Digital Health and Patient Data

Patients with unmet needs will continue to increase as no viable nor adequate treatment exists. Meanwhile, healthcare systems are struggling to cope with the rise of patients with chronic diseases, the ageing population and the increasing cost of drugs. What if there is a faster and less expensive way to provide better care for patients using the right digital solutions and transforming the growing volumes of health data into insights? The increase of digital health has grown exponentially in the last few years. Why is there a slow uptake of these new digital solutions in the healthcare and pharmaceutical industries? One of the key reasons is that patients are often left out of the innovation process. Their data are used without their knowledge, solutions designed for them are developed without their input and healthcare professionals refuse their expertise. This book explores what it means to empower patients in a digital world and how this empowerment will bridge the gap between science, technology and patients. All these components need to co-exist to bring value not only to the patients themselves but to improve the healthcare ecosystem. Patients have taken matters into their own hands. Some are equipped with the latest wearables and applications, engaged in improving their health using data, empowered to make informed decisions and ultimately are experts in their disease(s). They are the e-patients. The other side of the spectrum are patients with minimal digital literacy but equally willing to donate their data for the purpose of research. Finding the right balance when using digital health solutions becomes as critical as the need to develop a disease-specific solution. For the first time, the authors look at healthcare and technologies through the lens of patients and physicians via surveys and interviews in order to understand their perspective on digital health, analyse the benefits for them, explore how they can actively engage in the innovation process, and identify the threats and opportunities the large volumes of data create by digitizing healthcare. Are patients truly ready to know everything about their health? What is the value of their data? How can other stakeholders join the patient empowerment movement? This unique perspective will help us re-design the future of healthcare - an industry in desperate need for a change.

Anca Petre, PhD, is a digital health entrepreneur passionate about the impact of emerging technologies in healthcare. She is the co-founder of 23 Consulting, a Paris-based firm known for detecting the latest tech trends in healthcare. She is also a podcast producer at MedShake, where she gives patients and health professionals a platform to tell their stories. Anca is also an advisor for health tech startups such as SUN, a dynamic and engaged young patients' community. Anca completed a double degree in pharmaceutical sciences at Université Paris-Saclay and management at INSEEC Business School. During her PhD, she specialized in the use of blockchain technology in the healthcare industry. In her work as an international thought leader, she is focused on bringing new technologies to the health industry and involve patients in the digital innovation process. As a TEDx speaker, she travels the world to give inspiring and impactful talks that raise awareness about tomorrow's health system and instill change. Disa Lee Choun has years of experience working in technology and innovation especially in the pharmaceutical industry. She is the co-founder of RND Synergy LTD providing consultancy to start-up companies in life sciences and technology. She was also an advisor to a non-profit organisation bringing Clinical Trials to Africa and other volunteering work. Prior to joining the pharma, she was a co-founder of an IT company. Disa has an EMBA in Pharmaceutical Business from the University of the Sciences in Philadelphia and Licentiate and B.S. in Pharmaceutical Chemistry from Universidad del Valle de Guatemala. In 2017, Disa started a consortium, a cross-industry collaboration on blockchain via PhUSE. Through her work in emerging technology and digital transformation, she was awarded Top 100 Women in Technology, Financial Times top 100 most influential BAME Leader, and featured on the cover of CIO Look celebrating Women in Tech 2019. Her passion is on closing the gap for patients with unmet needs by converging science with the right digital solution(s).

Chapter 1: The patient empowerment movement Chapter 2: Patient data ownership Chapter 3: From raw data to insights Chapter 4: Applications of health data Chapter 5: Foundation of Patient-driven digital health systems Chapter 6: Afterword: Future 20-50 years, what healthcare would look like

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