Studies, scientific publications, and innovative projects: Carenity is committed to advocating for patients
Published Sep 6, 2019 • Updated Sep 17, 2019 • By Louise Bollecker
Have you ever heard of Data for Good? Sharing your medical data online may be a good way to help medical research in a secure and anonymous way. Lise Radoszycki is Associate Director of Carenity. She coordinates the production of studies to carry the patient's voice to the health sector. Convinced that patients should be actors of their care, she explains the role of Carenity as a toolbox for patients.
Hi Lise, what topics do the studies done by Carenity cover?
The topics covered in Carenity studies vary greatly, but six research topics can be distinguished:
Quality of life
The objective of these studies is to understand the impact a disease or symptom has on the daily life of patients. For example, we recently conducted a survey of the impact of gait (walking) difficulties and impairments on the quality of life of members with multiple sclerosis. We are also interested in the issue of "health value", that is, the definition of what is most important for patients in terms of treating their pathology. For these quality-of-life studies, we use questionnaires developed by our team of analysts and scientifically validated measurement scales, the PROs ( Patient-Reported Outcome, or result provided by the patient).
The health system and its policies
The objective of these studies is to better understand a patient's experience with their medical care and protocol for the condition. These studies address in particular the problem of delays in diagnosis* and the diagnosis experience; patients' medical care path/route and important moments within the medical care, such as when the patient enters or leaves the hospital; and patients' opinions of health professionals, their care, attention, etc.
* Editors Note: Delays in diagnosis is the period between when an individual first experiences symptoms and receives the diagnosis.
Tools and services intended for patients and their families
With these studies our goal is to understand the opinion of patients and caregivers on the usefulness and benefits of patient-intended tools and services and to improve and build upon them: new and enhanced services, support programs, mobile applications, and websites and other forms of media to help patients better understand and manage their condition and treatment.
Some examples are Patient Support Programs (PSP) and therapeutic patient care and education programs that are carried out in the hospital.
With these studies, Carenity seeks to understand patients' preference for treatments and future treatments (frequency, strength, administration method, risk vs benefit, etc.). The patients' opinion on medication side effects and methods of administration can also help understand how such things can impact an individuals' consistency with taking the medication. Finally, these studies may assist in identifying difficulties in the access to medications, therapeutic interventions, and in the management of symptoms and side effects of treatments.
These studies allow us to inquire into the protocols of future clinical trials to identify the limitations perceived by patients (distance from the research center, economic costs, frequency of medical examinations, etc.) and to identify how those limitations could be mitigated through offering additional services (home care nurses, access to telephones/email, information on the results of the study, etc ...).
Additionally, sometimes, we can also optimize participation in clinical trials by making potentially eligible individuals aware of them.
The society issues
These studies focus on the problems that directly affect Carenity members as a result from their chronic conditions, such as isolation, chronic fatigue, adverse impact on professional life, and the right to an assisted end of life. We conduct international surveys on these social issues so that all members can express themselves. The results are shared with the entire community in the form of articles written by Louise-B and available in the Health Magazine.
It should also be remembered that all these studies are often built with members of Carenity. We propose to some patients or relatives of patients registered with Carenity to read the questionnaire to avoid neglecting any problems and to take into account the reality experienced by the members. All these studies hold in common that the patient is at the center of the analysis. At Carenity we are convinced of the merits of patient centricity.
Can you explain what is patient centricity?
It is a patient-centered approach that aims to recognize the patient as the main actor in their health care. The idea of patient centricity affects the entire care process and health care protocol; the patient must be included in every step concerning him or her. The patient must be able to be in the position to take control of his health. The patient's and his or her family's needs, wants, pain and desires must be taken into account.
Patient centricity is becoming increasingly present among health care participants, particularly with drug manufacturers, who are trying to develop a care offer that is more in line with patient expectations. Carenity works with and assists all health care participants better understand and account for the opinions and feelings of patients through surveys without the doctor's filter. It is really a virtuous circle based on a collaborative approach, in which patients express their needs so that all stakeholders can improve the provision of care and their quality of life.
Who are the health care actors that Carenity works with?
We work with all actors in the health system: pharmaceutical companies, medical device manufacturers, doctors, academic researchers, health economists and, finally, with patient associations. Carenity is a true patient centricity toolkit for all of these health care participants.
What is Carenity's link with patient associations?
We regularly present patient associations to our members. For example, broadcasting an event organized by one of the patient associations in the forum. We also carry out studies in collaboration with them. We have worked with many patient associations since our inception, and it is always a real pleasure because we share the common goal of helping to improve the daily life of individuals with chronic conditions. If you represent a patient association and are reading this, please do not hesitate to write to us and introduce yourself - at email@example.com
Can you tell us more about Carenity as an actor in the scientific community, involved in research?
We work hand in hand with the members of our scientific committee to reflect on the main health issues impacting us tomorrow. Our scientific committee is composed of numerous doctors and researchers, each of whom is inspired by Carenity members, ensuring that their work has a tangible positive impact on the lives of patients.
Since the creation of Carenity, we have published 8 scientific publications and no less than 32 posters to life make the voices of patients heard. Our research activity continues to grow! For September 2019, approximately 10 articles and 11 posters are being composed.
We are present in several of the main international medical congresses. For example, you can find Carenity at ECTRIMS, a congress dedicated to multiple sclerosis held in Stockholm and, in Barcelona, at the EASD dedicated to diabetes and the ESMO dedicated to oncology.
Carenity was a candidate for the Health Data Hub of the French Ministry of Health, what is the status of this project?
This is a project of the French Ministry of Health that aims to create a safe public platform. The objective of this innovative platform is to share different sources of health data to be able to analyze them using artificial intelligence algorithms in a safe and ethical framework. This work could help health professionals make decisions in the personal context of the patient; develop virtual clinical trials; and follow the real and long-term impact of diagnostic innovations, therapeutic innovations, and drug interactions with prescription medications.
We responded to the first call, at the beginning of 2019, to co-build the first version of the platform, in collaboration with researchers from IRDES and HOSPINNOMICS. The objective of the project we proposed is to carry out a joint analysis of the data generated through Carenity on the lifestyle and levels of physical activity and the data of the French Health Insurance Database (SNIIRAM) on the consumption of health care (medications, medical consultations, etc.). This will allow for assessment of the impact of prescriptions and reimbursement of physical activity.
Unfortunately, we have not been selected for this first phase, but we will continue working on this beautiful project and propose new areas of research for the next calls for Health Data Hub projects.
As Associate Director, what direction would you hope Carenity takes in the coming years?
From the point of view of our studies, we will continue to internationalize. Since 2019, we have participated in international research projects in new countries and continents such as Japan, Eastern Europe and the Nordic countries. I also believe that we will carry out more and more research projects on data generated through Carenity together with other external data sources., such as a connected object (for example, a pedometer), a connected medical device (for example, a blood glucose meter) or other databases such as the French Health Insurance. Thanks to these multi-source studies, we can better define the patient's needs: beyond the answers at any given time in a questionnaire, we will have a broader view of their daily lives.
From the point of view of the functionalities of Carenity's platform, I hope for us to continue to offer more and more services to Carenity members so that they can better manage their condition on a daily basis and improve their daily life. The Carenity team is currently reflecting on implementing coaching and health monitoring tools on the Carenity platform, allowing members to better track their health.
Thanks to Lise for taking the time to answer our questions.
Were you familiar with all the works and processes of Carenity? What are your thoughts?