A Journey to Authentic Patient Engagement

The Journey to Becoming a Patient Advocate

The journey from being an ordinary patient to becoming a dedicated patient advocate is long and requires great willpower. It often starts with a personal experience where you are confronted with the harsh reality of illness and the complexity of healthcare. Many patients find inner strength and a desire to help others by sharing their experiences. This transformation involves building knowledge, networks and the ability to communicate effectively with both healthcare professionals and other patients.

To become a respected patient advocate, you must also fight to be heard and taken seriously. This often involves fighting prejudice and constantly striving to prove that your contributions are valuable. Through persistence and passion, many patients are able to change the dynamics of the system so that their voice becomes an integral part of decision-making processes.

The importance of the Patient's Perspective

Understanding a disease through medical books and research is one thing; experiencing it first-hand is quite another. Patients bring a first-hand insight into what it's like to navigate through diagnoses, treatments and the emotional challenges that come with them. Their experiences often reveal gaps in the system that no statistical analysis can illuminate. That's why the patient's point of view is not only valuable, it's indispensable for a holistic healthcare system that truly takes into account human needs and experiences.

Respect for the Patient Advocate's Work

The respect that patient advocates deserve must be heartfelt and pervasive. It's not enough to simply listen; their insights and experiences must be actively integrated into policies and practices. Respect also means giving them the necessary resources and platforms to share their stories and recommendations in a meaningful way, as is the case with EIT Health (Community EIThealth.eu / Lisbeth Oxholm Snede (User 6757526)), or Patientengagement Synapseconnect (Patientengagement Synapseconnect.org /Lisbeth-oxholm-snede), EUPATI (https://eupati.eu/ ) or at Patients Unite (https://patientsunite.eu/ ). This means recognising their unique contributions and including them as equal partners in healthcare development.

Patient advocates work tirelessly to improve conditions for others. Their engagement is driven by a deep desire to make a difference and their efforts can lead to more empathetic, effective and patient-centred care. By respecting and valuing their work, we can create a healthcare system where the patient's voice is not only heard, but also shapes the future.

The Voice of the Patient

In the complex web of healthcare, there is one thread that is often overlooked but is indispensable to the strength of the whole: the patient voice. Consultation on patient involvement from the patient's point of view is not just a necessity; it is a basic human right. Patients, at the centre of the storm of illness, carry invaluable knowledge that can shape and improve healthcare as we know it.

Their journey to becoming ‘real’ patient advocates is both demanding and profound, and it is vital that their contribution is recognised with the respect it deserves.

Value-Based Health Care (VBHC) and Patient Involvement

Value-Based Health Care (VBHC) is an approach that focuses on maximising value for patients by delivering the best possible healthcare at the lowest possible cost. When patients are involved from the beginning of a project, their input can lead to better designed initiatives and more effective implementations. Integrating patients' perspectives helps identify what really matters to them, which can result in more targeted and successful projects.

Patient involvement in VBHC can also save money in the long run. When patients' needs and preferences are understood and respected, unnecessary treatments can be avoided and treatment pathways improved, reducing waste and increasing efficiency. Getting patients on board from the beginning of the idea ensures that projects go the right way from the start, reducing the risk of costly detours and errors. This approach can create more sustainable healthcare that delivers high quality at a lower cost.

This story illustrates the critical importance of patient engagement through the eyes of patients themselves. It's a reminder that at the heart of any healthcare system should be those it serves: the patients themselves.

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

//Lisbeth