XPatient2025

Introduction to Digital Health Paradigms

Importance of New Paradigms in Digital Health Research

• Marta Imerich introduces the significance of new paradigms in digital health research, emphasizing their relevance for today's session.

• She highlights that the future of health is digital, a statement supported by the Director-General of WHO from 2019, indicating a pre-pandemic foresight.

• The focus is on three key aspects: placing individuals at the center, fostering innovation through research, and ensuring impactful outcomes in health.

Interconnection Between Human and Planetary Health

• Imerich discusses how actions in health impact planetary well-being and vice versa, stressing the need for dual-focused research.

• She outlines two main areas for research: clinical translation and education/empowerment within digital health contexts.

Shifting Towards a Person-Centered Health Paradigm

Characteristics of the 7P Health Paradigm

• The proposed paradigm includes preventive measures to address potential health issues proactively while promoting overall wellness.

• It emphasizes predictive capabilities using AI and data science to enhance early diagnosis and personalized care approaches.

Community Involvement in Research

• Imerich stresses that meaningful research must involve community participation to address broader population needs effectively.

• The goal is transformative research that integrates gender equity and social inclusion principles into digital health initiatives.

Ensuring Equitable Access to Digital Health Solutions

Key Principles for Inclusive Research

• Emphasizes the necessity for equitable access to technology and connectivity as fundamental components of effective digital health solutions.

• Highlights the importance of integrating evaluation mechanisms to assess impact alongside innovation efforts within healthcare systems.

Transitioning to Aina Fuster's Presentation

Introduction of Aina Fuster

• Aina Fuster introduces herself as a pharmacist with expertise in digital health, currently involved in hospital innovation projects.

• She presents two projects: one related to her doctoral thesis on digitizing depression care within primary healthcare settings.

Engaging Patients in Research Methodologies

• Fuster initiates an interactive exercise aimed at illustrating the importance of incorporating patient perspectives into complex problem-solving processes.

Overview of the Design Thinking Methodology

Stages of Design Thinking

• The design thinking process typically consists of five stages, starting with empathy to understand the problem.

• The initial stage involves gathering insights about the issue at hand.

• Following this, a divergent phase generates numerous ideas related to the identified problem or care process, such as addressing depression.

• After idea generation, the next step is convergence where focus is placed on defining a specific question or problem to tackle.

• A clear definition of the problem leads into ideation, where further divergence occurs to explore potential solutions.

Prototyping and Testing

• Once a problem is defined, teams return to generating ideas that could provide solutions.

• This culminates in creating a prototype based on selected proposals which are then tested for effectiveness.

Project Focus: Digitalization in Depression Care

Objectives and Methodology

• The project aimed at digitizing the care process for mild to moderate depression within primary healthcare settings.

• Specific objectives included defining care processes and identifying unmet needs to adapt digital health tools accordingly.

• Goals also encompassed understanding workflow relationships in primary care and detecting technological solutions for unmet needs.

Stakeholder Engagement

• A robust empathy-building methodology was employed involving various stakeholders including patients and healthcare professionals.

• Two workshops were conducted with all stakeholders participating together in September and October 2024.

Workshop Activities and Findings

Defining Care Processes

• Participants engaged in activities typical of design thinking aimed at mapping out their experiences within the care process for depression.

• Insights revealed that 75% of patients self-identify their emotional distress before seeking help from primary care services.

Detection by Healthcare Professionals

• Nurses and doctors also play significant roles in identifying emotional distress among patients but less frequently than patients themselves do.

Understanding Care Actions

Patient Journey Through Care Process

• The patient journey begins with self-detection followed by scheduling an initial visit primarily through nursing or family medicine services.

• Emotional well-being representatives assess cases later in the process, determining suitability for group therapy sessions.

Role of Other Professionals

• Pharmacy involvement includes medication follow-up while social work typically appears towards the end of treatment processes.

Identifying Unmet Needs

Prioritization of Needs

• After defining the assistance process, participants prioritized unmet needs based on their experiences during workshops.

• The top priority identified was information management issues affecting both professionals' holistic view of patients and communication regarding referrals.

