By ELIZABETH BROWN, CATALYST @ HEALTH 2.0

IN THIS MINI-SERIES, WE WILL BE TAKING A LOOK BACK AT THE IDIH WEEK 2022 USA REGIONAL WORKSHOP, TITLED THE IMPACT OF COVID-19 ON THE SHARED PRIORITIES FOR INTERNATIONAL COOPERATION IN ACTIVE AND HEALTHY AGING, WITH A DIFFERENT BLOG POST DEVOTED TO EACH OF THE THREE COMMON PRIORITIES THAT WERE REFINED THROUGHOUT THE IDIH PROJECT: INTEROPERABILITY BY DESIGN, DATA GOVERNANCE, AND DIGITAL INCLUSION.

INTRODUCTION: THE REGIONAL WORKSHOP PANELISTS AND BACKGROUND OF THE PANEL

For the past three years, Catalyst has been involved in the IDIH Project, which has recently concluded (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 Horizon 2020 Research and Innovation Program – was aimed at fostering cooperation in the field of Digital Health for Active and Healthy Aging (AHA) between the European Union and five Strategic Partner Countries (Canada, China, Japan, South Korea, and USA), especially focusing on four key areas that embrace common priorities of all countries/regions involved: Preventive Care, Integrated Care, Inclusive Living, and Independent and Connected Living. 

Following an expert-driven approach, experienced and renowned experts, executives, and advocacy groups from the six regions (Europe, China, Canada, Japan, South Korea and USA) were brought together by IDIH in a Digital Health Transformation Forum working to define more specific priorities in Digital Health and Ageing, and identifying opportunities for mutual benefit and priorities for international cooperation.  

During IDIH Week 2022, Catalyst ran a Regional Workshop aiming to explore the impacts of COVID-19 on AHA.

Thanks to different perspectives, such as those of start-ups, investors, and the patients themselves, the workshop served to survey a broader range of the relevant R&I landscape in the United States. A Panel Discussion reflected on how the findings of the IDIH Digital Health Transformation Forum around the areas of Interoperability by Design, Data Governance, and Digital Inclusion might be impacted in a post-COVID-19 scenario.

Joining us for the panel (moderated by Catalyst’s own Indu Subaiya and Matthew Holt) were Nancy Finn, Devon McGraw, Iana Simeonov, Dr. Mandy Salomon, and George Demiris.

Nancy Finn is an author, healthcare journalist, educator, and activist who has been at the forefront of how technology can help patients. She’s the author of “e-Patients Live Longer: The Complete Guide to Managing Health Care Using Technology” and “Digital Communication in Medical Practice.” She’s also a member of 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 has been a long-time 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 issues, and has worked for many years in government. She currently is a co-founder and the chief regulatory officer for Ciitizen, a consumer health technology startup, which is now part of Invitae. Previously, she directed US health, privacy and security as the Deputy Director of Health Information Privacy at the Health and Human Services’ Office for Civil Rights and is a Chief Privacy Officer at the Office of the National Coordinator for Health IT. She also directed the Health Privacy Project at the Center for Democracy & Technology for six years and led the privacy and security policy work for the HITECH Health IT Policy Committee. She also served as the 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 across healthcare, life sciences and public health organizations. She also directs and consults on other independent grant funded projects based at PHI. Her areas of expertise include consumer insights, social marketing, branding and communication strategy, and integrating mobile and social media components within public health programs, particularly those focused on low income or at-risk audiences, and her work has her engaging stakeholders, creating value and driving operational efficiency in organizations such as UCSF, Genentech, Continuum Clinical, Jazz Pharmaceuticals, UWG Inc. and the Public Health Institute. Iana serves as an advisor to CAMI Health and the IMPT, providing guidance on strategy and emerging technology.

Dr. Mandy Salomon, PhD., is a specialist in media and gerontology. Her research and subsequent business endeavor, Mentia, for which she is the CEO and Co-Founder, focuses on disrupting psychosocial care for people with dementia and their caregivers, which they do through purposeful and effective digitally-based activities. Dr. Salomon conducted research and completed her Ph.D. at Swinburne University of Technology where she is an industry and research fellow. Her experience extends beyond the classroom as she has an extensive history in creative production including experience as a producer, director, performer, and documentary-maker in radio, television, and print media.

George Demiris, PhD, FACMI, 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 information and technology can play in the healthcare of older adults and their families, and the generation of these innovative personal health solutions in home and hospice care. George is also the chair of the IDIH Expert Group that Catalyst facilitated throughout the IDIH project in the Independent and Connected Living domain.

COMMON PRIORITY ONE: INTEROPERABILITY BY DESIGN

The statement for Interoperability by Design as it relates to digital health and active and health aging, created by the IDIH consortium and focus groups, is as follows: To ensure accessibility, sharing and protection of data from different sources, such as IoT wearables and sensors through the development of international standards, and procedures and incentives for producers accessible by all countries based on an interoperability-by-design approach of digital solutions for preventive and integrated care, independent and inclusive living of the older persons

Current status: The panelists parsed down the above statement into the crux of the matter, which is information blocking (or sharing) without special effort. As Iana Simeonov stated, Interoperability by Design “means being able to access the right kind of data at the right time, and to be able to use that, to actually make a difference in people’s lives. … And if COVID did anything good, it was push this to the fore, so that people actually really understood how critical it was to share data. So it means having open data sets, having standards for data sharing that people really have to adhere to, and generally having a more collaborative atmosphere where we all understand that what we’re trying to do is help people and not just hoard information.”

Obstacles: This idea of “hoarding” information is also where the biggest challenges are seen in order to further the progress of Interoperability by Design”. A recurring theme throughout the conversation was the idea of data being kept in siloes, for instance, as Nancy Finn mentioned, in how electronic health data is (or isn’t) shared across the US or amongst countries. As Dr. Salomon discussed, technology is meant to be a seamless experience such that interoperability is not a concept apparent to the user – the data and tech should be translatable across user groups, without, as Deven McGraw emphasizes, “special effort”. However, there are currently limited to no incentives for businesses holding this data to share, as it is currently seen as proprietary, profit-generating capital. Compounded with the data and privacy laws in the US, it becomes apparent that “this inability to exchange data is rarely actually about lack of technical standards”, but instead more about data and privacy laws, standards, and validation frameworks.

Opportunities: But, as brought up later in the conversation, there is hope – more pocket of data exchange are emerging, and the creation of TEFCA, the Trusted Exchange Framework and Common Agreement, has also been discussed positively with respect to facilitating data exchange. More people are being reached where they are, whether that be in the 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 ample need for access, outreach, and infrastructure, so that these populations “left behind” can have the same opportunities and access to these innovations as others. Lastly, the importance of including the caregiver in these conversations was identified as critical. By educating the caregivers, they are equipped with better support and are able to then better help their patients by facilitating better understanding of their condition and resources available to them.

PLEASE KEEP AN EYE OUT FOR THE MINI SERIES’ NEXT BLOG POST, EXPLORING THE RESULTS OF THE REGIONAL WORKSHOP AROUND DATA GOVERNANCE!

Elizabeth Brown is a Project Manager at CATALYST @ HEALTH 2.0