In 1973, David Warner and I were the first to suggest in the literature that patients be routinely given their medical records. Now, a few years later, this is actually being done. An article on how this is being implemented was accepted for publication in the Journal of Pediatrics - Clinical Practice, and the editor, Michael Cabana, asked me to submit a commentary.
Those many years ago when David and I wrote the original article, I couldn't have envisioned the context of humanistic medicine. Now it seems crystal clear. Likewise, those many years ago, I couldn't have imagined the context of corporatized practice, and I would have been hard-pressed to come up with policy recommendations to implement humanistic medicine in that organizational context. Now, that too seems crystal clear.
So, without further ado, here is that commentary, as published in Volume 17, September 2025.Journal of Pediatrics - Clinical Practice.
The Journal of Pediatrics: Clinical Practice
Volume 17, September 2025, 200155
https://www.sciencedirect.com/science/article/pii/S2950541025000171
Commentary
Open Notes in the Context of Humanistic Medicine
Budd N. Shenkin MD, MAPA
Cite
https://doi.org/10.1016/j.jpedcp.2025.200155
Refers to
“Open Notes” in Pediatric Acute Care Cardiology: Caregiver and Provider Experiences in a Single Center
The Journal of Pediatrics: Clinical Practice, Volume 16, June 2025, Pages 200147
Megan Rodts, Dana B. Gal, Brittney K. Hills, Elisa Marcuccio, Colleen M. Pater, Samuel Hanke
Giving patients their medical records was an idea first proposed in the literature over 50 years ago.1 As Rodts et al relate in their article, it took the innovation of the electronic health record to make record sharing practical. Sharing the medical record (SMR) has many objectives, but the major ones are that, by providing transparency into the record, patients will be better able to understand their case, and a frank and trusting clinician-patient relationship will be established in the process. The importance of SMR can best be understood by placing it in the perspective of humanistic medicine (HM) as it has developed over the years.
Medicine has always been a partnership between curing and caring. Curing is the realm of biomedicine (BioM); caring is the realm of (HM). The ultimate objective of HM can be said to have the patient feel known and respected as a person, and to feel cared for and cared about in the medical care process. In the history of HM, the focus has usually been appropriately on the doctor-patient relationship. Peabody's classic 1927 article, The Care of the Patient,2 emphasized knowing the patient personally, with “the material and spiritual forces that bear on his life.” He observed that “the treatment of a disease may be entirely impersonal; the care of a patient must be completely personal.” Szasz and Hollender's 1951 article updated Peabody's view by describing three types of doctor-patient relationships, each appropriate to a different situation: active-passive; guidance-cooperation, and mutual participation.3 As diversity in society became more recognized and the emotional aspect of care further elaborated, later teachers offered more details on the doctor's ideal role. For example, Branch et al noted the importance of “the physician's attitudes and actions that demonstrate interest in and respect for the patient and that address the patient's concerns and values. These generally are related to patients' psychological, social, and spiritual domains.”4 Schattner cited the “Three C's”: “‘comprehension' of the patient's narrative and importantly – emotions; leading to ‘compassion' and a ‘commitment' to act trying to help as much as possible.”5 Other important HM elaborations have also emerged, including narrative medicine, cultural relativity, spiritual comprehension, medical ethics considerations, and end-of-life palliative and hospice care.
Clearly, SMR belongs on the list of developments relevant to HM. While SMR is a general approach, each situation is specific. Rodtz et al outline their initial implementation approach in a highly-technical inpatient ward with highly medically literate patients without special preparation of patients or training of personnel. They found, as others have, that while the initial experience is generally positive, patient acceptance, and even enthusiasm to be part of the team, is easier to achieve than is clinician acceptance.6 Because implementation is always a process, the authors' ideas for further training of medical personnel are sensible next steps.