Support for Professionals

• Second priority focused on providing additional resources to professionals ensuring continuity in managing depression cases.

• Thirdly, decision support systems were highlighted as necessary tools for better management of waiting lists and referral information improvement.

Technological Opportunities

Exploring Digital Health Tools

• A systematic review was conducted to identify existing digital health tools relevant to depression management within primary care settings.

• Mixed perceptions emerged regarding internet-based interventions; while access is high, clarity on effective applications remains low.

Hybrid Interventions

• Hybrid interventions combining virtual and face-to-face elements were recognized as most suitable according to stakeholder feedback.

Innovative Application Ideas

Conceptualizing Useful Applications

• Suggestions included apps functioning similarly to parking reminders that could assist users with medication adherence.

• Tracking applications like "Globo" were proposed for monitoring referral statuses throughout treatment pathways.

Community Building Features

• Ideas also encompassed creating digital communities akin to platforms like Siri or Instagram that foster peer support among users dealing with similar issues.

Designing a Tool for Evaluating Depression Apps

Project Overview

• The project aims to design and co-create a tool that evaluates existing applications in the market for depression, having won funding four years ago.

• Collaboration involved both professionals and patients in the design process to ensure relevance and usability of the tool.

Objectives and Methodology

• Objectives were established through Design Thinking, focusing on technology acceptance by both professionals and patients, content reflection, and co-creation of the tool.

• A qualitative study was conducted using Design Thinking principles to gather insights from participants.

Workshops and Participant Engagement

• Ideation workshops were held with two groups: individuals experiencing depression and healthcare professionals.

• These workshops took place in October 2023 and February 2024, involving ten participants across three autonomous communities.

Findings on Technology Acceptance

• Results indicated a generally positive perception of technology among patients, although some concerns were raised about app selection difficulties.

• Notably, 36% expressed negative perceptions related to choosing from numerous available applications.

Concerns About App Usage

• Issues highlighted included potential dependency on technology during low moods leading to excessive use or overexposure.

• Questions arose regarding whether an app could effectively train users in emotional management or accurately measure mood states.

Features of the Evaluation Application

Application Functionality

• The evaluation application is designed to categorize apps based on their intended use, utility, and objectives.

• It will identify apps tailored for specific issues like grief management based on user needs.

Information Transparency

• Evaldepabs aims to provide comprehensive information about evaluated applications including descriptions, costs, reliability indicators, scientific backing, and conflict of interest disclosures.

User Privacy Considerations

• Applications listed must comply with data protection laws ensuring transparency regarding data usage for registered users.

User Interface Design

Accessibility Features

• The interface should be visually appealing with large text options and non-intrusive notifications for better user experience.

Application Interaction

• Users can rate applications they wish to evaluate while accessing rankings that suggest suitable apps based on compatibility scores.

Importance of Inclusive Research Processes

Collaborative Research Approach

• Emphasizes the necessity of involving all stakeholders in research processes to address complex problems effectively.

The presentation concludes with an invitation for questions from attendees before transitioning to another topic.

Importance of Patient Experience in Surgery

Overview of the Speaker's Interest

• The speaker emphasizes their interest not only in the surgical process but also in the entire patient journey from home to recovery.

• They highlight the necessity for intervention until patients are fully reintegrated into their personal lives.

• A timeline of their surgical innovations is introduced, indicating a structured approach to improvements.

Development and Funding

• The idea originated during a master's program at BOC from 2019 to 2021, leading to discussions with hospital management.

• Despite initial challenges, funding was secured by September 2021, allowing for team formation and project initiation.

• The funding was crucial for centering patient experience as a primary objective based on insights gained during the master's program.

Budget Allocation and App Development

• A budget of €15,000 was allocated specifically for enhancing patient experience within the surgical context.

• The development of a web app aimed at improving pre-surgical communication was initiated but faced integration issues with outdated hospital systems.

Evaluation and Impact of Surgical Innovations

App Usage Statistics

• By March 2023, there were significant increases in downloads of the app developed for surgical procedures.

• Currently, there are 54 published procedures available through this app, which is continuously updated as new surgeries are added.

