Disciplinary Perspectives on Patient Centeredness

CfD Conversation 2022_04 | October 27th, 2022

Written by Uri Seitz

The healthcare ecosystem is a vast network with a variety of actors that each play a role in the exploration, maintenance, and restoration of physical and mental well-being. In addition to the broadening understanding of the limitations of generalizations, there has been a growing understanding within healthcare systems that patients have information that is crucial for addressing their health-related needs — information that goes beyond simply being a laundry list of symptoms. This is an area where service design can contribute greatly; our moderators here at the Center for Design have been working with Politecnico di Milano toward mapping the cases and descriptions of patient-centeredness within the Boston and Milano ecosystems. This research is meant to uncover the similarities and differences between both ecosystems, find a concise definition of patient-centeredness, and investigate solutions that impact different levels of the ecosystem toward patient-centered outcomes.

This conversation is the first of a series exploring patient-centeredness. This event explored disciplinary perspectives, and in the next conversation, we will explore the patient’s side through patient advocacy groups. A group of researchers within industry, academia, and across different disciplines were invited to discuss what patient-centeredness means within their context and what can be done or needs to be addressed when designing patient-centered solutions.

Milano’s mapping of Patient-Centeredness, Politecnico di Milano

The state of patient-centeredness in US healthcare

Frequent themes shared across our expert panel included codesign, wellness, and the multilayered aspect of patient-centeredness. Through the sharing of observations many themes were commonly identified among participants, researchers from across all disciplines identified a lack of involving patient voices, especially from traditionally marginalized populations within the research that is supposedly made on their behalf. This has multiple problematic implications:

1. The research does not address the needs important to the community;
2. The research makes assumptions about the universality of solutions without exploring the unique aspects of the population studied, which might have subsets that respond to certain methods differently;
3. After millions of dollars are sunk into a project (as can often be the case in medicine) the incentive structures put into place encourage newly developed interventions to be pushed through anyway.

Patients themselves are generally not involved until a very late stage when you’ve already invested millions of dollars. You’ve done a lot of work to demonstrate visibility and pilot, or better efficacy, maybe even in a placebo-controlled trial of a thing that may or may not have real-world impact.

— Leanne Chukoskie

Photo by Estefania Ciliotta

An interesting divide also surfaced regarding how the field was developed for clinical practice and how the research is conducted. For instance, music therapy was described as highly patient-centered, you consult with the patient, find out what music they grew up with, what they enjoy listening to, and aspects of their motor abilities and cognition before deciding upon a treatment plan. Despite music therapy exemplifying many of the qualities of patient-centeredness in its practice, medical research within music therapy can fall short of this standard. Psyche Loui brought up a case in the medical research for music therapy where there was no patient involvement in the ideation process and common practices that would be used in the clinical setting. For instance, finding music from an individual’s childhood was ignored in favor of spending millions of dollars to play Mozart and Heiden as an intervention to predominately Black and Hispanic populations.

When asked where there is potential for creating more patient-centric care:

[There is] a lot of space for developing systems that can flexibly engage with individual participants, needs, and interests […]

— Psyche Loui

Untapped potentials

Additionally, panelists mentioned that this lack of patient involvement is not only problematic from the perspective of meeting patients’ needs but is also missing out on the untapped potential of patient creativity.

Patients may not be experts in healthcare or design, but they are experts in their own lived experience; and bring perspective, knowledge, and capabilities that are worth listening to and engaging with as equal partners in patient-driven innovation. Towards this, it is important that codesign practices occur in safe spaces, that the relevant information is communicated in a way that is easy to understand, and that steps have been taken to minimize the burden on patients’ time and health while engaging in this process — being cognisant of the fact that for many patients the burden in taking part in the research is higher than that of the general population. It is also important to respect patients’ time by translating the patient-driven innovation you develop onto the market, which feeds into another significant point of conversation for the panel…

So we were trying to use the idea of listening not only to the needs, but to their creativity; because they don’t have only experiences, they also [have] capabilities. It’s not just, being able to listen with protocols, but to letting them participate with equal power throughout the process. Not just in the inquiry phase, but all throughout the phases.

— Stefano Maffei

Photos by Estefania Ciliotta

Incentives in the US healthcare system

There is a larger ecosystem in which not only the patient/researcher or patient/physician interact but also the interconnected web of service providers operate within. Every node within this sphere operates on an incentive structure; it is important to understand what that is in order to involve that node in improving patient-centered practice.

