By ELIZABETH BROWN, CATALYST @ HEALTH 2.0
IN THIS MINI-SERIES WE LOOK BACK TO THE IDIH WEEK 2022 USA REGIONAL WORKSHOP, TITLE THE IMPACT OF COVID-19 ON THE SHARED PRIORITIES FOR INTERNATIONAL COOPERATION IN ACTIVE AND HEALTHY AGINGWITH A DIFFERENT BLOG POST DEDICATED TO EACH OF THE THREE COMMON PRIORITIES REFINED THROUGHOUT THE IDIH PROJECT: INTEROPERABILITY THROUGH DESIGN, DATA GOVERNANCE AND DIGITAL RECORDING.
INTRODUCTION: THE REGIONAL WORKSHOP PANELISTS AND BACKGROUND TO THE PANEL
For the past three years, Catalyst has been involved in the IDIH project, which has recently been completed (you can read more about the overall project findings here). IDIH (International Digital Health Cooperation for Preventive, Integrated, Independent and Inclusive Living) – funded under the European Union’s Horizon 2020 Research and Innovation Program – aimed to promote cooperation on Digital Health for Active and Healthy Aging (AHA) between the European Union and five strategic partner countries (Canada, China, Japan, South Korea and the US), focusing in particular on four key areas that encompass common priorities of all countries/regions involved: Preventive care, integrated care, inclusive living and independent and connected living.
Following an expert-led approach, experienced and renowned experts, executives and advocacy groups from the six regions (Europe, China, Canada, Japan, South Korea and the US) were brought together by IDIH in a Digital Health Transformation Forum that worked to define more specific priorities in digital health and aging, and identifying opportunities for mutual benefit and priorities for international cooperation.
During IDIH Week 2022, Catalyst hosted a regional workshop to explore the effects of COVID-19 on AHA.
Thanks to different perspectives, such as those of start-ups, investors and the patients themselves, the workshop served to oversee a wider range of the relevant R&I landscape in the United States. A panel discussion focused on how the IDIH Digital Health Transformation Forum findings on interoperability through design, data governance and digital inclusion can be impacted in a post-COVID-19 scenario.
Join the panel (moderated by Catalyst’s own) Indu Subaiya and Matthew Holt) goods Nancy Finno, Devon McGraw, Iana Simeonov, dr. Mandy Salomonand George Demiris.
Nancy Finno is an author, healthcare journalist, educator, and activist who has pioneered how technology can help patients. She is the author of “e-Patients Live Longer: The Complete Guide to Managing Health Care Using Technology” and “Digital Communication in Medical Practice”. She also serves on the board of directors and the Consumer Health Council for Massachusetts Health Quality Partners. She is a member of the Association of Healthcare Journalists and the National Writers Union. She is a longtime member of the Massachusetts Technology Leadership Council and the National Association of Professional Women, and is an active member of the Right Care Alliance (RCA) Leadership Team. Nancy is also a former secretary and board member of the Society for Participatory Medicine (SPM).
Devon McGraw, MPH, is one of the nation’s leading experts in healthcare, data governance, privacy and interoperability, and has spent many years in government. She is currently the co-founder and the Chief Regulatory Officer of Ciitizen, a consumer health technology startup, which is now part of Invitae. Previously, she led U.S. Health, Privacy and Security as the Deputy Director of Health Information Privacy in the Health and Human Services’ Office for Civil Rights and is Chief Privacy Officer in the Office of the National Coordinator for Health IT. She also led the Health Privacy Project at the Center for Democracy & Technology for six years and led privacy and security policy for the HITECH Health IT Policy Committee. She also served as chief operating officer of the National Partnership for Women and Families.
