Dialogue platform

Why the "Dialogue Platform" in the SPRINTT project?


The Dialogue Platform of SPRINTT is a board of external advisors that oversees the project and its progress, and tackles issues that may arise from the different perspectives involved. This advisory board provides advice on the set up and execution of the clinical study, dedicated communication strategies and aims at ensuring that the project adequately meets the needs of patients and caregivers. Topics that require this advisory board's input can be submitted from any of the work packages in the project.

Who sits on the Dialogue Platform?

This advisory board comprises of volunteers with expertise ranging from patient experience to data security from different countries. This opens the platform to the wider input of different perspectives and expectations of different countries and cultures.

All members of this advisory board take part either as individual or represent an organization independent from the SPRINTT consortium organizations. The Dialogue Platform members are called "stakeholders". The stakeholders are grouped as 1) patients, their representatives and informal carers, 2) healthcare providers and scientific experts, 3) ethicists, and 4) experts or officers on data security, privacy, storage and use, and bioinformatics.


Members and tasks

The Dialogue Platform functions as a (para)medical, academic, ethical and patient-driven advisory group for evaluation and guidance on all medical, ethical, patient-related and scientific conduct issues within SPRINTT. Members and organizations were invited based on their European or national representative network or their individual expertise for this study. Representatives of official health and regulatory authorities (RAs) like the European Medicines Agency may join the Dialogue Platform as discussants on topics related to the RAs’ area of work. The Dialogue Platform acts in a collaborative way based on the equality principle and including and respecting all opinions (Universal Declaration of Human Rights). It contributes to providing ethical guidance and balanced opinion on the research carried out in SPRINTT.

The main task of the Dialogue Platform is to discuss the project activities, its progress and outcomes in an open dialogue with the SPRINTT consortium based on the different points of view in order to improve the quality of life of older people suffering from physical frailty and sarcopenia and to achieve acceptance of the study implication (i.e. applying the proposed intervention to older, physically frail people with sarcopenia) by the society and healthcare professionals. A digital discussion platform, ad hoc discussions and annual meetings with all consortium members are contributing to the dialogue.

Members:

  • Patient expert representation (Isabel Saraiva, Portugal)
  • Patient organisation representation (Robert Johnstone, European Patient Forum EPF)
  • Patient organisation representation (Famida Jiwa, Osteoporosis Canada, on behalf of the International Osteoporosis Foundation IOF)
  • Patient expert representation (Dominique Hamerlijnck, The Netherlands)
  • Informal care expert representation (David Evans, UK)
  • Healthcare and public health (Lorenzo Terranova, Federsanità-ANCI, Italy)
  • Physiotherapist and movement sciences (expert, Belgium)
  • Physiotherapist and movement sciences (Martijn Spruit, scientific advisor, CIRO+, The Netherlands)
  • Primary care physicians representation (Ferdinando Petrazzuoli, European General Practice Research Network EGPRN; network within WONCA)
  • Primary care physicians representation (Dutch National Primary Care Physicians Society LHV - frailty group)
  • Primary care physicians representation (Walter Marrocco, Italian National Primary Care Physicians Federation FIMMG)
  • Primary care physician expert (Patrik Midlöv, Lund University, Sweden)
  • Healthcare representation (Judy Stenmark, International Osteoporosis Foundation IOF)
  • Scientific and healthcare representation (Cyrus Cooper, MRC Lifecourse Epidemiology Unit, University of Southampton, Southampton, UK, on behalf of the International Osteoporosis Foundation IOF)
  • Scientific and healthcare representation (Josep Roca, Pulmonology, Hospital Clínic de Barcelona, Barcelona, Spain)
  • Statistics and methodology expert (Silvio Cavuto, IRCCS-Arcispedale Santa Maria Nuova, Reggio Emilia, Italy)
  • Research (bio)ethics and clinical pharmacology expert (Pau Ferrer, Borja Institute of Bioethics, Esplugues de Llobregat, Barcelona, Spain)
  • Research ethics, endocrinology and osteoporosis expert (Marius Kränzlin, Internal Medicine, University of Basel, Switzerland)
  • Research (bio)ethics expert (Antonio Spagnolo, Institute of Bioethics, School of Medicine A. Gemelli, Rome, Italy)
  • ICT, computer security and architecture, (Sofoklis Kyriazakos, Faculty of Engineering and Science, Aalborg University, Denmark)
  • Data protection analyst (Leila El Hadjam, France)
  • Data ethics expert (Bettina Schmietow, UK)
  • Bioinformatics expert (Reinhard Schneider, Luxembourg Centre for Systems Biomedicine, University of Luxembourg, Luxemburg)
  • Regulatory affairs representation (Marina Zemskova, FDA, USA)
  • Regulatory affairs representation (Jean-Marc Guettier, FDA, USA)
  • Managing Coordinator (Pim de Boer, EU-Open)
  • Co-coordination and support (Claire Ignaszewski, EU-Open)

The specific tasks are aimed at:

  • Developing criteria to review documents and progress from patients’ perspectives;
  • Monitoring ethical and scientific conduct of studies and the project as a whole from the different perspectives (for example to suggest solutions for delayed recruitment);
  • Reviewing documents (such as study protocols, patient information and informed consent, the consensus definition of physical frailty and sarcopenia in older people);
  • Providing advice on issues and topics arising in the project for which the consortium needs advice from the different perspectives including HTA;
  • Providing advice on dedicated web texts and dedicated communication strategies (e.g. health literacy plans, dissemination in plain language, and visibility of web text);
  • Pro-actively providing advice on topics related to physical frailty and sarcopenia;
  • Providing a final report on all issues arising from the project that have been dealt with, and the resulting actions.

Our model is exploited based on the “Dialogue Platform model” (weblink: http://www.eu-open.it/the-dialogue-platform-model/?lang=en).

If you have any question about the Dialogue Platform, please contact us via e-mail: pim.deboer@eu-open.it