IOM Workshop on Standards for Clinical Practice Guidelines January 11, 2010

1. IOM Workshop on Standards for Clinical Practice GuidelinesJanuary 11, 2010 Presentation to Committee on Standards for Developing Trustworthy CPGs Karen KellyThomas, PhD, RN, FAAN CEO National Association of Pediatric Nurse Practitioners (NAPNAP)

2. Scope of presentation/perspective • NAPNAP Healthy Eating and Activity Together (HEATsm) Program and CPG • NAPNAP Keep Yourself/Your Children Safe and Secure (KYSS sm) Program and outcomes • AWHONN RBP Program and projects • 1996-2003 • Reference List for 4 projects • Research and Development in 4 hospitals • 1975-1996

3. Bernadette Melnyk, PhD, RN, CPNP/NPP - ASUEvidence-based Practice in Nursing and Healthcare • Melnyk et al Seven Steps • Step 0 - Cultivate a spirit of inquiry • Step 1 - Ask clinical question in PICOT format (population, area of interest, comparison intervention or group, outcome, time) • Step 2 - Search for the best evidence • Step 3 - Critically appraise the evidence • Step 4 – Integrate the evidence with clinical expertise and patient preferences and values • Step 5 – Evaluate the outcomes of the practice decisions or changes based on evidence • Step 6 – Disseminate the result • Other models in use i.e. Titler/Iowa; Stevens/UTHSA

4. The biggest challenges facing developers todayConfessions of a contingency theory based and pragmatic CEO • Finding right people, time and money; learning up • Determining clinical discipline and practice specificity • Deciding to develop, adopt, endorse, adapt or not • Developing trust, • Recognizing competition and need for ownership • Measuring uptake and claiming results of implementation • Branding, creative packaging and access for clinician users • Participating in the relentless quest for sustainability or barbecuing a sacred cow • Managing fear of the unknown and interfaces necessary • EHR, clinical decision support systems • Translation of comparative effective research • Developing CPGs that consider availability of health information technology and payment modes

5. Within our known healthcare universe, environment, systems, and contexts within • Looming EHRs ‘meaningfully used’ • Principles of transparency • Knowledge of performance measures • Knowledge of gaps and limitations • Political, science and human communities • The activities as forethought • Within knowledge that stopping is harder than starting • Within core of truth of best practice universe

6. Yet knowing life feels more like a gyroscope teetering toward more knowledge and stronger trustNever trust the teller. Trust the tale.(D.H. Lawrence)

7. What do we do when scientific evidence is absent or poor?Admit it and move ahead

8. Reconciling Differences • Agree with Pawlson (2009) definition: CPGs are evidence based statements of optimal (‘best’) practices • Value IOM (1990) definition: Clinical practice guidelines are systematically developed statements to assist the practitioner and patient decisions about appropriate health care for specific clinical circumstances • Use a systematic process • Empower science teams to decide • Trust spirit of volunteer commitment • Trust clinical judgment of expert and experienced clinicians (and intuition…with recognition)

9. Reconciling disagreements • Select a schema to appraise evidence quality and stick to it • Avoid every impulse to create another schema or scoring method (82+ is enough!) • Encourage lusty debate that informs all team members and others I think we may safely trust a good deal more than we do (Emerson)

10. How we accommodate guidelines to subgroups whose treatment outcomes may differ from ‘average’ patient • Pediatric population as primary group • ‘Accommodation’ as standard in well child visits, anticipatory guidance, and EPSDT • Body of knowledge about children with special healthcare needs • AHRQ draft Core Set of Child Healthcare Quality Measures for Medicaid and CHIP Programs – NAPNAP involvement and public comments (March1, 2010)

11. Other important challenges • Child-focused interdisciplinary guidelines that identify contributions of different providers providing same care • Recognition of child’s healthcare home and multiple primary healthcare providers’ scope of practice • Recognition of parent as primary health and care provider • Quest for integrated guidelines – provider inclusive • ASLA • AAP/AAFP • ADA • And who/how many others • CPGs that work in urban, suburban and rural settings • Culturally appropriate CPGs

12. NAPNAP recommendations for CPG Guideline Panel Membership • Must beProvider inclusive • Balance membership of • diverse clinical experts • Methodologists • parent/consumers • Consider including an interpretive-hermeneutic researcher

13. Managing ‘nattering nabobs of negativism’ Safire for Agnew

14. Consider • Methods for selecting recommendations to apply CQI measures – identified as part of process, tag and prioritize, challenge the best testers with incentives, continuously define clinical effectiveness measures • Available rating/assessment tools – rank those available, recognize patterns, be pragmatic, polish the ‘tarnished silver’, don’t throw babe out with bathwater • Keep using the words credible and trust - it goes both and all ways • Development of economics of it all and true stakeholders of it all

15. Administrative, accreditation, or legal approaches that might improve the quality of CPGs • Create and disseminate a briefing for stakeholder administrators that will inform • Promote AHRQ Guideline Clearing House • If GLIA (Implementability Assessment) has validity and reliability, push out to associations who develop guidelines with care to include developers of a few and developers of many of diverse healthcare providers • Disseminate AVUL (ambiguous, vague, underspecified language) as strategy for guideline developers • Reduce the size of the ‘black box’ of electronic guideline knowledge representation • Do not develop an accreditation process for a few; if developed process must be applicable to all developers

16. Harmonizing and converging guidelines • Bring diverse groups together then send them out • Expand opportunities for professional societies to develop and become PBRNs as underframe • Call the ‘best of the best’ to action • Be careful what you ask for Other characteristics of guideline standards that are important I may not be perfect, but parts of me are excellent (Ashleigh Brilliant, 1964)

17. Promoting greater use of guidelines • Research utilization, knowledge utilization, evidence based practice (EBP research), research-based practice, translation research…and on • Use decades of acquired knowledge to create more champion opportunities for more developers to come together then push out • Go forth and disseminate • Pay attention to the need for the proverbial resources • Anyone using BridgeWiz (Shiffman, Nov 9, 2009 mtg presentation)