Designing and Implementing
Standardized Clinical Encounter Forms
and Modules to Support HIV Care
Geneva- March 2004
John Milberg, US Dept. of Health and Human
Services, Health Resources and Services
Administration,
HIV/AIDS Bureau, Rockville, MD USA
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 it’s 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
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?
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 information—for WHO, PEPFAR, TGF, etc.
Establishing common standards in data collection and reporting can
reduce burden to providers AND improve capacity to monitor care
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
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).
WHO Chronic Care with ARV Therapy: Translating
Complicated Treatment Protocols into Simple Clinical
Information and HIV Care Delivery Systems
“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).
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. Don’t prescribe EFV in pregnant
women; don’t 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)
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)
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
Getting Data in—and Out: CAREWare Examples
Getting Data in—and Out: CAREWare Examples
Getting Data in—and Out: CAREWare Examples
Getting Data in—and Out: CAREWare Examples
Getting Data in—and Out: CAREWare Examples
Examples of Clinical Support in CAREWare
Examples of Clinical Support in
CAREWare:Patient Scheduler
• Who has a visit today
or this week?
• Clinical summary of
expected patients
• Produce reports of
missed visits
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.
• But…This should change soon!
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)
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
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)?
Possible Solutions and Clinic Feedback:
Clinical 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)
Possible Solutions and Clinic Feedback:
Technical 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; 7:837-41.)