User Engagement Metrics

• Data shows that user engagement is high with specific procedures being among the most viewed; projections indicate reaching 96,000 visits by 2024.

Incorporating Patient Feedback into App Design

Introduction to Patient-Centric Approach

• Airene discusses how essential it is to incorporate patient feedback into developing solutions that meet their needs effectively.

Methodology for Gathering Insights

• Emphasizing that professionals often assume they know what patients need without directly asking them can lead to surprises when feedback is solicited.

Phased Approach to Co-Creation

Three Phases Explained

• The co-design process involves three phases: creating a persona map, conducting fieldwork analysis, and engaging in co-creation sessions with patients and professionals.

Persona Mapping

• In phase one, they create detailed profiles (e.g., "Pedro") representing complex surgical patients' characteristics and expectations.

Fieldwork Analysis

• Phase two includes direct observations and interviews focusing on various stages: before surgery, during surgery, and post-surgery experiences.

Observational Studies and Findings

Analyzing Patient Experiences

• After gathering data from interviews and observations across different stages of care (pre-, intra-, post-surgery), key insights were identified regarding patient emotions and communication channels used.

Identifying Areas for Improvement

• Specific instances where communication failed or where patients felt unprepared highlighted critical areas needing improvement within the healthcare system.

Prioritization of Insights in Surgical Processes

Overview of Insights

• A total of 25 insights were prioritized based on the analysis of available information.

• Not all insights could be addressed simultaneously; a selection process was necessary.

• The team conducted an exercise to identify which insights were most critical and feasible for initial work.

Key Themes Identified

• Two main themes were prioritized, each encompassing several subtopics.

• One theme focused on improving information throughout the surgical process: pre-operative, during surgery, and post-operative care.

Pre-operative Information Enhancements

• Emphasis was placed on enhancing preoperative information, including anesthetist instructions and preparation details.

• Surgeons were encouraged to provide clearer pre-intervention information before patients entered the operating room.

Post-operative Information Improvements

• Addressing patient questions and concerns that arise after surgery was identified as crucial.

Personal Belongings Management

• Another key theme involved improving the management circuit for personal belongings to reduce loss incidents.

• Additionally, there was a focus on better management of patient prosthetics.

Patient Feedback Integration

• After analyzing professional input, it was essential to validate findings with patient feedback regarding their priorities.

Standardizing Information Needs

• Patients expressed a need for standardized information about their interventions in an understandable format.

Awareness of Adverse Effects

• Knowledge about potential adverse effects and follow-up visit schedules was highlighted as important by patients.

Communication During Surgery

• The necessity for effective communication regarding waiting areas for family members emerged as a significant concern.

Family Updates During Surgery

• Proper management of SMS updates to families while patients are in surgery is vital for maintaining communication.

Post-surgery Considerations

• Immediate post-operative information needs included guidance on managing companions and ambulance arrangements.

Educational Support Requests

• Patients requested educational courses to aid in their recovery following surgery.

Project Outcomes

• The efforts resulted in 37 improvement projects, with 12 being prioritized based on patient involvement from 30 participants and their companions.

Multidisciplinary Team Involvement

• A multidisciplinary team comprising 22 professionals contributed significantly to achieving satisfaction among both patients and staff.

Final Conclusions

• Incorporating patient experience into healthcare requires collaboration among professionals, patients, and center leadership.

Professional Engagement Challenges

• Resistance from professionals often arises due to familiarity with existing processes or perceived time constraints.

• Some professionals believe current practices are sufficient or fear change may disrupt established routines.

• There is also a noted lack of training concerning patient experience among new healthcare professionals.

• Ultimately, integrating patient experiences should not be viewed as innovative but rather as an essential reality within healthcare systems.

Challenges in Patient Participation

Accessibility Issues

• Difficulty for individuals to participate due to mobility challenges, especially when travel times are long.

• Example of a patient invited to a meeting that lasted 20 minutes but required four hours of travel, highlighting the disconnect between healthcare providers and patient realities.

• Emphasizes the need for awareness regarding patients' circumstances to bridge the gap in participation.

