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 previous three years, Catalyst has been concerned within the IDIH Challenge, which has not too long ago concluded (you possibly can learn extra in regards to the general undertaking findings right here). IDIH (Worldwide Digital Well being Cooperation for Preventive, Built-in, Unbiased and Inclusive Dwelling) – funded beneath the European Union Horizon 2020 Analysis and Innovation Program – was geared toward fostering cooperation within the subject of Digital Well being for Energetic and Wholesome Ageing (AHA) between the European Union and 5 Strategic Associate Nations (Canada, China, Japan, South Korea, and USA), particularly specializing in 4 key areas that embrace widespread priorities of all international locations/areas concerned: Preventive Care, Built-in Care, Inclusive Dwelling, and Unbiased and Related Dwelling.
Following an expert-driven strategy, skilled and famend consultants, executives, and advocacy teams from the six areas (Europe, China, Canada, Japan, South Korea and USA) have been introduced collectively by IDIH in a Digital Well being Transformation Discussion board working to outline extra particular priorities in Digital Well being and Ageing, and figuring out alternatives for mutual profit and priorities for worldwide cooperation.
Throughout IDIH Week 2022, Catalyst ran a Regional Workshop aiming to discover the impacts of COVID-19 on AHA.
Because of totally different views, equivalent to these of start-ups, buyers, and the sufferers themselves, the workshop served to survey a broader vary of the related R&I panorama in the US. A Panel Dialogue mirrored on how the findings of the IDIH Digital Well being Transformation Discussion board across the areas of Interoperability by Design, Knowledge Governance, and Digital Inclusion is perhaps impacted in a post-COVID-19 situation.
Becoming a member of us for the panel (moderated by Catalyst’s personal Indu Subaiya and Matthew Holt) have been Nancy Finn, Devon McGraw, Iana Simeonov, Dr. Mandy Salomon, and George Demiris.
Nancy Finn is an writer, healthcare journalist, educator, and activist who has been on the forefront of how expertise may help sufferers. She’s the writer of “e-Sufferers Dwell Longer: The Full Information to Managing Well being Care Utilizing Know-how” and “Digital Communication in Medical Observe.” She’s additionally a member of the board of administrators and the Shopper Well being Council for Massachusetts Well being High quality Companions. She is a member of the Affiliation of Healthcare Journalists and the Nationwide Writers Union. She has been a long-time member of the Massachusetts Know-how Management Council, and the Nationwide Affiliation of Skilled Girls, and is an lively member of the Proper Care Alliance (RCA) Management Staff. Nancy can also be a former Secretary and board member of the Society for Participatory Drugs (SPM).
Devon McGraw, MPH, is without doubt one of the nation’s main consultants in healthcare, information governance, privateness, and interoperability points, and has labored for a few years in authorities. She at the moment is a co-founder and the chief regulatory officer for Ciitizen, a shopper well being expertise startup, which is now a part of Invitae. Beforehand, she directed US well being, privateness and safety because the Deputy Director of Well being Data Privateness on the Well being and Human Providers’ Workplace for Civil Rights and is a Chief Privateness Officer on the Workplace of the Nationwide Coordinator for Well being IT. She additionally directed the Well being Privateness Challenge on the Heart for Democracy & Know-how for six years and led the privateness and safety coverage work for the HITECH Well being IT Coverage Committee. She additionally served because the chief working officer of the Nationwide Partnership for Girls and Households.
Iana Simeonov is an innovation advisor and digital well being strategist centered on constructing the entrepreneurial and technical capability throughout healthcare, life sciences and public well being organizations. She additionally directs and consults on different impartial grant funded initiatives primarily based at PHI. Her areas of experience embody shopper insights, social advertising, branding and communication technique, and integrating cellular and social media elements inside public well being applications, notably these centered on low earnings or at-risk audiences, and her work has her participating stakeholders, creating worth and driving operational effectivity in organizations equivalent to UCSF, Genentech, Continuum Medical, Jazz Prescription drugs, UWG Inc. and the Public Well being Institute. Iana serves as an advisor to CAMI Well being and the IMPT, offering steerage on technique and rising expertise.
