This study shows a wide range of PHR policies across early adopter organizations in 2007. This variance can be explained by inter-state, organizational, and personal preference factors. For example, access for minors is governed by legislation at the state level. The availability of normal laboratory results is an inherently organizational decision, and clinician response times to patient emails is largely left to individual clinician preference.
Observing the wide range of policy responses, we seek to stimulate discussion toward standardizing guidelines by proposing a “best practice” model that seeks to maximize the patient-centeredness of PHRs. We develop a patient-centered policy model informed by concepts of patient empowerment and full control of the personal health record.18
Where evidence exists, we note patient preferences for various policies, and where the evidence is less clear, we offer suggestions based on broader principles for patient-centered care previously described. shows a proposed patient-centered policy model derived from these principles.
Patient-centered policy model
In our survey, policies vary for patient access to normal laboratory results. Some personal health records make normal laboratory results simultaneously available to patients and clinicians. Others have delays based on clinician sign off that can extend up to 7 days. There is evidence that physicians support direct reporting of normal laboratory results to patients,20
and that timeliness of receiving normal laboratory results is important to patients.21
Given that clinicians still review all laboratory results, we see no substantive advantages in delaying release of normal laboratory results to patients.
Electronic messaging has been reported by patients as being one of the most useful features of a PHR,7
however some clinicians have more guarded views and experiences.22
A decade ago it was noted that as patient messaging increases, the response time may need to change from a standard 2–3-day turnaround,23
but our results show that clinician turnaround times have generally not shortened. No clear guidelines exist, however it is our view that if PHR messaging is to be a legitimate supplement to clinic telephone calls, then similar communication protocols will need to be applied. For example, the communication pathway for practices wishing to incorporate PHR messaging will need to include timely messaging checks. We propose a one-business day practice response time that at a minimum, acknowledges receipt of the message, indicates proposed actions by named parties, and provides a likely timeframe to completion.
Emergency access to health information has long been held out as a pivotal expectation of personal health records by patients and clinicians.24–26
The majority of institutions surveyed do provide “break the glass” features that patients could enable or disable. We believe “break the glass” functions represent one of the most important alignment and visions of patient-centered care and personal health records.
By the standards we propose, PHRs of the surveyed organizations support patient-centered care to varying degrees. All the functions of an ideal patient-centered model are collectively visible across organizations, except for patient access to clinical progress notes. While patients have the right to obtain copies of their records under US law,27
providing online access to clinical notes still remains at the discretion of clinicians and organizations. Many have expressed concerns about the potential consequences of making clinical records available to patients.28
Some have been concerned that because clinical notes are intended more for personal recall30
and professional communication, they may be ill suited (eg, confusing, worrisome) for communication with patients.32
However, in one study patients valued access to clinical notes even when technical jargon made parts of the notes hard to understand.33
These patients valued transparency as much as the information content of the note, and did not want access to the actual clinical note to be supplanted by access to a simple patient-oriented visit summary. Overall, given the lack of demonstrable benefit in providing online access to clinical notes, there has been little interest in the practice.9
In spite of the concerns of some (not all) clinicians,34
the fact remains that many patients desire online access to their clinical progress notes,35
and online representations of clinical progress notes must faithfully reflect the original source data.36
We believe restricting access to clinical records is antithetical to principles of patient-centeredness, and we suggest that further work be done to educate and support clinicians with best practice medical record documentation, and that further studies be undertaken to examine the consequences of large-scale, personal health record patient access to clinical progress notes.
This study has some limitations. It was conducted at the end of 2007 and the functionality of personal health records can change rapidly over time. This was demonstrated in the speed with which PHR functions were changed when incorrect or inappropriate institutional claims data was incorrectly migrated into a public personal health record.36
In this context, while we acknowledge that this study is a snapshot in time, the 10 items examined are policy issues that are fundamental to PHRs now and in the foreseeable future.37
We develop a patient-centered model with full patient empowerment, acknowledging that patients differ in their desire for access to, control of, and participation in information sharing and decision making.38–41
One can envisage a continuum of patient control with our model representing one end of the spectrum. We did not examine all PHRs but purposively focused on larger, more experienced early adopter organizations and it was not our intention to be comprehensive. The study design excludes organizations with small user numbers and this creates a tendency to over-represent large health system PHRs that utilize information held in underlying electronic health records. However, we believe that the recommendations for best practices are appropriate for smaller sites as well.