaboration between the research team, people
with IHD, and health professionals. The co-design pro-
cess resulted in a Patient Journey Map that helps to eas-
ily visualise the empowerment needs of people with IHD
in diagnosis, post-diagnosis, and long-term care stages.
Additionally, the Patient Journey Map could potentially be
adapted in the development of person-centred interven-
tions. Co-design also allowed us to develop training mate-
rials adapted to the needs and priorities of people with
IHD. The process generated many more content ideas
than expected, ultimately generating a rich and extensive
framework for the e-mpodera2 vCoP.
Additional Files
The additional files for this article can be found as follows:
• Additional le 1. GRIPP2 short form checklist. DOI:
https://doi.org/10.5334/ijic.5514.s1
• Additional le 2. Informed consent. DOI: https://
doi.org/10.5334/ijic.5514.s2
Acknowledgements
The authors would like to thank the participants in the co-
design process for sharing their experiences and knowl-
edge with us, and for the effort and time dedicated to the
project. Special appreciation is given to the patient asso-
ciations (Asociación de Cardiópatas de Madrid Sur and
Cardioalianza) that helped with the recruitment of people
with ischemic heart disease.
Authors are thankful as well to David Dinh and Truci
Nguyen for the design of the Patient Journey Map
infographic.
Reviewers
Hannah Johnson, Integrated Care Lead, Children’s
Health Queensland Hospital and Health Service,
Queensland, Australia.
Sue Sheridan, MIM, MBA, DHL, Director of Patient
Engagement Emeritus, Society to Improve Diagnosis in
Medicine (SIDM).
Competing Interests
The authors have no competing interests to declare.
Empowerment dimensions Learning objectives Examples of contents: co-created interactive
activities and challenges
Social and family support and practical issues
Return to normal life
(social and family activities,
and relationships, back
at work)
To manage skills to get progres-
sively to normal life, getting sup-
port from the social environment,
family and work.
To improve family awareness to
support relatives with ischemic
disease
Family communication: facilitate two-way communication
to improve how I communicate with my family and how
they communicate with me.
Economic and practical issues To manage difficulties at work
and/or economic problems after
disease
How to manage problems at work and practical issues
Share resources, patients’ organizations, expert advice and
other tools
IHD = ischemic heart disease.

Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for
the Empowerment of People with Ischemic Heart Disease
Art. 9,page 11of13
Author Information
The e-mpodera research group is formed by the authors
and Sofía Garrido-Elustondo, (Gerencia Asistencial
Atención Primaria, Servicio Madrileño de Salud, Red
de Investigación en Servicios de Salud en Enferme-
dades Crónicas (REDISSEC), Juan Carlos Obaya-Rebollar
(Centro de Salud Chopera, Gerencia Asistencial de Aten-
ción Primaria), Santiago Díaz-Sánchez (Centro de Salud
Pintores, Gerencia Asistencial de Atención Primaria), Luis
Morales-Cobos (Centro de Salud Las Américas, Gerencia
Asistencial de Atención Primaria), Ana Rodríguez-
Almodovar (UGC Cardiología, Hospital Universitario
Reina Sofía), Juana Mateos-Rodilla (Escuela Madrileña de
Salud, Dirección General de Humanización y Atención al
Paciente), Marta Ruiz López (CS Vicente Muzas, Gerencia
Asistencial de Atención Primaria, Servicio Madrileño de
Salud), Yolanda Canellas (CS Monovar, Gerencia Asisten-
cial de Atención Primaria, Servicio Madrileño de Salud),
José Ignacio Vicente-Díaz (CS Monovar, Gerencia Asisten-
cial de Atención Primaria, Servicio Madrileño de Salud),
José Carlos del Castillo (Área de prevención y medicina
cardiovascular. Hospital San Juan de Dios), Nuria Vallejo-
Camazón (Hospital Germans Trias i Pujol) Marta Ballester
(Avedis Donabedian Research Institute (FAD), Barcelona,
Universitat Autónoma de Barcelona, Red de Investigación
en Servicios de Salud en Enfermedades Crónicas).
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Toledo-Chávarri et al: Co-Design Process of a Virtual Community of Practice for
the Empowerment of People with Ischemic Heart Disease
Art. 9,page 13of13
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
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