Raw Patient vs. Patient Expert: A Critical Examination of Patient Engagement

In patient engagement and knowledge co-production, a distinction is often made between ‘raw patient’ and ‘expert patient.’ This distinction creates a necessary dialogue about how we can build capacity to support patients in becoming active and engaged participants in healthcare decisions. There is a perception that raw patients lack interest in participating, but others suggest that a lack of time and energy on the part of professionals may be the reason for patients' absence in important conversations.

This brings us to an important question: What does it really take to get patients more involved and how can we disrupt the structures that inhibit their participation? Can we adjust our expectations of patient engagement and lower the bar to make it easier for more patients to participate?

Patient engagement after interviews: New perspectives

After a series of interviews with patients and healthcare experts, we've gained insights into how patient engagement can be strengthened and have a real impact on both patients and healthcare providers. Reflections from these interviews show that the collaboration has provided new perspectives on how we view the role of the patient in the healthcare system and how we can work to ensure more inclusion in the future.

Critical Reflections

1. Practitioner Perspective: One of the important outcomes of this collaboration is how it has empowered the healthcare professionals who have been involved. Their experience of working closely with patients has broadened their understanding of the patient perspective and led to a deeper appreciation of the value patients can bring to the table.

2. patient engagement: Patient engagement is wide-ranging, and there are both opportunities and challenges when it comes to including them in difficult conversations about health and treatment choices. For raw patients, capacity building can be key to empowering them to take an active role. Patient advocates and patient experts often have a greater ability and willingness to engage on these topics, but again, their health status or fear of damaging future collaborations with industry may reduce their participation.

Capacity Building: An Important Key

One of the most important reflections from the interviews is about capacity building. If we are to achieve higher levels of patient engagement, we need to invest in providing patients with the necessary skills and knowledge to participate meaningfully. It's not just about inviting them into the conversation, but also giving them the tools to navigate complex health policy and treatment-related issues.

Capacity building also empowers patients to make informed decisions, participate in debates with confidence, and most importantly, to feel heard and respected in the spaces where their input is crucial. By empowering patients, we empower not only them, but the entire healthcare system.

?PiCC United: A Platform for True Patient Engagement

It is precisely because of these challenges that PiCC United (Patient Involvement and Collaboration Community) has been established. We recognise that patients' voices are too often overlooked or undervalued, especially when it comes to complex healthcare discussions and decision-making processes. PiCC United was created to change this dynamic and serve as a platform that fosters true patient partnerships. Our mission is to empower patients as equal partners, not as symbolic figures, but as real contributors who have valuable insights and experience to offer.

By focusing on capacity building and creating resources that make it easier for patients to participate in decision-making processes, PiCC United is committed to lowering the barriers to patient engagement. We create a space where both patients and experts can meet as equals and where patients' perspectives are heard and valued. Our vision is to ensure that all patients have the opportunity to participate in the healthcare system in a meaningful way - regardless of background or previous experiences.

Conclusion: Opening the Doors to More Patient Voices

Patient engagement is a journey, and both raw patients and patient experts have a role to play. By lowering the bar for participation while building capacity, we can create a future where patients are true partners in decision-making. This is not only beneficial for patients, but also for professionals who will benefit from the insights patients can provide. We must continue to ask critical questions about why patients are not always involved and how we can change this for the better.

Follow PiCC United (Patient Involvement and Collaboration Community) on LinkedIn to learn more about how we are working to promote true patient partnerships and how you can be part of the movement towards a more inclusive and patient-centred healthcare system. We'll continuously share updates, resources and opportunities to engage as a patient or professional.

Feel free to share your experiences and perspectives in the comments below, both as a patient and as a professional.

// Lisbeth

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