Digital Literacy and Inclusion

• Advocates for digital literacy and system digitization as means to enhance patient engagement, particularly in challenging environments.

• Acknowledges that digital health initiatives must prioritize patient benefits as the primary goal.

Ethical Considerations in Health Research

Bioethics Principles

• Reminds that beneficence, one of the four bioethical principles, should be perceived by patients rather than healthcare professionals.

• Stresses that developing tools without clear benefits for patients can lead to disengagement from healthcare initiatives.

Patient Engagement Importance

• Highlights potential negative outcomes if patients feel their contributions do not lead to tangible improvements in care or feedback mechanisms.

Patient Commitment and Application Usage

App Engagement Statistics

• Studies show a significant drop-off rate with health applications; about half are uninstalled within a month despite initial promise.

• Patients often find little value in apps developed without their input, leading them to prefer more familiar platforms over new health technologies.

Strategies for Enhancing Patient Involvement

Outreach Efforts

• The team reached out to the Catalan Patients Council aiming for broad patient involvement across regions through social media and public appearances.

Inclusive Sessions

• Conducted participatory sessions across provinces while also offering virtual options for those unable to travel due to health issues.

Methodology and Findings from Participatory Sessions

Session Structure

• Focused on creating a set of recommendations (a decálogo), guiding researchers on engaging with patients effectively during digital health research.

Diverse Participant Insights

• Noted challenges in keeping discussions focused on research rather than immediate healthcare access issues faced by participants.

Outcomes of the Initiative

Publication and Recommendations

• Resulted in a scientific publication detailing ten key recommendations aimed at improving patient involvement in health research published in Patient Education and Counseling.

Representation and Support

• Collaboration with TIC Salut Social Foundation emphasized the importance of including patient representation within research projects.

Key Insights on Patient-Centered Research Collaboration

Importance of Patient Involvement

• Emphasized the need for patients to be at the center of research processes, ensuring their active participation throughout, not just at the beginning.

• Suggested regular follow-up meetings and feedback sessions with patients after project completion to maintain engagement and gather insights.

Responsibilities in Research Projects

• Highlighted the importance of being responsible in managing public resources and recognizing patient contributions within healthcare systems.

• Advocated for open participation from diverse profiles, ensuring accessibility to all potential participants.

Accessibility Considerations

• Stressed that meetings with patients must ensure clear accessibility instructions to avoid logistical issues.

• Addressed various sensory differences among patients, such as hearing or visual impairments, which should be considered during planning.

Catering Needs for Inclusivity

• Discussed the challenges of providing appropriate catering options for patients with dietary restrictions, emphasizing that attention to these details shows care and enhances participation.

• Noted that accommodating specific dietary needs is a valued gesture by participants, reinforcing their sense of belonging.

Digitalization's Role in Reducing Barriers

• Mentioned how digital tools have significantly helped eliminate barriers to participation through virtual meetings.

• Encouraged involving individuals from various age groups and cultural backgrounds in research discussions.

Strategies for Effective Patient Engagement

Professional Appearance During Meetings

• Recommended avoiding traditional white coats during patient interactions to reduce intimidation and encourage open communication.

Gathering Valuable Feedback

• Stressed the importance of collecting all patient contributions, regardless of perceived significance, as they can lead to valuable insights.

Practical Outcomes from Research Projects

• Emphasized seeking practical results that align with patient expectations and needs rather than solely focusing on statistical significance.

• Warned against prioritizing statistical outcomes over real-world applicability in clinical settings.

The Decalogue: Guidelines for Patient-Centric Research

Availability of Resources

• Introduced a decalogue available online (in multiple languages), aimed at guiding researchers on effective patient involvement strategies.

Sensitivity Towards Patients' Needs

• Concluded by reiterating that patient involvement is crucial throughout research processes while being sensitive to their unique needs.

Reflections on Personal Research Experiences

Learning from Failures

• Shared personal experiences regarding failures encountered during a research project focused on autism spectrum disorders (ASD).

Development of Supportive Tools

• Described efforts made towards developing an application designed for both professionals and families dealing with ASD interventions based on evidence-based practices.

