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BackgroundPatient-centered care promotes the inclusion of the most prominent and important member of the health care team, the patient, as an active participant in information exchange and decision making. Patient self-management of a chronic disease requires the patient to bridge the gap between multiple care settings and providers. Hospitalizations often disrupt established self-management routines. Access to medical information during hospitalization reflects patients’ rights to partner in their own care and has the potential to improve self-management as well as promote informed decision making during and after hospitalization. The objectives of this study were to elicit the perspectives of patients with chronic disease about desired medical information content and access during hospitalization.MethodsThis exploratory study incorporated a qualitative approach. The online survey included the research team created open and limited response survey, demographic and hospital characteristic questions, and the Patient Activation Measurement instrument (PAM®). Convenience and social media snowball sampling were used to recruit participants through patient support groups, email invitations, listservs, and blogs. The research team employed descriptive statistics and qualitative content analysis techniques.ResultsThe study sample (n = 34) ranged in age from 20 to 76 (μ = 48; SD = 16.87), Caucasian (91%, n = 31), female (88%, n = 30) and very highly educated (64%, n = 22 were college graduates). The PAM® survey revealed a highly activated sample. Qualitative analysis of the open-ended question responses resulted in six themes: Caring for myself; I want to know everything; Include me during handoff and rounds; What I expect; You’re not listening; and Tracking my health information.ConclusionsThis study revealed that hospitalized patients want to be included in provider discussions, such as nursing bedside handoff and medical rounds. Only a few participants had smooth transitions from hospital to home. Participants expressed frustration with failures in communication among their providers during and after hospitalization and provider behaviors that interfered with patient provider communication processes. Patients also identified interest in maintaining their own health histories and information but most had to “cobble together” a myriad of methods to keep track of their evolving condition during hospitalization.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-017-2487-6) contains supplementary material, which is available to authorized users.

Importance Although federal law has long promoted patients’ access to their protected health information, this access remains limited. Previous studies have demonstrated some issues in requesting release of medical records, but, to date, there has been no comprehensive review of the challenges that exist in all aspects of the request process. Objective To evaluate the current state of medical records request processes of US hospitals in terms of compliance with federal and state regulations and ease of patient access. Design, Setting, and Participants A cross-sectional study of medical records request processes was conducted between August 1 and December 7, 2017, in 83 top-ranked US hospitals with independent medical records request processes and medical records departments reachable by telephone. Hospitals were ranked as the top 20 hospitals for each of the 16 adult specialties in the 2016-2017 US News & World Report Best Hospitals National Rankings. Exposures Scripted interview with medical records departments in a single-blind, simulated patient experience. Main Outcomes and Measures Requestable information (entire medical record, laboratory test results, medical history and results of physical examination, discharge summaries, consultation reports, physician orders, and other), formats of release (pick up in person, mail, fax, email, CD, and online patient portal), costs, and request processing times, identified on medical records release authorization forms and through telephone calls with medical records departments. Results Among the 83 top-ranked US hospitals representing 29 states, there was discordance between information provided on authorization forms and that obtained from the simulated patient telephone calls in terms of requestable information, formats of release, and costs. On the forms, as few as 9 hospitals (11%) provided the option of selecting 1 of the categories of information and only 44 hospitals (53%) provided patients the option to acquire the entire medical record. On telephone calls, all 83 hospitals stated that they were able to release entire medical records to patients. There were discrepancies in information given in telephone calls vs on the forms between the formats hospitals stated that they could use to release information (69 [83%] vs 40 [48%] for pick up in person, 20 [24%] vs 14 [17%] for fax, 39 [47%] vs 27 [33%] for email, 55 [66%] vs 35 [42%] for CD, and 21 [25%] vs 33 [40%] for online patient portals), additionally demonstrating noncompliance with federal regulations in refusing to provide records in the format requested by the patient. There were 48 hospitals that had costs of release (as much as $541.50 for a 200-page record) above the federal recommendation of $6.50 for electronically maintained records. At least 6 of the hospitals (7%) were noncompliant with state requirements for pr...

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A paradigm shift is underway in the patient-clinician relationship, driven by irreversible changes in information access, yet the model under which clinicians are trained, care is conducted, and care delivery is designed has not changed significantly even though we call it “patient centered.” Humanity endured centuries in which even doctors had little idea what the patient’s problem really was. Science slowly solved that, and for a century, only doctors could know what was worth knowing. Today, the rise of the internet and digital health has led to the end of that era. We are already witnessing early signs of the era of participatory health: genuinely empowered people living their lives and managing their health according to their own priorities, in partnership and consultation with physicians as needed. This may feel like a threat to the physician’s sacred role, but it is no more so than when physicians adopted informed consent and then shared decision-making. In the 2010s, many pharmaceutical, medical, and health care companies started to use patient centricity as a mantra. We argue that to drive this paradigm change fully into existence, we need to shift “patient centricity” from a relatively passive process, driven by industry needs, into a far more active, collaborative process driven by both parties’ needs and preferences. To build this new world of practice and workflow, we simply must engage with patients as true partners. To achieve medicine’s new potential, it must be optimized around the wants and priorities of the ultimate stakeholder—the party that has the most at stake in how it all plays out: the patient. Patient design is the approach that can make it happen.