If patient centricity is truly your most important objective, you need to consider what is really impacting patient’s life.
What is the most surprising challenge you faced while developing patient-focused endpoints & patient-reported outcomes?
Last year I was waiting in the patient’s room in one of the European Multiple Sclerosis (MS) centre of excellence. When one young patient with MS finished her consultation with the MS medical expert, and returned back to the waiting room she was very disappointed. She commented to other patients: “The doctor said that the experimental medicine is working because the MRI was ok, no new lesions, therefore, good news. But I am not happy because last weekend I could not attend my sister’s wedding, I feel destroyed, I have fatigue and I am a bit depressed” the lady said.
What is relevant for the clinician is not always relevant for patients, if we really want to develop a patient-focused endpoints, it is key to ask the patients what is relevant for them. Most of the trial endpoints are chosen for the clinical teams focused on objective efficacy and safety endpoints. Would be nice to consider outcomes that have direct impact on patient’s social life, productivity, fatigue, anxiety, depression.
How are you maintaining the relevance of trial data? Is there a reliable way to do so?
It is important to develop trials with outcomes connected to the real clinical practice and with the patient’s needs, sometime we have high academics trails not directly relevant for the patient diary life. Why not involve patients in the trial design and discuss with them the study outcomes and the potential implementation in the Heath Care Systems of the trial outcomes. A relevant trial contributes to leverage the patient ECOSYSTEM.
What has proven to be successful in building patient-centric culture in companies?
It is key to be convinced about the added value of the company’s actions for patients, pharma companies have a social responsibility to contribute to bringing solutions to the Heath Care Systems and develop initiatives in partnerships with the patient’s community are the key success factors.
Dr. Rainel SANCHEZ-DE LA ROSA is a Region Europe Medical Head Neuroscience at Novartis Pharma. He is an experienced and flexible Medical Doctor (MD and PhD) board certificated in Internal Medicine working from 1998 in different Clinical Operations & Medical Affairs positions at big pharma companies (local & regional), able to generate innovation and value for patients and Heath Care Ecosystems. He has delivered background in early launch & market brand innovative products: Neurology, virology, oncology, respiratory, women’s health on different business environment: life-cycle management, co-marketing, co-promotion, licensing, multichannel and field based medical roles. Furthermore preclinical experience in gene therapy as investigator. He managed Heath Economic Outcome Research (HEOR), Real World Evidence (RWE), Market Access and Patient Relate Outcome (PRO) experience with more than 25 publications in pharmaeconomics & PRO at medical specialised journals. He is accredited as university professor with experience in health sciences, and post-graduate medical education. At this time he is part of the Novartis Pharma European Medical Leadership Team, he is working as Medical Executive Director based in Novartis HQ.