Guidance and Recommendations

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Guidance for use of prognostic scoring systems in public health informatics

This is a preliminary draft. The survey “COVID-19: Ethics, Computing, and Resource Allocation – A Global Capacity-Building Project” is an initial attempt to seek clarity about challenges related to the use of information technology during public health emergencies, with special regard for prognostic scoring systems. Though it is a small pilot study with several limitations, a number of credible inferences may be drawn. These inferences cohere with what may plausibly be regarded as an evolving – and mostly uncontroversial – consensus.

The recommendations offered here are first approximations and intended to undergo revision. More study is needed to affirm them. Indeed, it would be a mistake to regard them as dispositive. Nothing about the recommendations should be understood to constitute medical or legal advice. The views entailed by these recommendations are those of the authors and not their institution, the study’s funding agency, or any other institution or entity.

The recommendations are offered as points to consider for

  • International organizations
  • Governments
  • Professional societies
  • Institutions
  • Individuals

There is overlap among them.  The recommendations are not fine-grained, although future work might include more detailed suggestions. The overarching goal of offering this guidance is to encourage and support capacity-building efforts at each level. These different issues, and guidance under them, are offered in no particular order.

General Challenges

There appears to be broad agreement that software quality, user knowledge and education, and racial or ethnic bias are significant sources of concern.

  • International organizations should use their moral authority and influence to signal the importance of these concerns; and consider efforts to encourage their consideration by all appropriate stakeholders.
  • Governments likewise should make clear that these issues should be addressed by civil society; and should consider providing resources to foster analysis, scholarship, and the identification of best practices, especially regarding ethical issues.
  • Professional societies should individually and in collaboration develop and promulgate recommendations for best practices and standards for development, implementation, and use.
  • Institutions ought to include matters of health information technology in institutional policies and develop or acquire professional development tools for those who use electronic health records, decision support systems, etc.
  • Individuals have a professional responsibility to attend to these issues and to incorporate this mindfulness into their daily work.

Governance and Oversight

The development, implementation, and use of prognostic scoring systems should enjoy some form of governance and oversight which should, among other things, ensure that such systems do not increase bias or worsen disparities.

  • International organizations should consider a kind of “meta-oversight” to encourage appropriate governance at all other levels.
  • Governments should govern – that is, decide what kind of regulations if any should acquire the force of law. Moreover, governments should provide resources to ensure these questions are adequately studied and scrutinized: best practices, standards, ethical, legal and social issues, etc.
  • Professional societies have an opportunity to fledge a kind of “weak” governance by emphasizing the relationship between professional and technical standards and best practices.
  • Institutions should ensure policies for the use of prognostic scoring systems and other decision-support tools.
  • Individuals have a duty to contribute to and be aware of governance and oversight developments and implications. Good faith adherence to appropriate oversight and guidance is a mark of an engaged professional.

Evaluation

Prognostic scoring systems should be evaluated before implementation and thereafter on an ongoing basis. Social effects should be among features being evaluated.

  • International organizations, governments, professional societies, and individual health care institutions – all should support tools and processes for system evaluation.
  • Individuals, that is, system users and others, should be regarded as essential stakeholders and included in all initiatives to develop and deploy processes to evaluate system use.

Liability

Though responsibility and accountability are essential to any endeavor, the world’s liability regimes remain inchoate.

  • Governments should encourage model legislation to manage future liability challenges.
  • Professional societies and academic institutions should foster scholarship to explore the challenges of balancing traditional “strict liability” and “negligence” torts.

Patient Consent

There is broad variability in views about the role of patient consent regarding the use of prognostic scoring systems.

  • Professional societies and academic institutions should foster scholarship to explore the salient differences between “disclosure” and “consent.”

Other

Most significantly, there is widespread agreement that greater “health information technology literacy,” including informatics ethics literacy, is needed.

  • International organizations, governments, professional societies, health care institutions, and individuals should all contribute to the improvement of such literacy.

 

Kenneth W. Goodman
Sergio G. Litewka

University of Miami

 

 

Page updated 30 January 2021