Why Experts Can’t Agree Who Should Hold the Digital Health Records of People with Disabilities

People with disabilities die earlier, get sicker, and receive worse care than the general population — and a growing body of evidence suggests that much of this gap has less to do with impairment itself than with how health services are organized around it. Digital healthcare has been promoted as a fix, promising seamless records, coordinated care, and services that follow the patient rather than the other way around. But a new qualitative study argues that these benefits cannot simply be assumed to transfer to disabled users, and it exposes a striking fault line running through the very professions expected to build and deliver such systems: the experts broadly agree on what information a digital health service for people with disabilities should contain, yet they cannot agree on who should hold it, who should see it, or whether it should be built for this population at all.

The study, published in BMC Health Services Research, was conducted by Jae-Hak Kim and Kyu-Min Kim, researchers based at Korea University in Seoul and Gyeonggi University of Science and Technology. Between February and April 2025, the pair carried out semi-structured interviews with 20 seasoned professionals, each with at least a decade of experience providing services to people with disabilities. The participants spanned five distinct fields: medicine, nursing, and clinical psychology; rehabilitation therapy; physical activity and health promotion; social welfare; and health information and assistive technology. The design was approved by the Institutional Review Board of Korea University and conducted in accordance with the Declaration of Helsinki, with written informed consent obtained from every participant before data collection.

What makes the methodological architecture of this study genuinely novel is its role-centered matrix approach. Before the interviews began, the researchers conducted a preparatory literature review that identified ten service domains — the essential functions any digital healthcare service for disabled people would need to cover. These ten domains became the ten questions of the interview guide and, crucially, the columns of a matrix. Professional roles formed the rows. As interviews were transcribed and analyzed using the framework method — a well-established qualitative technique in health services research — the matrix served as the charting structure, allowing the team to map, cell by cell, where professionals converged and where they collided. The analysis itself was performed in MAXQDA 24 by the two authors, and the reporting followed the Consolidated Criteria for Reporting Qualitative Research, the standard transparency checklist for interview studies.

The convergence the researchers found is, on its face, encouraging. Across all five disciplines, participants broadly agreed on the types of information the service should contain — a shared vision of the content of a digital health record for people with disabilities. They also agreed on the key delivery settings: public health centers and disability welfare centers emerged as the natural institutional homes for such a service. In a sector notorious for professional silos, this level of consensus on content and setting is a meaningful starting point for any future system design.

But the disagreements are where the study becomes genuinely revealing. Participants differed sharply on who should hold the record — the custodianship question that sits at the heart of every digital health architecture. Positions ranged from public health centers alone holding the record to private institutions providing services sharing custody. They also differed on the extent to which access should be provided, a spectrum running from tightly restricted, single-institution access to broad access across the private institutions delivering care. These are not minor implementation details; they determine whether a disabled patient moving between a hospital, a rehabilitation clinic, and a welfare center encounters one continuous record or a series of disconnected fragments.

A second, recurring division cut even deeper: whether the digital service should be designed specifically for people with disabilities, as a dedicated system tailored to their needs, or incorporated into systems serving the broader population. This is a classic design dilemma in digital health — specialized systems can be more responsive to particular needs but risk fragmenting care and duplicating infrastructure, while integrated systems promise universality but can bury disability-specific requirements inside generic workflows. What the researchers found remarkable was that these positions were not random. Within this panel, the stances professionals took were largely consistent with the information needs and perspectives of their own disciplines and with the settings in which they worked. A rehabilitation therapist, a social welfare officer, and an assistive technology specialist each saw the system through the lens of their daily practice — and each drew the boundaries of the system accordingly.

This discipline-dependent pattern is the study’s central conceptual contribution. It suggests that the barriers to digital healthcare for people with disabilities are not primarily technical. The tools exist; the standards exist; the connectivity exists. What the role-centered matrix exposes is that the real obstacles are professional and institutional — each discipline brings a coherent, internally rational view of what the system should be, and those views do not automatically align. Any design process that treats multidisciplinary collaboration as a matter of goodwill rather than as a structured negotiation between divergent professional perspectives is likely to reproduce these fault lines in the final product.

The authors are careful about what their findings can and cannot claim. The result is an expert-derived conceptual model, not a definitive service specification. Twenty professionals in one qualitative panel can illuminate the structure of professional disagreement; they cannot settle it. And the authors flag two unresolved issues as particularly important for the intended users of any future system. The first is accommodating variation within the population itself — people with disabilities are extraordinarily heterogeneous in their needs, capacities, and communication styles, and a service designed around an average user may serve almost no one well. The second is arguably the thorniest: exercising access rights when capacity to consent is in question. Digital health records presuppose a user who can log in, understand what is being shared, and authorize it. For people whose capacity to consent is impaired, the entire access-control model of digital healthcare needs rethinking — and the study shows the expert panel did not resolve how.

There is also a candid limitation the authors state plainly: people with disabilities were not involved as participants, advisers, or members of the research team. The study captures how the professionals who deliver services perceive their roles and feasible forms of collaboration — a perspective that is necessary but insufficient. The authors are explicit that validation and co-design with people with lived experience of disability are the necessary next steps. In disability studies and health equity research, this is not a procedural nicety; the slogan “nothing about us without us” reflects a hard-won understanding that services designed for disabled people without their participation systematically miss the mark.

The stakes of getting this right are considerable. As health systems worldwide race to digitize, populations that are already underserved risk being locked into architectures that were never negotiated with their needs in mind. This study offers policymakers and system designers a map of the professional terrain they will have to cross: consensus on content and delivery settings, disagreement on custodianship, access, and specialization, and positions that track professional identity more than abstract principle. The role-centered matrix approach itself may prove as influential as the findings — a reusable instrument for surfacing, before a single line of code is written, exactly where the disciplines will clash. The next chapter belongs to co-design: putting people with disabilities at the table not as subjects of a system but as its architects.

Subject of Research: A qualitative interview study of 20 multidisciplinary professionals maps expert consensus and disagreement on designing digital healthcare services for people with disabilities.

Article Title: Multidisciplinary perspectives on digital healthcare for people with disabilities: a qualitative study using a role-centered matrix approach

Article References: Kim, J.-H., & Kim, K.-M. (2026). Multidisciplinary perspectives on digital healthcare for people with disabilities: a qualitative study using a role-centered matrix approach. BMC Health Services Research. https://doi.org/10.1186/s12913-026-15854-8

Image Credits: AI Generated

DOI: 10.1186/s12913-026-15854-8

Keywords: Multidisciplinary, perspectives, digital, healthcare, people, disabilities, qualitative, role-centered, matrix, approach, scientific research