A l’origine, il existe une invitation. Patient partenaire, patient expert. De l’accompagnement à l’autonomie

Hugues Lefort; Thérèse Psiuk

doi:10.3917/heg.093.0239a

Challenges of putting the patient expert approach into action

Diabetologie und Stoffwechsel ◽

10.1055/s-0034-1375109 ◽

2014 ◽

Vol 9 (S 01) ◽

Author(s):

KM Zinken ◽

A Fasulo ◽

J Zinken

Keyword(s):

Patient Expert

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Patient partenaire, patient expert. De l’accompagnement à l’autonomie

Hegel ◽

10.3917/heg.093.0287 ◽

2019 ◽

Vol N° 3 (3) ◽

pp. 287

Keyword(s):

Patient Expert

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L’essor du patient expert au service d’une démocratie en santé

Revue française des affaires sociales ◽

10.3917/rfas.171.0143 ◽

2017 ◽

Vol 1 (1) ◽

pp. 143

Author(s):

Claire Compagnon ◽

Marianne Berthod-Wurmser ◽

Frédéric Bousquet

Keyword(s):

Patient Expert

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Le soignant face au patient expert

L Aide-Soignante ◽

10.1016/j.aidsoi.2019.04.004 ◽

2019 ◽

Vol 33 (208) ◽

pp. 16-18

Author(s):

Marion Chirio-Espitalier ◽

Anne-Eva Libert

Keyword(s):

Patient Expert

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To the Analysis of Correlations Between Clinical Manifestations, Postmortem Pathomorphological and Biochemical Changes in Patients with Polytrauma

Journal of Anatomy and Histopathology ◽

10.18499/2225-7357-2018-7-2-50-57 ◽

2018 ◽

Vol 7 (2) ◽

pp. 50-57

Author(s):

D. M. Naletova ◽

K. D. Belyanskiy

Keyword(s):

Clinical Course ◽

Clinical Manifestations ◽

Medical Documentation ◽

Mechanical Trauma ◽

Clinical Complications ◽

Archival Documents ◽

Post Traumatic ◽

Patient Expert ◽

The Relationship

The aim of this work was to establish the relationship between the clinical course of polytrauma in persons who died in medical organizations in a relatively remote posttraumatic period with pathomorphological changes in internal organs and postmortal biochemical shifts. Material and methods. The article presents the results of the analysis of 140 cases of death affected with mechanical trauma in the second and third periods of traumatic disease, including the studying of documented material (original medical card hospital patient, expert archival documents), personal conduct expert studies, holding tanatogenesis analysis, evaluation of results of autopsy, postmortem histological and biochemical studies and their comparison with the clinical data described in the medical records. Results. According to the results of the study, it was found that regardless of the terms of hospitalization in the post-traumatic period exceeding 3 days, the results of various “posthumous” studies (the corpse, its organs, tissues and fluids) actually reflect the final traumatic disease of the corresponding period of hospitalization, are not strictly specific, so often do not allow to speak about a specific nosological unit that led to the development of fatal complications. More such studies provide an opportunity to confirm or deny the presence of the described clinical complications premortal period, to determine the tanatogenesis (mechanism of death) and its compliance with the “picture” of dying. Therefore, information from medical documentation about the clinical course of polytrauma, its manifestations and complications, confirmed by in vivo laboratory methods of research and methods of radiation diagnosis, with their proper expert evaluation, are of fundamental diagnostic importance for the scientifically grounded and objective establishment of the main (original) cause of death, developed tanatogenetically significant complications and their relationship with the injury.

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Patient empowerment and access to medicines: Insights from a scientist-patient suffering from erythropoietic protoporphyria

Medicine Access Point of Care ◽

10.1177/2399202619865167 ◽

2019 ◽

Vol 3 ◽

pp. 239920261986516 ◽

Cited By ~ 1

Author(s):

Jasmin Barman-Aksözen

Keyword(s):

Patient Empowerment ◽

Rare Condition ◽

Access To Medicines ◽

Regulatory Agencies ◽

The European Union ◽

Erythropoietic Protoporphyria ◽

Personal Experiences ◽

National Patient ◽

Patient Expert ◽

National Competent Authorities

Patient representation during the evaluation of medicines by key decision makers such as regulatory agencies, Health Technology Assessment bodies, and healthcare payers is increasingly considered to add value to the appraisals and empowers patients, which means that they gain a more powerful voice over decisions and actions affecting their own health. As I myself suffer from the ultra-rare condition erythropoietic protoporphyria (EPP), I have participated as a patient expert in several discussions on access to afamelanotide, which currently is the only treatment for EPP and was approved in the European Union (EU) in 2014. As a molecular biologist with a PhD in EPP research, I consider myself having the necessary requirements to meaningfully contribute to such assessments. In this article, I share my personal experiences with regard to the discussions on access in Germany and England at the respective national competent authorities, the Federal Joint Committee, and the National Institute for Health and Care Excellence, respectively. In addition, I discuss the insights of the International Porphyria Patient Network, a group of highly empowered EPP patients effectively supporting national patient communities in their efforts to enable access to the afamelanotide treatment in their countries.

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