It is also important to get perspective on how radically different our modern context of HM is, as compared to the past. The geometric expansion of BioM has drastically changed the organization of health care. It is no longer the doctor and the patient simply meeting together in isolation. Medicine now involves innumerable subspecialists and a plethora of new testing, general hospitalist care for inpatients, as well as interdisciplinary team medicine at all levels. Additionally, modern medicine is delivered through very large corporate entities managed by business-oriented leaders, and insurance companies not only pay for care, but often dictate many of the terms of care, including often problematic prior authorizations. Patients are thus now faced with many doctors and other professionals with whom they do not have a continuous relationship, challenges in finding a single source of reliable caring within these complex organizations, threats of getting lost in the system and being treated as a unit of some sort rather than as a known person. In other words, patients now not only interact the known quantity of “their doctor,” they also encounter the unknown through faceless medical organizations, including the residual of organizational complexity.
It stands to reason, then, just as Peabody and the others have urged individual doctors and others to practice HM, we need to urge the organizations themselves to practice HM. The organizations act directly with patients, and can be perceived as attentive and caring or oblivious and bureaucratic. For example, is the phone tree patient-friendly? Is there someone in charge of monitoring the patient's progress at all times, who connects with them on a regular basis? Are appointments easy to make, and above all, timely in serious situations? Does the system enable close collaboration of clinicians, and does it enable primary care providers to easily make out of network referrals if that is in the patient's best interest? The organizations need to take responsibility for their impact on HM. Besides the direct effects that organizations have, they also acutely condition how the clinicians can practice HM. Are clinicians given the organizational support they need so that HM achievements are possible? Are they given enough time per patient? Are they given the necessary tools (in this instance, is SMR supported completely?) Are they given enough helping staff? Do clinicians have easy access to affecting the organization's HM practices and policies? Finally, does the organization provide incentives for HM beyond the clinicians' inherent idealism? Recognition is terribly important.
For the organization to take responsibility, it needs to formally establish HM as a top organizational priority, alongside BioM excellence and financial responsibility. Managers need to be held responsible for measuring and implementing HM in the organization. Budgets need to support HM development, just as budgets always support BioM innovations.
If and when organizations assume HM responsibility, efforts like those of Rodtz et al will be newly empowered. The technological revolution will give them strength – AI may well be able to make medical records understandable to those with different levels of medical sophistication. Language that may be objectionable to patients will be replaced.7 When “the idea that the electronic health record is a self-contained, unitary product (is) abandoned once and for all,”8 additional patient-centered capacities will make tracking patients' progress and helping them constantly a routine capacity. But unlocking the wonders of modern technology to empower HM is dependent on the priorities determined by our current medical organizations.
The good news is that the techniques are close by and obtainable, so that the medical record can be the central element in maintaining HM as a true partner to BioM advances in both caring for patients and curing them. It is simply a matter of priorities. And where there is a will, there is a way.
References
1. 1
B.N. Shenkin, D.C. Warner
Giving the patient his medical record: a proposal to improve the system
N Engl J Med, 289 (1973), pp. 688-692
2,
F.W. Peabody
The care of the patient
JAMA, 88 (1927), pp. 877-882
3,
T.S. Szasz, M.H. Hollender
A contribution to the philosophy of medicine
AMA Arch Intern Med, 97 (1956), pp. 585-592
4.
W.T. Branch, D. Kern, P. Haidet, P. Weissmann, C.F. Gracey, G. Mitchell, et al.
Teaching the human dimensions of care in clinical settings
JAMA, 286 (2001), pp. 1067-1074
5.
A. Schattner
The essence of humanistic medicine
An Int J Med, 113 (2020), pp. 3-4
6.
J. Walker, J.D. Darer, J.G. Elmore, T. Delbanco
The road toward fully transparent medical records
N Engl J Med, 370 (2014), pp. 6-8
7.
I. Toler, L. Grubbs
Listening to tik-tok – patient voices, bias, and the medical record
N Engl J Med, 392 (2025), pp. 422-423
8.
J.E. Harris
An AI enhanced electronic health record could boost primary care productivity
JAMA, 330 (2023), pp. 801-802
