Fighting for the 'soul of the future of health together'

By Melissa Fassbender

- Last updated on GMT

(Image: Getty/manop1984)
(Image: Getty/manop1984)

Related tags Health care

The goal of the learning health system is to improve based on the experiences of every participant, sharing research knowledge to drive a “person-centered future of health,” says LHC CEO.

Joshua Rubin, JD, MBA, MPH, MPP, the founding president and CEO of the Learning Health Community (LHC)​ will be leading a luncheon discussion next week at the Bridging Clinical Research and Health Care conference in Washington DC. The event this year has partnered with the LHC, a nonprofit organization dedicated to sharing research knowledge to inform health decisions.

Ahead of the conference, Outsourcing-Pharma (OSP) caught up with Rubin (JR) to discuss the organization, its mission, and the challenges to making its goals a reality.

OSP: What is the Learning Health Community and what are its goals?

JR:​ First off, thank you so much for this opportunity to speak with you and with Outsourcing-Pharma. The Learning Health Community, though recently formally incorporated as a 501(c)(3) nonprofit organization, is at its core an entirely volunteer-driven multi-stakeholder incipient grassroots movement.

Our goals are fundamentally shaped by all the diverse (and passionate) people and organizations working together nationally and internationally to realize our shared vision. With that said, our overarching goals fall into three interrelated categories, anchored in a set of shared core values that embody a transformative vision for health care and health.

First, we bring together diverse stakeholders to accelerate the development and advancement of learning health systems (LHSs) at all levels of scale. In simplest terms, LHSs are anchored in a common cultural commitment to learn and improve as a result of the experiences of every participant.

Though there are myriad use cases, one overarching objective would be for each person to be healthier and better off because of lessons learned (and implemented) from those who came before.

Second, we want to realize better health for all by engendering the synergistic fusion of the efforts of these emerging LHSs to enable something genuinely transcendent to happen; something that truly revolutionizes (and empowers) every patient’s and caregiver’s experience of health, innovatively disrupts every clinician’s (and every other stakeholder’s) experience of delivering care and health, and ultimately transforms the health of nations (and the entire world).

To borrow a phrase from Joe Kanter, a godfather of this movement, we envision a world in which every decision affecting health is informed by actionable knowledge of “what works best.”

Third, and most importantly, we aim to fight for the soul of the future of health together (to borrow another expression from Joe Kanter). We want to drive a person-centered future of health that equitably advances everyone’s interests and the public good, that empowers everyone, that includes and benefits everyone, and that respects and reveres fundamental and foundational human rights.

That is why we began this movement by bringing together stakeholders at every point on the health compass to collaboratively develop a set of shared consensus core values that will guide the movement, and will empower all participants to recognize and think through important moral and ethical considerations that will shape the very character of the movement.

OSP: What are the main challenges to achieving these goals?

JR: ​The greatest challenges we face emanate not from technological limitations, but instead from the sheer audaciousness of our shared vision.

The work to be done cannot be done by any one person or organization or government alone; it necessitates lots of different types of people with seemingly divergent interests and perspectives all working together.

Doing so in ways that embody our core values requires new levels of openness and honesty with and amongst ourselves vis-à-vis what is not working in health care, which power structures and incentives are totally misaligned, what needs to be done to mobilize things in more positive and prosocial directions, and how we can actually muster the will and the resources to do what we all recognize urgently needs to be done. Transforming the future of health together in this way defines our shared moral imperative.

OSP: So, how do you make that happen?

JR: ​It is not for “me” to make happen, it is for “we” to make happen together. That requires having lots of different voices in the dialogue, especially those who are too often left out.

So, we need clinicians and government agencies, as well as companies that pay for care and deliver care, and conduct research to make the next generation of drugs and devices. We need corporations that compete vigorously with one another and stakeholder types that naturally mistrust one another to work together.

But perhaps even more importantly, we need patients and caregivers who have lived through Kafkaesque nightmares fighting disease while navigating our labyrinthine health care system, we need people and communities who have been least well served by the status quo, and we need people advocating for privacy who know firsthand what it feels like to be treated by a soulless corporation as a source of data or raw material rather than as a human being.

Hence, we must actively work to bring all these diverse voices into the dialogue, to listen to and respect one another, and to work together to give the gift of health to current and future generations (to yet again paraphrase Joe Kanter).

Building a movement to make this happen, anchored in our shared core values, requires lots of leaders. I recently came across the phrase, “leaderful movement.”

What an incredible expression; recognizing that no one of us can undertake this Herculean effort by ourselves, we need to strive not to be a leaderless movement, but rather to create the tools, the resources, the inspiration, and the elements foundational to collaboration and empowerment, that will nurture and support myriad leaders worldwide to separately and collectively propel our shared movement forward.

In doing so, together, we will be an unstoppable force for health.

Joshua Rubin is the program officer for Learning Health System Initiatives at the University of Michigan Medical School’s Department of Learning Health Sciences. He also serves as executive director and vice president of the Board of Directors of the Joseph H. Kanter Family Foundation.

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