White logo with three abstract human figures above the text "ADIPOSITAS PACT STICHTING | FONDATION PACTE ADIPOSITE FOUNDATION FOR THE RIGHTS OF CITIZENS WITH OBESITY" on a light background.

Pacte Adiposité – Adipositas Pact is a Private Foundation established under Belgian law representing the rights of citizens with obesity.

 

Chapter 6

The right toinformation about yourstate of health

The right to patient information in Belgium is enshrined in law and practice. However, this assumes that all patient primary health data s collected as part of the Electronic Health Record. This is not the case for People Living with Obesity who undergo physical therapy, psychological therapy and therapeutic nutrition as well as some elements of social prescribing. Not all of these may be offered as part of an integrated medical service or by “conventioned” health practitioners

Our study signalled that 95% of participants indicated the importance of having access to their health data on obesity. But the usefullness or comprehensibilaty of the provided medical information is doubted by participants.

Endorse this Chapter

Table of Contents

  1. A protected legal status for the 4.5 million People Living with pre-Obesity and obesity in Belgium
  2. The right to a quality service from early diagnosis and screening through to treatment and long term management.
  3. A right to access to early diagnosis and screening for obesity in its own right
  4. Access to acute interdisciplinary treatment and long-term management
  5. The right to free choice of your healthcare provider
  6. The right to information about your state of health
  7. Rights concerning primary and secondary use of our health information
  8. The right to participate in shaping, monitoring and evaluating the healthcare system from policies to practices

Is far too little information in it that we, the non-doctors, can understand, everything is too much in medical terms

~(Patient)

With the ongoing work on digitalising all health information and making it accessible to patients (Health Dataspace), more remains to be done specifically for People Living with Obesity; particularly because it is associated with 200+ medical complications. As such:

  1. The incoming Belgian Health Data Agency should be mandated to collaborate with People Living with Obesity and other interested parties to ascertain the types of data that should be collected (and what is missing) with a view to patients being empowered to be a true partner in our own health.
  2. As part of the digital agenda for Belgium, Government agencies should proactively seek to publicise patient-friendly sources of accurate information on the biology of obesity and health impact.
  3. People with Obesity should have the right to provide deeper access to their health information to Primary Care health practitioners, community pharmacists, Psychotherapists and other related health professions.
  4. People with Obesity should not have to remember to opt-in to receive information on their electronic health record for every instance of lab test, consultation or prescription.
Chapter 5
Chapter 7
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Acknowledgements

The Foundation for the Rights of Citizens with Obesity is a non-profit Private Foundation established under Belgian law, led by citizens of lived experience with obesity representing our rights towards access to healthcare.

This project has been driven by and for us in collaboration with VUB and KU Leuven as Research Partners.

We would also like to acknowledge the financial support and contribution of expertise as part of the multi-stakeholder focus groups from Novo Nordisk Belgium, J&J Belgium and Third-i bvba in the realisation of all elements to this initiative.

Research Partners

Logo of Vrije Universiteit Brussel, featuring the acronym "VUB" in white letters on a blue square, with "Vrije Universiteit Brussel" written to the right in blue text.
The image shows the KU Leuven logo with white text on a dark blue rectangular background and a light blue border on the top and left sides.

Dissemination Partners

Logo of the Belgian Association for the Study of Obesity (BASO), with the letter "O" depicted as a yellow circular brushstroke.
Logo of Obesity Platform Belgium featuring a blue and green abstract circular design next to the text "OPB Obesity Platform Belgium" on a white background.