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Organising Health Information in an eHealth Environment - Principles & Concepts


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Jim Warren
National Institute for Health Innovation (NIHI)
The University of Auckland
The presentation was accompanied by this video:

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Organising Health Information in an eHealth Environment - Principles & Concepts

  1. 1. Organising Health Information in an eHealth Environment: Principles & Concepts Jim Warren Chief Scientist, National Institute for Health Innovation (NIHI) The University of Auckland Tuesday, 30 September 2008
  2. 2. Overview Background & methods <ul><li>Preliminary findings </li></ul><ul><ul><li>Citizen Centric Models </li></ul></ul><ul><ul><li>Conceptual Information Model </li></ul></ul><ul><ul><li>Information Management Principles </li></ul></ul>road ahead Vision &
  3. 3. <ul><li>“ The Ministry requires services in the development of a conceptual information model, principles for information management and road map to facilitate and underpin further strategy, sector IT development and standards development in the health sector, with a focus on achieving continuity of care across health care settings” </li></ul>NIHI’s Mandate
  4. 4. NIHI’s Mandate ‘ citizen-centric’ conceptual model <ul><li>Supported by analysis including: </li></ul><ul><li>review of exemplar jurisdictions </li></ul><ul><li>stakeholder feedback </li></ul><ul><li>synthesis and vision </li></ul>
  5. 5. <ul><li>First-person inputs </li></ul><ul><ul><li>Domestic stakeholder interviews focusing on continuity of care in chronic disease management </li></ul></ul><ul><ul><li>Expert Panel feedback on first-cut citizen-centric eHealth model </li></ul></ul><ul><li>Desk research </li></ul><ul><li>Synthesis and iterative refinement </li></ul>Methods
  6. 6. <ul><li>Review of a selection of world-leading, informative models & jurisdictions </li></ul><ul><ul><li>thought-leading models </li></ul></ul><ul><ul><li>overseas jurisdictions </li></ul></ul><ul><ul><li>domestic innovations </li></ul></ul>Desk Research Overseas jurisdictions reviewed
  7. 7. Wagner’s chronic care model Co-production But possibly not reaching the limits on ‘ citizen-centric ’ Potentially opportunistic
  8. 8. <ul><li>Improve partnership between ‘client’ & health professional(s) </li></ul><ul><li>Partners in Health Scale (PIH) </li></ul><ul><ul><li>Knowledge of condition </li></ul></ul><ul><ul><li>Ability to manage symptoms </li></ul></ul><ul><ul><li>Ability to manage social impact </li></ul></ul><ul><ul><li>Progress towards a healthy lifestyle </li></ul></ul><ul><li>Problem & Goal Assessment </li></ul><ul><ul><li>Clinician and client identify a range of issues or problems affecting client </li></ul></ul><ul><ul><li>Note contrast of priorities, set goals </li></ul></ul><ul><li>Track Progress </li></ul>Flinders Model
  9. 9. <ul><li>Citizen-centric care implies empowerment </li></ul><ul><li>The World bank defines empowerment as: </li></ul><ul><ul><li>“ the process of enhancing the capacity of individuals or groups to make choices and to transform those choices into desired actions and outcomes” </li></ul></ul><ul><ul><li>“ Empowered people have freedom of choice and action. This in turn enables them to better influence the course of their lives and the decisions which affect them. However, perceptions of being empowered vary across time, culture and domains of a person's life.” </li></ul></ul>Empowerment
  10. 10. A few lessons from jurisdictions <ul><li>Some are ‘no-brainers’ </li></ul><ul><li>Some less clear </li></ul><ul><li>Many niche aspects worth further study </li></ul>
  11. 11. Conceptual Information Model <ul><li>What we need to deliver health and wellness in keeping with citizen-centric eHealth </li></ul>Not just ‘ traditional ’ health workforce Including knowledge and preferences Not just clinical issues
  12. 12. What Does the Model Show? <ul><li>Shifts from ‘patient/provider’ to actors and people (citizens) in partnership </li></ul><ul><li>Roles others than traditional providers are explicitly recognised as having validity and status </li></ul><ul><li>“ Health issues” can be about wellness or illness </li></ul><ul><li>Traditional clinical observations are little changed, but allow wider range of actors to contribute </li></ul><ul><li>“ Plans” are central and help define relationships of citizens and support networks </li></ul>
  13. 13. <ul><li>Clinical </li></ul><ul><li>Person centred </li></ul><ul><li>Family health / whanau ora </li></ul><ul><li>Community </li></ul><ul><li>Regional / National </li></ul>5 Levels of Continuity
