Conclusions and reflections
This page presents the main findings and insights from this research project.
I would change something and that’s primarily improving the education around the condition. As with most education, storytelling is often the foundation of learning. I will share some of our true-life stories of navigating several professional services, with an aim to enlighten healthcare professionals about life with the condition.
Provider and Caregiver
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I was not involved in any study as a co-producer or collaborator; I was a lab rat.
Want to be an active meaningful participant in the discussion about my health.
Patients as partners
People desire greater involvement in healthcare decisions and seek to actively influence the direction and outcomes of research. They want their voices heard and their experiences considered to ensure that both care and studies are more aligned with their needs and realities.
Supporting data :
Reflection questions
Is the healthcare system, including providers and researchers, prepared to transition towards a future where patients are not seen merely as customers or recipients of care, but as educated partners whose voices are valued and heard?
Beyond this provotype, what other methods can be employed to genuinely include patients and ensure their voices are effectively heard?
Who should be responsible for managing the data and oversight of applications like the provotype to ensure accountability and trust?
Do researchers and providers want in?
Patients, providers, and researchers are all aware of the gaps between their respective silos and how these gaps impact their work and the quality of care. While patients are eager to participate and have a voice in the discussion, providers and researchers are often hesitant to see the value in joining these conversations. There may be various reasons for this hesitation, but it is crucial to find ways to include them in research and studies like this to capture the full scope of experiences and insights.
Supporting material :
Reflection questions
What specific barriers might be causing hesitation among providers and researchers to participate in conversations with patients, and how can these barriers be effectively addressed?
How can the value of inclusive discussions that involve patients, providers, and researchers be demonstrated to encourage greater participation from all parties?
How can we effectively motivate providers and patients to collaborate with each other?
The future of healthcare: integrating patients' lived experiences into decision-making
Despite progress, there is still a significant gap between individuals and the healthcare system. The system has a long way to go in effectively incorporating people's voices and ideas into decision-making processes. Patients often feel unheard, and their insights and experiences are frequently overlooked. Bridging this gap is crucial for creating a more inclusive, responsive, and patient-centered healthcare environment. It requires systemic changes to ensure that patient input is not only acknowledged but actively integrated into the development and implementation of healthcare policies and practices.
For healthcare to advance and stay relevant, it needs to integrate exploratory design research alongside evidence-based research. This combination will provide a more comprehensive understanding of patient needs and experiences, ultimately leading to better health outcomes and innovations in care.
Supporting material :
Reflection questions
How can healthcare organizations value and balance exploratory design research with evidence-based research to gain a comprehensive understanding of patient needs and experiences?
It’s not about us vs. them
In many discussions about patient-centered care and patient dissatisfaction, providers often feel offended because they are doing their best within the system. However, the more I spoke with people, the more I realized that providers themselves are also unhappy with many aspects of the current healthcare system:
"I think the issue here is not a "us vs. them" situation, but a recognition of the fact that not every doctor will be able to help every patient. It's not because doctors are cold hearted or don't care about patients- it's simply a limitation of being human and not having all the answers. The system itself also limits physicians- like insurers endlessly pressuring them to keeps care costs low, denying coverage for tests, medications, prior auths etc. I believe the intention of people sharing stories about their health journey are not to paint physicians as villains, but to emphasize the power of self-advocating. The key to success, I think, is to partner with your physician in your healthcare, to work together as a team. But it is also fair to say that not all physicians operate that way. In addition, not all patients feel comfortable taking ownership of their healthcare decisions and that's why stories like this are so important to share."
Dahlia Attia-King
Supporting material :
Interviews with people living with diabetes and or Long covid→
Reflection questions
How can the power dynamics within healthcare be transformed so that patients' lived experiences are valued and providers see them as partners in navigating systemic challenges?
How can providers effectively impact and change the systemic barriers that affect both themselves and their patients?
Whether we like it or not, social media is a crucial part of the patient journey.
The current healthcare system cannot fully address all patient needs, and providers often struggle to support patients as much as they desire. Social media has become a vital component of many people's care journeys. Instead of discouraging its use, we should find ways to mitigate concerns, such as misinformation. Providers I spoke with were worried about misinformation, even though research shows that misinformation is rare in these communities and is quickly corrected when it occurs (excluding anti-science communities).
Rather than advising patients to avoid social media, we should create spaces where they can share what they've learned with providers and ask for feedback. By doing this, we can bridge the gap in understanding and learning. Let's use available resources effectively until we can design and integrate specific platforms into the healthcare system that truly hear and address patients' voices.
Supporting material :
Reflection questions
In what ways can providers be educated and equipped to engage with patients on social media platforms in a way that enhances care without compromising professional boundaries?
How can the healthcare system develop and implement specific platforms that are designed to hear and address patients' voices, integrating them seamlessly into the broader healthcare infrastructure?
Exploratory design research works!
The topic I chose to work on is not commonly studied in in healthcare research space. However, patients seem to understand its value and remain highly engaged throughout the process. They actively participate in discussions, even when complex ideas and topics in healthcare are involved. They found it easy to explain their experiences using the interactive toolkit and had a lot to share, indicating a significant area that remains largely unexplored.
Supporting material :
Reflection Questions
What strategies can be implemented to encourage more researchers to explore unconventional topics in healthcare through design research?
How can we demonstrate the value of exploratory research to support its large-scale implementation and effectively measure its benefits and success?