Will the new surge for digital health records (calling them 'electronic' is so...quaint) favor the technologists, providers and payors or will the voice of the citizen be heard and triumph? Steve Lohr at Bits reports on a new group, HeathDataRights.org, organized to insert patients' rights to their health and medical data into the discussion.
The new Web-based push comes a week after the Obama administration published a “preamble” document outlining the goals for electronic health records and the broad criteria for their “meaningful use” to qualify for incentive payments to doctors and hospitals. The administration document declared that its “ultimate vision” is one in which “all patients are fully engaged in their health care,” while physicians and clinics have real-time access to all the medical information they need to ensure the quality and safety of care...
The group’s declaration of “health data rights” states that individuals should have: the right to their own medical information; the right to know the source of each element of information; the right to take a complete copy of their health information; and the right to share their health data with others as they see fit.
In another of those 'there are no coincidences' moments, I have also come across a report developed by the National Institute for Health Innovation (NIHI) at The University of Auckland - Organizing Health Information in a eHealth Environment (pdf). These authors take the discussion of citizen data rights even further by proposing the following health information management principles that the HealthDataRights group should consider embracing.
- Health information should be recorded in a form that allows all relevant actors to be able to trust that information where appropriate
- Health information must always identify source and method of derivation
- Health information should be encoded to international standards wherever practical
- Primacy of patient safety
- All individual health information will be made available to all clinicians engaged in care of a patient with the understanding that there are ‘get permission or break glass’ components and ubiquitous audit trails
- Health information of all individuals will be shared in privacy-protected form to support healthcare quality improvement
- Statutory adherence
- Citizens can access their own health information
- Citizens can contribute to their own healthcare record
- Citizens can define additional access rights on their health information for other citizens, including granting of full proxies and other more limited access rights for specific purposes
- Citizens can review who has accessed their health information and have a clear and effective means of directing queries concerning such access
I particularly appreciated their analysis of the need to explicitly adopt a citizen-centric (NOT patient-centric) approach and to incorporate people’s social networks into health information and care policy:
If the health sector is citizen centric in its approach to health risks, threats, illnesses and other aspects of the healthcare spectrum, then it is essential to engage the ‘we’ in peoples’ support networks. People do not live in a social vacuum – the social context of people’s health is essential to building continuity dependability into the care network. To achieve this, there is a need for developing trust and respect in the supporting networks of people, which in turn may result in a growing capability to work and learn together in the interests of mutually supported health activities and outcomes. Should a person need complex care in such a complex environment, the person should be able to take advantage of the right context and functions in a multi-provider collaborative shared care structure. However, the kind of paradigm shift to citizen centric care requires the right policy context that supports enacting actual person centric continuity of care. This means, for example, that funding models will need to align with new strategic business plans for health care providers so that continuity is defined by the person’s (in their social context) need for care, rather than the provider’s capacity to provide care according to the system’s business model for care. Statutory changes are implied by this approach but were not explored in the interviews or by the expert panel.
You can read more about the declaration of health data rights and endorse them here. There are several clear roles for social marketers and health communicators to play in this debate including serving as advocates for the citizens who otherwise do not have a voice in these coin-operated policy debates. As I said in my endorsement: Access, openness, transparency, transportability, reliability, accuracy and personal ownership need to be dominant themes in these efforts.
Note: Coin-operated healthcare: when healthcare policy, treatment and access issues are determined by the number of coins you bring to the machine (cue Roger Waters).