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Insights on Autism and Communication Apps

Key Findings from Research Sessions

• The research sessions at Sabadell revealed significant insights regarding health literacy for families and individuals affected by autism spectrum disorder (ASD).

• Families expressed a lack of interest in an app for selecting psychosocial interventions; instead, they desired an app providing information about ASD and communication with non-specialist health professionals.

• There was a specific need to communicate effectively with family doctors, teachers, employers, and relatives about ASD-related issues.

• Researchers acknowledged the necessity to adapt their project focus based on user feedback, emphasizing the importance of patient input in developing tools.

• Previous publications indicated that decision-making tools often prioritize solutions rather than addressing underlying problems.

Development Challenges Faced

• The team initially planned to create an app focused on psychosocial interventions but shifted towards developing a communication-focused app due to user feedback.

• The COVID pandemic interrupted progress on the communication app while work continued on scientific evidence aspects.

• A systematic review conducted revealed existing literature was inconclusive, necessitating more well-conducted clinical trials to draw valid conclusions.

• Subsequent attempts focused solely on high-quality clinical trials related to psychosocial intervention efficacy after excluding unreliable sources.

• Ultimately identified 623 publications with only 42 high-quality clinical trials focusing primarily on social communication interventions.

Lessons Learned and Future Directions

• The field of psychosocial interventions remains emergent and heterogeneous, complicating the development of effective apps based on current evidence.

• Researchers concluded that not all proposed apps could be developed due to insufficient scientific backing for their effectiveness.

• Despite setbacks, researchers aimed to provide recommendations for improving future research methodologies in ASD studies through infographics and animations.

• Eventually developed a multilingual app (Catalan, Spanish, English), focusing specifically on enhancing communication skills among users affected by ASD.

• A critical takeaway is the necessity of involving users in research hypothesis formulation to ensure relevance and applicability.

Engagement with Users Post Development

• Discussion opened up regarding user access to apps; it was clarified that anyone can download the autism communication app without needing professional recommendation.

• Plans were discussed for training healthcare professionals to better involve patients in research projects moving forward.

Discussion on Communication Tools in Healthcare

Introduction to Communication Resources

• The discussion begins with the introduction of a video resource featuring professionals, parents, or teachers explaining how to work on communication skills.

Examples from Participants

• Participants are encouraged to share their own examples related to communication, specifically mentioning individuals like Aina, Irene, and Esther.

Application Download Information

• Mention of Evaldepabs application which can be downloaded from the Play Store.

• The app is currently undergoing validation processes and requires a user ID and password for access.

Call for Participation in Validation

• There is an invitation for healthcare professionals or acquaintances to participate in the final validation process of the application.

Features of the My Chirófan App

General Accessibility

• The My Chirófan app is described as accessible for everyone, allowing downloads without needing specific user credentials initially.

Services Offered

• It includes various services within its platform that are open to all users who download the app.

Patient-Centric Approach

Data Privacy Considerations

• The app contains features that require personal data from patients but emphasizes general information rather than individualized recommendations.

Engagement and Feedback Mechanisms

Sharing Resources

• A request was made to share a public video link in the chat for interested participants.

Encouraging Questions

• Participants are invited to ask questions either through chat or by unmuting themselves during discussions.

Reflections on Challenges and Lessons Learned

Final Thoughts from Participants

• A participant suggests sharing key challenges faced or lessons learned throughout their experiences in patient care.

Importance of Motivation

• Emphasis on motivating healthcare providers involved directly with patients while encouraging them to look beyond immediate tasks.

Need for Feedback

• Highlighting the importance of providing feedback to patients about their contributions and involvement in projects.

Collaborative Research Efforts

• Stressing collaboration with patients as essential for improving research quality and outcomes beneficially impacting patient care.

Conclusion: Future Directions in Health Research

Digital Transformation in Health Research

• Concluding remarks emphasize that future health research must integrate affected individuals' perspectives right from inception for impactful results.

Gratitude Towards Participants

• Appreciation expressed towards attendees for their participation, highlighting that shared insights enhance collective knowledge.