Designing and Implementing Standardized Clinical Encounter Forms and Modules to Support HIV Care Geneva- March 2004

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Designing and Implementing Standardized Clinical
Encounter Forms and Modules to Support HIV
CareGeneva- March 2004

• John Milberg, US Dept. of Health and Human
  Services, Health Resources and Services
  Administration,
• HIV/AIDS Bureau, Rockville, MD USA

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The Challenge

• Design and implementation How do you get useful
  and timely information into and out of a data
  collection system designed to track a
  multi-faceted, chronic condition
• Whether its a paper form or a computerized
  information system, PDA, or phone-based system,
  the HMIS should help
• The provider of care in their daily activities
• The larger public health system and the ability
  to monitor HIV care and supplies on a population
  basis

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System Functions and Outputs

• Enable care providers to readily collect, use and
  report information on main aspects of HIV care,
  TB treatment and follow-up, pregnancy/ PMTCT.
  etc. in a format that is useful to them and to
  others providing clinical support.
• Track prescriptions(and fees?) and drug stocks at
  point of care
• Deliver data to and from central monitoring
  points (WHO) Provide mechanism for data to be
  entered into or transmitted to a central location
  so that treatment and care information can be
  used for quality of care management and oversight
  
• Provide clinical support for treatment
  decision-making (real-time vs. delayed)If
  caregiver is uncertain how to treat, how do they
  get support? Can they get it in real-time? Do
  they need clinical decision support in real-time
  in all instances?

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Standards to do What?

• Provide treatment and ensure quality of care
• Track
• Drug prescriptions and inventories, lab results
  
• Adverse events/side effects, reasons for changing
  therapy
• Adherence
• Clinical Course (OIs, body weight, stage of
  illness, etc.)
• TB prophylaxis/Treatment
• Pregnancy history/PMTCT
• Quality of Life
• Report aggregate informationfor WHO, PEPFAR,
  TGF, etc.
• Establishing common standards in data
  collection and reporting can reduce burden to
  providers AND improve capacity to monitor care

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Standards to do What?

• Assess quality of care and needs What does the
  individual patient require?
• Who should start ARVs, TB, and other
  medications?
• Who is failing and should have medications
  changed?
• Who has missed visits and requires follow-up?
• Who requires supportive care for adherence,
  transportation, mental health

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Barriers to Implementation

• To ensure minimum standards of care and adequate
  patient follow up, do care providers have the
• Time,
• Adequate training and
• Flexible data management and reporting tools?
• Are information systems--whatever form--able to
  help with these client-specific monitoring tasks
  and many other broader functions (assessing
  trends overall, producing reports, exporting data
  to a central administrator).

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WHO Chronic Care with ARV Therapy Translating
Complicated Treatment Protocols into Simple
Clinical Information and HIV Care Delivery Systems
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• Unaided human decision makers do not possess the
  consistency of behavior or the accuracy of
  perception necessary for the consistent delivery
  of recommended therapies
• Source Morris AH. Developing and Implementing
  Computerized Protocols for Standardization of
  Clinical Decisions. Annals Internal Medicine
  2000 7 (132).

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Desired Features of Paper Forms

• Attributes
• Clear and as simple as possible for caregiver to
  follow treatment protocol
• Outlines essential alerts, warnings, and
  reminders on treatments (e.g. Dont prescribe EFV
  in pregnant women dont start ARVs until certain
  clinical criteria are met, Ruling out active TB,
  etc)
• Design of form should allow ease of data entry
  into HMIS upon completion, allowing for clinical
  overviews to be fed back into clinic (timely
  quality assurance)

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Limitations of Paper Forms

• Difficult to clearly convey all decision rules in
  the form at time of care- becomes complicated
  quickly
• If not ultimately entered into a computer,
  extremely difficult and cumbersome to summarize
  data for reports and quality monitoring
• What has been learned from other systems, in
  particular TB, that can help in the design of HIV
  care information systems?(see www.tbcindia.org)

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Electronic HMIS Lessons from CAREWare

• Standardized data core for tracking longitudinal
  clinical, service, and social support
  information
• Ability to customize the application without
  programming
• Ability to rapidly generate reports for daily
  patient care and monitoring overall quality of
  care
• While decision support rules currently not built
  into software, patient-specific quality of care
  reports easily generated that are used to monitor
  and manage quality of care-produced before
  patient visit
• Ease of producing required reports

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Getting Data inand Out CAREWare Examples
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Getting Data inand Out CAREWare Examples
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Getting Data inand Out CAREWare Examples
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Getting Data inand Out CAREWare Examples
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Getting Data inand Out CAREWare Examples
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Examples of Clinical Support in CAREWare
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Examples of Clinical Support in CAREWarePatient
Scheduler

• Who has a visit today or this week?
• Clinical summary of expected patients
• Produce reports of missed visits

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CAREWare Limitations

• Lacks a simple one page interface for data entry
  that mirrors a standard clinical encounter in
  typical ARV treatment setting
• Lacks simple alerts and reminders (if used in
  real-time) relies on user running encounter
  reports.
• ButThis should change soon!

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CAREWare Future Developments

• Networkable version (in .NET) that will also
  allow for disconnected clinic sites to export
  data (store and forward )
• Collaboration, such as that promoted by this
  meeting, will clarify essential features to
  develop for international version.
• Collaborate with specific clinical sites to pilot
  test (e.g. in Uganda, South Africa)
• Incorporate HIV clinical decision support
  developed by Columbia University (HIV Tips)

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Focused and Timely Clinical Information

• Caregivers will likely have only a short time to
  spend with each patient. In this setting, how
  can the HMIS help prepare for the clinical
  encounter so that it is focused and informed by
  essential, up to date medical history information
  necessary to make appropriate clinical decisions?
  
• What is feasible given Limited training and
  experience
• Lack of time Overburdened staff
• Lack of other resources

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Getting Data In and Information Out

• Can clinical data be used and retrieved by care
  providers? Onsite, on-time?
• Who will key enter the data?
• Who will have the time/skills to review and use
  the data?
• Can data be transmitted to another (central)
  location where care givers with greater training
  can offer clinical assistance (decision support)
• Provide clinical summaries via some method of
  Telehealth (phone call, email, website) make
  treatment recommendations (either in real-time or
  not) or help establish a longer-term treatment
  plan
• Can data be analyzed centrally to enable quality
  of care management, and support public-health
  decision-making, at the district, provincial or
  national level)?

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Possible Solutions and Clinic FeedbackClinical
Decision Support and Quality Management

• Produce treatment plans prior to patient clinic
  visit. (But how produced/by whom?)
• Focus and tailor the clinical decision support so
  it can be conveyed to the clinical provider and
  the patient clearly, and in a short period of
  time.(Onsite vs. some form of Telehealth)

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Possible Solutions and Clinic FeedbackTechnical
Assistance and Support

• Provide data management support, especially if
  data entry is not occurring in a timely fashion
• Provide data use support to ensure appropriate
  treatment information is getting fed back to the
  clinic site and that its use is understood
  Create benchmarks/ treatment and service goals
• Hire clinical and data consultants (MIS corps?)
  to provide training, periodic oversight Provide
  support to sites with high rates of ARV treatment
  failures (regimen changes) and examine clinic
  process Why is this occurring in this site? What
  aspects of care can be improved? (See Frieden
  and Khatri, Impact of national consultants on
  successful expansion of effective TB control in
  India. Int J Tuberc Lung Dis 2003 7837-41.)