• Doctors are often overworked and constrained by their limited time with a given patient. Patient-centeredness requires time and energy, thus a need to minimize doctors’ administrative burden was expressed. A suggestion toward this end was that AI might be mobilized to reduce these procedural frustrations for both doctors and patients.
• The incentives of researchers are to publish research and deliver on grants; it was expressed that grant agencies should value qualitative research more than they currently do, such that there is a tie to actual expressed patient needs.
• The incentives for insurance are to keep their payouts low. As the patient’s portion of the cost needs to be minimized, insurance is the one who, within a patient-centered process, would pick up the slack. But this either needs to be addressed at the policy level or by convincing insurance agencies that by covering these services, they can lower their expected costs — either in administrative efforts or in needing to cover a more serious complication that an earlier given intervention would have lowered the likelihood of.
• Hospitals, like any business, are incentivized to mind their bottom line, and thus there is a need for businesses to see the economic value of patient-centeredness/patient-centered/patient-driven solutions. What is important when engaging patients is to ensure that as the patient-centered solution works its way through the web and that the core values originally expressed are continually consulted throughout the entire process, such that the final result can clearly be traced back to the patients that drove its innovation.

[…]patient-centeredness often includes helping clients understand and see the business value, right? And so connecting the business chain or the value chain across that system [….]

— Jen Briselli

Screenshot from google jamboard with input from the event’s virtual community

The focus was largely on the US healthcare ecosystem but the Italian ecosystem, while on a single-payer system, also contends with questions of policy and mobilization; on insuring that the patient’s values and efforts don’t get lost to the processes and that the final outcomes are oriented in a way that makes sense to the patient. Toward this end, there is also a need to consult with patient advocacy groups.

I was just thinking how kind of layered all these systems are, because here you’re {Don Robinaugh} talking about you and Psyche, or maybe talking about the biological system of the human being, and how that in is interacting with the environment. And then we have this kind of other layer of the physician patient- system, or the healthcare provider-patient system, and how those are producing care. And then we kind of back out to Roberts level, where we have this entire infrastructure.

— Michael Arnold Mages

The panel discussed the importance of the well-being of physicians being a component of the well-being of patients and that a solution for patients needs to also be oriented around their care professionals. Panelists suggested things like: engaging with patients empathetically through active listening; and redesigning spaces and/or choosing locations to be more aesthetic to both physicians and patients. Particularly stressed was the role environmental beauty plays in patient-centeredness by improving the attitude of both patients and providers which allows for greater ease in emotional communication.

What can we do as designers to enable providers to change how they are approaching their practice? So that they have more opportunities to treat patients the way providers really actually do want to be treating their patients, but aren’t necessarily able to within the confines of the system that they’re in.

— Robert Reimann

Highlights of the panel discussion

1. Codesigned — There has been a major dearth of patient voices in informing research goals, moving forward patients need to have more involvement starting in the ideation stage of research, lasting throughout the process. This is especially important for patient voices coming from communities that have traditionally been misrepresented. The methodologies of research should also expand to qualitative research rather than devaluing research that is not represented in a double-blind study.
2. Multilayered — The layer of the human biological system with the environment; the layer of the physician-patient system; the physician with the healthcare institution they belong to; the entire macro level of the system that influences the healthcare institutions, from pharmaceuticals and health tech producers to insurers, to government policies. Each of these layers affects patient outcomes and needs to be taken into consideration when designing solutions, and coordination within this ecosystem is vital for patient-centered care.
3. Wellness — The emotional well-being of patients and care professionals has an enormous impact on patient outcomes. This may be done by engaging with patients empathetically and/or redesigning spaces or choosing locations to be more aesthetic to both physicians and patients.

Want more? Listen to the recording of the event:

CAMD Curators and Moderators

• Michael Arnold Mages, Assistant Professor, Design, Experience Design, Information Design,Co-director, Health & Wellness Design Lab https://camd.northeastern.edu/faculty/michael-arnold-mages/
• Miso Kim, Assistant Professor, Art + Design, Co-director, Health & Wellness Design Lab https://camd.northeastern.edu/faculty/miso-kim/
• Estefania Ciliotta, Post-Doctoral Strategist & Researcher, Art + Design, Center for Design, Co-director, Health & Wellness Design Lab https://camd.northeastern.edu/faculty/estefania-ciliotta-chehade/
• Paolo Ciuccarelli, Founding Director of the Center for Design (CfD), Professor of Design https://camd.northeastern.edu/faculty/paolo-ciuccarelli/

Roundtable Panelists

• Jen Briselli, Chief Design Strategy Officer, Mad*Pow
• Leanne Chukoskie, Associate Professor Physical Therapy, ReGame-XR Lab, Northeastern University
• Jason Gorman, Founder and CEO, Jackrabbit Learning Experience
• Psyche Loui, Associate Professor of Creativity and Creative Practice, CAMD, Northeastern University
• Stefano Maffei, Full Professor, Design Ph. D., Design Department, Politecnico di Milano
• Robert Reimann, Director of Experience Design, Athena Health
• Don Robinaugh, Assistant Professor Applied Psychology, Northeastern University

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