Iana Simeonov is an innovation consultant and digital health strategist focused on building the entrepreneurial and technical capacity of healthcare, life sciences and public health organizations. She also directs and advises on other independent grant-funded projects based on PHI. Her areas of expertise include consumer insights, social marketing, brand and communications strategy, and integrating mobile and social media components into public health programs, especially those targeting low-income or high-risk groups, and her work has engaged her stakeholders, delivering value. created and driving operational efficiencies in organizations such as UCSF, Genentech, Continuum Clinical, Jazz Pharmaceuticals, UWG Inc. and the Public Health Institute. Iana is an advisor to CAMI Health and the IMPT and advises on strategy and emerging technology.
dr. Mandy Salomon, PhD., is a specialist in media and gerontology. Her research and subsequent business endeavors, Mentia, of which she is the CEO and co-founder, focuses on disrupting psychosocial care for people with dementia and their caregivers, which they do through targeted and effective digital activities. dr. Salomon did research and completed her Ph.D. at Swinburne University of Technology, where she is an industry and research associate. Her experience extends beyond the classroom as she has an extensive history in creative production, including experience as a producer, director, performer and documentary filmmaker for radio, television and print media.
George Demiris, PhD, FACMIA, is a Penn Integrates Knowledge University Professor, Department of Biobehavioral Health Sciences, School of Nursing & Department of Biostatistics, Epidemiology and Informatics, Perelman School of Medicine at the University of Pennsylvania. He is a Fellow of the American College of Medical Informatics and the Gerontological Society of America. His research focuses on the transformative role that information and technology can play in the healthcare of older adults and their families, and the generation of these innovative personalized health solutions in home and hospice care. George is also the chairman of the IDIH Expert Group that facilitated Catalyst during the IDIH project in the domain of Independent and Connected Living.
COMMON PRIORITY ONE: INTEROPERABILITY BY DESIGN
The statement for Interoperability by Design on Digital Health and Active and Healthy Aging, prepared by the IDIH Consortium and Focus Groups, reads as follows: accessibility, sharing and protection of data from different sourceslike IoT wearables and sensors by the development of international standardsand procedures and incentives for producers accessible to all countries on the basis of a interoperability-by-design approach of digital solutions for preventive and integrated care, independent and inclusive life of the elderly
Current status: The panelists have broken the above statement down to the heart of the matter, which is to block (or share) information without special effort. As Iana Simeonov put it, interoperability by design means “accessing the right kind of data at the right time, and being able to use it to make a real difference in people’s lives. … And if COVID did any good, it was bringing it to the fore so people really understood the importance of sharing data. So it means we have open datasets, have data sharing standards that people really need to adhere to, and generally have a more collaborative atmosphere where we all understand that we’re trying to help people and not just hoard information.”
Obstacles: This idea of ”hoarding” information is also where the biggest challenges are seen to advance the progress of Interoperability by Design.” A recurring theme in the conversation was the idea of data being kept in silos, as Nancy Finn mentioned. , in how electronic health data is shared (or not) in the US or between countries.As Dr. Salomon discussed, technology is intended to be a seamless experience, so interoperability is not a concept that is clear to the user – the data and technology must be translatable between user groups, with no, as Deven McGraw emphasizes, “special effort.” However, there are currently limited to no incentives for companies that own this data to share, as it is currently viewed as proprietary, profit-generating capital. – and privacy laws in the US, it is becoming clear that “this inability to exchange data actually rarely concerns me t lack of technical standards”, but more with data and privacy laws, standards and validation frameworks.
Possibilities: But, as brought up later in the conversation, there is hope – more data sharing is coming, and the establishment of TEFCA, the Trusted Exchange Framework and Common Agreement, has also been discussed positively regarding facilitating data sharing . More people are being reached where they are, whether that be at home, a clinical setting or various other facilities. There is still a gap in access, as mentioned by Nancy Finn, and so there is still sufficient need for access, reach and infrastructure so that these ‘left behind’ populations can have the same opportunities and access to these innovations as others. Finally, the importance of involving the caregiver in these conversations was identified as crucial. By educating the caregivers, they receive better support and can better help their patients by gaining a better understanding of their condition and the resources available to them.
VIEW THE NEXT MINI SERIES BLOG, DISCOVER THE RESULTS OF THE REGIONAL DATA GOVERNANCE WORKSHOP!
Elizabeth Brown is a project manager at CATALYST @ HEALTH 2.0