  14. 14. <ul><li>We’ve come up with 11 </li></ul><ul><ul><li>Health information recorded in a form that allows relevant actors to trust information </li></ul></ul><ul><ul><li>Primacy of patient safety </li></ul></ul><ul><ul><li>Information available to clinicians, with ‘break glass’ and audit trails </li></ul></ul><ul><ul><li>Privacy-protected sharing of information for quality improvement </li></ul></ul><ul><ul><li>Citizens access, and contribute to own health record </li></ul></ul><ul><ul><li>Citizens add access rights for other citizens </li></ul></ul>IM Principles
  15. 15. <ul><li>Recorded in a form that allows all actors to trust it to appropriate level </li></ul><ul><li>Identifies source & method of derivation </li></ul><ul><li>Encoded to international standards </li></ul>Principles of Trust Health information:
  16. 16. <ul><li>Technology transforming relationship of ‘citizen’ to healthcare system </li></ul><ul><li>Continua Health Alliance video provides a neat exemplar: </li></ul><ul><ul><li>3 use cases </li></ul></ul><ul><ul><ul><li>Maintaining health </li></ul></ul></ul><ul><ul><ul><li>Chronic disease management </li></ul></ul></ul><ul><ul><ul><li>Telemonitoring of elders </li></ul></ul></ul><ul><ul><li>Citizens in centre </li></ul></ul><ul><ul><li>Proactive clinicians </li></ul></ul>Visions
  17. 17. Visions [Show video – 5 mins, 12 secs]
  18. 18. What’s right? <ul><li>Good base personas / use cases </li></ul><ul><li>Family supports clearly integrated </li></ul><ul><li>Clinicians access data without immediate patient consent </li></ul><ul><li>E-comms between doctor & patient </li></ul><ul><ul><li>Didn’t explicitly show email, but you’d think it’d be there </li></ul></ul><ul><li>Home monitoring </li></ul><ul><li>Same-place consults minimised </li></ul><ul><li>Wellness maintenance </li></ul>
  19. 19. What’s missing from the Continua video? <ul><li>All those people have good ‘environments’ </li></ul><ul><ul><li>Enough money for IT & nice housing </li></ul></ul><ul><ul><li>Somebody who cares </li></ul></ul><ul><ul><li>A basically good attitude </li></ul></ul><ul><li>Main characters with family support, but not much co-dependence </li></ul><ul><li>The Continua vision didn’t extend to: </li></ul><ul><ul><li>Population health & continuous process improvement </li></ul></ul><ul><ul><li>Clinicians working as genuine team </li></ul></ul>
  20. 20. What if they were more like John? <ul><li>Diabetic </li></ul><ul><li>Divorced </li></ul><ul><li>Unemployed </li></ul><ul><li>Poor knowledge of his illness </li></ul><ul><li>Poor control </li></ul><ul><li>Unhelpful lifestyle (diet, alcohol, exercise) </li></ul>Need a model that supports outreach to John, as well as letting John ‘drive’ if and when he’s ready
  21. 21. <ul><li>What if the Continua exercise junkie was struggling to make ends meet & bring healthy meals to the table for her 4 overweight children? </li></ul><ul><li>Then the relevant supporting personalities might be people other than professional personal trainers </li></ul>A Model for Real People
  22. 22. <ul><li>An iterative development path </li></ul><ul><ul><li>Create a consultation programme to involve clinical, consumer and special interest groups </li></ul></ul><ul><ul><li>More widely promulgate the rationale for citizen-centricity to promote debate </li></ul></ul><ul><ul><li>Further innovation on clinical roles and responsibilities, clinical care models and attendant processes </li></ul></ul><ul><ul><li>Ongoing development of underpinning standards </li></ul></ul><ul><ul><li>Develop an evidence base through further research and proofs of concept, recruiting existing leaders </li></ul></ul>Roadmap: Recommendations
  23. 23. Summary <ul><li>Consumerism, innovative private providers & ambitious national strategies are creating a new vision for eHealth </li></ul><ul><li>NZ systems ‘not broke’, but we can learn from offshore leaders </li></ul><ul><li>A citizen-centric model can provide a context to integrate the new possibilities </li></ul><ul><li>Need to promote iterative programme of innovation to make it happen </li></ul>
  24. 24. Questions? <ul><li>Contact Jim Warren ( </li></ul>
  25. 25. <ul><li>Must balance harms </li></ul><ul><ul><li>From lack of information against </li></ul></ul><ul><ul><li>From inappropriate divulging of personal health information </li></ul></ul>Primacy of Patient Safety <ul><li>Difficult to measure on each side of equation! </li></ul><ul><ul><li>Implies sharing of non-identifying information for quality improvement as long as likely benefits outweigh likely harm </li></ul></ul><ul><li>We suggest consumer accessible audit trail, with viable consumer query mechanism, as a key element of access strategy for identifiable information </li></ul><ul><ul><li>Break glass strategy (it’s the choice we make for fire alarms!) </li></ul></ul>