Figure 1
Co-design process.
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 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 | |
[i] IHD = Ischemic Heart Disease.
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 experience 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 example of the moment/s in which you have skipped the recommendations 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 |
[i] 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 |
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 |
Figure 2
Patient Journey Map.
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 willing 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 |
| 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 progressively to normal life, getting support 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 |
[i] IHD = ischemic heart disease.