Gimme an… uhr?

What do we have?

You can have all the messages, connect-a-thons and profiles that you like – certainly you will achieve short- to medium-term connectivity wins but it is not enough. It is not sustainable and clinicians want and need to share relevant data when it is needed. Predetermined messages and documents will be a great start, but it’s not enough.

You can invest huge resources in terminology – we definitely need it – but terminology in isolation is also not enough.

You can demand all the ‘damn data’ that you want, but non-standardised data will still largely not be computable – largely limited to read-only access.

What do we want?

We hear talk about:

  • shared electronic health records;
  • semantic interoperability; and
  • health data liquidity.

Essentially these phrases describe different aspects of the same ‘elephant in the room’; just using different jargon…

We expect our healthcare professionals to be able to safely exchange important health information. To have the right health information available at the right place at the right time. To prevent us repeating our health histories ad nauseum. In fact a huge percentage of patients assume that we can already do this! But we can’t… yet. Shared health records are not easy.

What do we need?

A single data-driven “universal health record”, an uhr! And please note the deliberate lack of capitals.

What on earth is an uhr, I hear you quite reasonably ask…? A uhr is simply a non-proprietary pool of standardised health data which can be used for any purpose we want – PHR, EHR, EMR, SEHR, IEHR, research, epidemiology, reporting & stats, shared care, clinical decision support & more. There is no particular EHR application associated with it; in fact it works with any and every software program, vendor and healthcare provider.

The key (and I say it yet again)… it’s. all. about. the. data.

In addition, and supported by:

  • Collaboration at international, national, jurisdictional or organisation level to share and re-use the clinical data definitions, so that our health information can similarly be shared.
  • Clinicians driving the clinical content definitions – reflecting the information they need for recording health care for themselves and their patients, ensuring that EHRs are ‘fit for purpose’. Terminology integrated with these structured clinical content definitions to unambiguously define the building blocks of the health record.

As a result:

  • Message structures required for data exchange become more about the wrapper and less about content – much easier to negotiate and maintain.
  • Vendors no longer have clinicians locked-in to proprietary data silos
  • Tools used to do ‘clever stuff’ with our data need only to be built once to conform to these agreed clinical data definitions – think decision support, reporting, data repositories, and integration. Now that takes away a lot of the barriers we strive to overcome!
  • Data in a common format can be exchanged between systems – data liquidity becomes a reality, flowing to where it is needed and according to authorisation and access permissions.

Gimme a universal health record. Gimme my damn, um,… uhr, and let my data flow…

And so,  I archetype;-)

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.

Defining the PHR – take II

Following on from my April post regarding thoughts about Person Health Records, I’ve been working with Professor Dipak Kalra to clarify the definitions and purpose of PHRs. This work is intended to be part of a much larger document which describes PHRs and provides examples.

It is not an easy task – PHRs are difficult critters to pin down and most definitions are more a description, but here is my next take on trying to do so…

Personal Health Records are by their very nature hard to define and in order to tease out the breadth and depth of PHRs, it may be helpful to consider PHRs and clinical EHRs being positioned at two opposing ends of a spectrum of health records (see diagram). We could attempt to define a PHR as the direct counterpoint to an Electronic Health Record, but in practice the lines of demarcation are most often not clear nor desirable, except when viewed in terms of who has control over the health record and the content within.

While EHRs have traditionally been defined as “logical representations of information regarding or relevant to the health of a subject of care”, they have existed primarily for the purposes of the healthcare provider providing care to an individual. Information from EHRs may be made available to the subject of care or their authorised representative, upon request to the clinician who is acting as a steward of the health information. In some countries this is supported by specific legislation.

PHRs are also “logical representation of information regarding or relevant to the health of a subject of care”, however in the strictest sense these health records are primarily managed and controlled by the individual who is subject of care, or their authorised representative. The individual has rights over the clinical content held within a PHR, including the ability to delegate those rights to others, especially in the case of minors, the elderly or the disabled. The individual, or their authorised representative, is the key stake-holder determining that the content of the PHR is relevant and appropriate. Simplest examples include self-contained mobile phone applications that track a personal diet or exercise history – individual controlled and accessed only by the individual themselves.

However, in between these two strictest views of an EHR and a PHR is a continuum of person-centric health records with varying degrees of control, access and participation by the individual and their healthcare providers. Toward the EHR end of the spectrum, some EHRs provide viewing access or annotation by the individual to some or all of the clinician’s EHR notes. Conversely, at the other end of the continuum, some PHRs enable individuals to allow varying degrees of participation by authorised clinicians to their health information – from simple viewing of data through to write access to part or all of the PHR.

In the middle range of this continuum exist a growing plethora of person-centric health records that operate under collaborative models, combining content from individuals and healthcare providers under agreed terms and conditions depending on the purpose of the health record. Control of the record may be shared, or parts controlled primarily by either the individual or the healthcare provider with specified permissions being granted to the other party.  For example a shared antenatal record may be either primarily a PHR, under auspice of the individual, permitting authorised health care providers to contribute content or directly edit part of all of the record itself, or it may be an extension of an organisations EHR, permitting the individual to view or directly contribute content to some or all of the record. The exact nature of the sharing of responsibilities and participations by each party needs to be specified in the terms and conditions of the health record.

Intent of health information with a PHR may be purely for use by the individual themselves or it may be used to share with healthcare providers and others, such as family members.

Ownership of the PHR can be complicated – requiring differentiation between moral ownership of the health information content and technical/legal stewardship for storing and securing the data. Storage of health information upon a PHR platform that is managed by a third party requires a formal relationship between the two parties so that individuals can assert their rights, as must the third party uphold their responsibilities.

The content scope for a PHR varies according to purpose, and is broader than most conventional EHRs. In the maximal scope a PHR may have a breadth that encompasses health, wellness, development, welfare and concerns; plus a chronological depth which embraces history of past events, actions and services; tracking and monitoring of current health or activities; and goals and plans for the future. Some PHRs will have a very general, summary focus; others may be activity-driven eg a diabetes management record within a Diabetes community portal or an personal fitness and exercise record. An individual may choose to have one single summary PHR or multiple activity driven PHRs, or a combination of both.

Acknowledgement: Prof Dipak Kalra, CHIME, University College London