Dr. Mandy Salomon, PhD., is a specialist in media and gerontology. Her analysis and subsequent enterprise endeavor, Mentia, for which she is the CEO and Co-Founder, focuses on disrupting psychosocial take care of individuals with dementia and their caregivers, which they do by purposeful and efficient digitally-based actions. Dr. Salomon performed analysis and accomplished her Ph.D. at Swinburne College of Know-how the place she is an trade and analysis fellow. Her expertise extends past the classroom as she has an intensive historical past in artistic manufacturing together with expertise as a producer, director, performer, and documentary-maker in radio, tv, and print media.
George Demiris, PhD, FACMI, is a Penn Integrates Data College Professor, Division of Biobehavioral Well being Sciences, College of Nursing & Division of Biostatistics, Epidemiology and Informatics, Perelman College of Drugs on the College of Pennsylvania. He’s a Fellow of the American Faculty of Medical Informatics and the Gerontological Society of America. His analysis focuses on the transformative position info and expertise can play within the healthcare of older adults and their households, and the technology of those modern private well being options in house and hospice care. George can also be the chair of the IDIH Professional Group that Catalyst facilitated all through the IDIH undertaking within the Unbiased and Related Dwelling area.
COMMON PRIORITY ONE: INTEROPERABILITY BY DESIGN
The assertion for Interoperability by Design because it pertains to digital well being and lively and well being growing older, created by the IDIH consortium and focus teams, is as follows: To make sure accessibility, sharing and safety of information from totally different sources, equivalent to IoT wearables and sensors by the event of worldwide requirements, and procedures and incentives for producers accessible by all international locations primarily based on an interoperability-by-design strategy of digital options for preventive and built-in care, impartial and inclusive residing of the older individuals
Present standing: The panelists parsed down the above assertion into the crux of the matter, which is info blocking (or sharing) with out particular effort. As Iana Simeonov said, Interoperability by Design “means with the ability to entry the proper of information on the proper time, and to have the ability to use that, to really make a distinction in individuals’s lives. … And if COVID did something good, it was push this to the fore, so that individuals truly actually understood how vital it was to share information. So it means having open information units, having requirements for information sharing that individuals actually have to stick to, and customarily having a extra collaborative ambiance the place all of us perceive that what we’re attempting to do is assist individuals and never simply hoard info.”
Obstacles: This concept of “hoarding” info can also be the place the most important challenges are seen as a way to additional the progress of Interoperability by Design”. A recurring theme all through the dialog was the thought of information being stored in siloes, as an example, as Nancy Finn talked about, in how digital well being information is (or isn’t) shared throughout the US or amongst international locations. As Dr. Salomon mentioned, expertise is supposed to be a seamless expertise such that interoperability shouldn’t be an idea obvious to the consumer – the info and tech must be translatable throughout consumer teams, with out, as Deven McGraw emphasizes, “particular effort”. Nonetheless, there are at the moment restricted to no incentives for companies holding this information to share, as it’s at the moment seen as proprietary, profit-generating capital. Compounded with the info and privateness legal guidelines within the US, it turns into obvious that “this lack of ability to alternate information isn’t truly about lack of technical requirements”, however as a substitute extra about information and privateness legal guidelines, requirements, and validation frameworks.
Alternatives: However, as introduced up later within the dialog, there’s hope – extra pocket of information alternate are rising, and the creation of TEFCA, the Trusted Trade Framework and Frequent Settlement, has additionally been mentioned positively with respect to facilitating information alternate. Extra persons are being reached the place they’re, whether or not that be within the house, a medical setting, or varied different services. There’s nonetheless a spot in entry, as talked about by Nancy Finn, and so there’s nonetheless ample want for entry, outreach, and infrastructure, in order that these populations “left behind” can have the identical alternatives and entry to those improvements as others. Lastly, the significance of together with the caregiver in these conversations was recognized as vital. By educating the caregivers, they’re geared up with higher assist and are capable of then higher assist their sufferers by facilitating higher understanding of their situation and assets obtainable 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 Challenge Supervisor at CATALYST @ HEALTH 2.0