Control of the PHR

Pondering my last post further…

While our reality is that there are both individual- and clinician-focused PHRs, in any PHR where there is co-located content (i.e. of both individual- and healthcare provider-origins) there needs to be a final, single arbiter of content, quality and control. While the ideal is that this should be as shared and collaborative as possible, my personal feeling is that in the long term, successful PHRs will be those with the individual at the helm, with the clinician/s participating as a key partner.

In addition, a PHR controlled by an individual is more likely to succeed and be used by healthcare providers if there are sound data management processes underlying the PHR to support sound data stewardship for all participants. We can’t underestimate the importance of ensuring that provenance of data is transparent, and that contributions to the PHR from external sources such as laboratory reports or discharge summaries remain intact and unedited etc. This is not a technical problem, but requires intelligent PHR design. Both individuals and healthcare providers need to be comfortable with how the individual’s data is managed and represented, ensuring protection of the integrity and traceability of externally sourced data, and allowing the individual to annotate or tag data with their own comments or concerns.

Provision of healthcare has traditionally been quite a paternalistic process. We clinicians have acted as stewards on behalf of our patients. Interestingly in my discussions with consumers even in recent years, many are happy for this status quo to continue, not feeling confident or competent to control or manage their health information. Yet ironically these are the same people who operate their own financial affairs, bank online, shop online, email, tweet and blog. Transitioning the control of health information back to the individual may not be as easy as we anticipate. Most groups anticipate that the consumer will be willing to take over as soon as we make their health information available to them. I think that the reality might be more challenging and not without controversy. It will require education processes to support the transition for both the individual and the healthcare provider.

We can pull out that old chestnut and as clinicians declare that data in a health record can’t be relied upon unless it has been entered by a clinician, however once you look at any amount of EHR data you will realise that clinician-entered data is not necessarily synonymous with quality. In counterpoint there are an increasing number of clinicians who can tell stories where their patients were able to correct their data when viewing a share computer monitory in a consultation.

I will vote optimistically and promote the case for individual’s to control their PHRs. Individuals are best positioned to act as the central integrator for the broadest range of healthcare providers who participate in their care, and I view the adding their own data as a bonus. The broader, the deeper, the richer an individual’s health information is, potentially the better the care that can be provided for them.

The sum is greater than the (isolated EHR) parts, let’s not undervalue that – encourage individual-controlled PHRs, but always with sound data stewardship as the highest priority.

2 thoughts on “Control of the PHR

  1. I agree that PHRs will need to address critical data handling issues such as ensuring that the source and provenance of data is clear, and that it is clear to anyone reading the PHR if “professionally sourced” data like lab results has been altered. I don’t think the standards clearly support this at the data element level today, and there’s confusion about how to ensure it once a health summary has been dis-agregated into its component parts.

    I also would like to suggest that perhaps there will always be several sources of truth, as physicians will still need to keep a record of the care they delivered and be willing to stand by it; if they use data from a PHR in making a clinical decision, they’ll likely need to incorporate that data or information into their EHR in order to be protected legally.

    So I agree that consumers have both the right to and accountability for tracking their health across time, and that it works best in partnership with physicians, but it will require significant education to make this partnership really work.

    • Lab results should not be able to be altered from a legal point of view – they are owned by other parties, and should only be able to be annotated. Imagine if anyone could alter any results – what chaos would ensue!
      I think it is a basic requirement of any health reocrd that all data recorded is recorded clearly along with the data source. In clinical consultations or procedures, it is not uncommon that nurses contribute some parts and doctors others – it is a fundamental architecture requisite to know unambiguously who the author is of each part of any health record, even when there are multiple authors of a final clinical document. and certainly this kind of functionality I am describing is fundamental to any credible EHR architecture.
      I am not advocating for a single record as a source of truth. I fully believe that each clinician/organisation will hold their own medicolegal record of care provided to a patient. The question is how will a broader, richer summary of an individual’s care be developed and maintained – not just from docs and nurses, but paramedical, allied health, dentists, alternative therapists, pharmacists etc – the breadth of healthcare providers that we often don’t include in our vision for the electronic health record. I can only foresee that a patient/individual/consumer-controlled record will be able to provide that aggregation and integration function, incorporating summaries or key componnets such as lab reports from multiple sources.
      If the clinical EHR wants to incorporate part of the PHR into their EHR then similarly they should similarly know unambiguously where that data has come from – traceable back to the individual’s data or to the original source in another provider’s system.

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