Tono Tombas Grant
On the Participation of Patients in Improving the Impact
of Chronic Kidney Disease on Their Daily Lives
1st Tono Tombas Grant
The quality of healthcare is based on the safety and effectiveness of medical services, but over the last ten years, a third pillar has been added to the definition of quality: the concept of value. The value of healthcare is defined by the recipient, not the provider. It refers to the entire care process, not just the quality of isolated procedures. Ultimately, increasing value is achieved by identifying unmet needs and eliminating elements that do not contribute value (sustainability).
It is evident that improving the value of healthcare requires the involvement from the start of those who will receive the service. From a technical paradigm that operated with the mindset of “everything for the patient, but without the patient,” a new paradigm emerges where the patient says, “nothing about me without me.”
MOTIVATION
On November 28, 2023, Tono Tombas passed away at the age of 61. He lived with advanced kidney disease since the 1980s, including periods of dialysis and multiple transplants. He worked tirelessly to improve the care process for patients with advanced kidney disease. His activities across various fields were always focused on unmet needs and opportunities for improvement. Tono Tombas had a comprehensive view of the problem, recognizing all involved parties: patients, donors, and all healthcare professionals. Within this boundless generosity, his model promoted collaboration between patients and professionals (insisting that patients should be team members). Opening doors and fostering collaboration were his strategies for achieving practical results.
Tono Tombas always emphasized that, in addition to “curing,” it was very important to consider the concerns, feelings, and needs of patients with advanced kidney disease. Scientific excellence must be accompanied by a respectful and empathetic approach in the patient-professional relationship.
Friends and family, following Tono Tombas’s legacy, are promoting the 1st Tono Tombas Grant to encourage research aimed at improving the care and quality of life for patients with advanced kidney disease. This scholarship supports projects that are carried out in collaboration with clinicians and involve the direct participation of patients and caregivers.
Project Development
In keeping with the spirit of the Tono Tombas Grant, the first step has been to consult a group of patients to identify areas of thematic interest.
The Patient Experience Observatory at the Clínic Hospital, in collaboration with ADER, convened a focus group with patients with advanced chronic kidney disease on July 2, 2024, to conduct a co-creation workshop with the aim of:
- Identifying unmet needs of patients with advanced kidney disease.
- Based on the general framework of needs, making an initial approach to specific aspects that, in the current context, require evaluating potential improvements in the care process.
- Proposing three research areas to the Scientific Committee.
The full report of the focus group with patients is accessible here.
The results of this focus group have been communicated to the Scientific Committee.
Scientific Committee
The Scientific Committee is composed of patients and professionals in the field of advanced chronic kidney disease, as well as the family of Mr. Tono Tombas (in alphabetical order):
- Jesus Alcober (ADER)
- Javier Altemir (ADER)
- Joan Escarrabill (Observatori de l’Experiència de Pacients de l’Hospital Clínic, serving as the secretary)
- Edoardo Melilli (Societat Catalana de Trasplantament)
- Laia Sans (Societat Catalana de Nefrologia)
- And for Mr. Miquel Suqué and the family of Tono Tombas.
The Scientific Committee will receive the proposal from the patients who participated in the co-creation workshop and will decide on the research question for the call.
Objective
The objective of the Tono Tombas Grant is to promote research to improve the care process for chronic kidney disease through patient involvement, both in defining the general research proposal and in the design and implementation of research projects.
After analyzing the patients’ proposals and following the corresponding discussion, the following title is proposed for the 2024 call of the Tono Tombas Grant: “Patient Participation in Improving the Impact of Chronic Kidney Disease on Daily Life.”
The projects will be developed over a period of two years, starting from the announcement of the call results.
The Tono Tombas Grant will have a funding amount of €60,000, which will be allocated to a research project to cover expenses related to personnel, travel and transportation, fieldwork costs, consumables, and communication of results.
Applicants
The call for proposals is open to multidisciplinary research teams with a principal investigator (PI) who have a formal affiliation with public health centers in Catalonia or with service providers funded by CatSalut. The PI can be either a healthcare professional or a patient with chronic kidney disease.
The research team must always include patients with chronic kidney disease, in addition to healthcare professionals. The healthcare professionals within the multidisciplinary team should be able to make relevant contributions to the research question, based on their area of expertise.
Cooperation between different healthcare settings will be viewed favorably.
Submission of Applications
The application must include the following documentation:
Research Project aaaa
The research project must meet the following characteristics:
- They must be centered around the research question defined by the Scientific Committee, which is the title of the call.
- The final goal of the projects must be to evaluate interventions that improve the care process and quality of life for patients with advanced kidney disease and/or kidney transplant recipients.
- It must be explicitly clear how patients are involved from the beginning, both in the design of the project and in the evaluation of results.
The application deadline will be 60 days after the publication of the call.
All documentation must be submitted electronically to: becatonotombas@fmcb.cat
The Fundació Món Clínic will handle the administrative management of the entire process of evaluation and selection of proposals.
Title of the Research Project
Description of the Research Team
Description of the role of the participating patients
Personal details and curriculum vitae of each participant.
Include personal information and professional experience of the participants.
Report from the Clinical Research Ethics Committee (CEIC)
Evaluate the ethical adequacy of the research project.
Justification of the budget and necessary resources
Explain the reasons for and distribution of costs and resources required to conduct the study.
Evaluation Procedure
The Scientific Committee will evaluate the proposals based on the following basic criteria:
A
Relevance of the project in relation to the research question and its potential impact on improving the care process.
B
Degree of patient participation in the project.
C
Outputs related to the project (such as training plans or evaluation tools) that facilitate the scalability of the experience to other healthcare settings.
Evaluation Criteria
The evaluation process will be conducted from three perspectives: the Catalan Society of Nephrology, the Catalan Society of Transplantation, and patients (ADER + Patient Experience Observatory). Each of the three evaluations will represent one-third of the overall assessment.
Aquests son els Criteris d’avaluació que faran servir la Societat Catalana de Nefrologia i la Societat Catalana de Trasplantament (aquests criteris s’han consensuat amb ambdues entitats)
Resolution, Formalization, and Follow-up
The winner must sign the acceptance commitment within 15 days of the formal notification. The commitment must include the milestones and deliverables of the reports:
- 6 months: Initial project report.
- 18 months: Project development report.
- 24 months: Final report.
La gestió de la convocatòria es farà a través de la Fundació Mon Clínic.
- 25% at the start of the project
- 25% at 6 months (subject to the evaluation of the Initial Project Report)
- 50% at 18 months (subject to the evaluation of the Project Development Report)
Communication of Results
Public Announcement of the Results of the Latest Call
Progress of the Ongoing Research Project
Results of the Completed Project that has Fulfilled the Two Years of Research
The results of the project that has completed the two years of research will be presented, with an emphasis on the impact it has had on patients’ lives.
Collaborators:
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