1. Establishing a pediatric family-initiated safety reporting program Quality Forum 2013

2. How do we translate research into action?

3. Formed task force Denise Hudson, BC PSLS Suzanne Steenburgh, Program Manager Tex Kissoon, VP Medical Affairs Pat Gillis, Director Volunteer Resources Laurie Johnson, Quality and Safety leader Tricia McBain, Director, Quality, Safety BCCH & SH Tracie Northway, Strategic Implementation Susan Greig, Partners in care family liaison

4. The problem… More than 9% of children in hospitals in Canada experience an adverse event The risk of having an adverse event was nearly 3-fold higher in academic pediatric centers than in community hospitals Adverse Events Among Children in Canadian Hospitals: The Canadian Paediatric Adverse Events Study Matlow AG, Baker R, et al (2012)

5. How can patients and families help? “When patients and families tell their own stories to members of a clinical care system, the organizational culture begins to reflect patient-centeredness. These stories slowly shape the way clinicians speak, think, and behave toward patients…..” Order from Chaos: Accelerating Care Integration The Lucian Leape Institute (October, 2012)

6. Face-to-face patient and family engagement model, deploying volunteers with a laptop computer to seek the patient and family’s view on safety

7. Patient Reporting for a Safe Environment (PRASE) 5-year project in UK (National Institute of Health Research) Tested telephone line, paper and pencil, face-to-face Patient volunteers collecting data from patients; tools hosted on a tablet personal computer (July 2012) BMC Health Services Research Ward, et al (2011)

8. Great Ormond Street Hospital London, UK Awarded a national grant for SHINE project Recruited 2 dedicated full-time staff Pilot on one ward over the next 15 months Trialing version of “Patient’s View” application

9. Stollery Children’s Hospital Edmonton, AB Interest in implementing similar program Shared tools developed for Patient’s View with clinical quality team at Stollery

11. Go Live! August 15, 2012

12. Method Selected Surgical Unit as pilot site Engaged clinical staff on ward Branded the project Recruited eight volunteers and provided education

13. Process Volunteers engage families Families report safety concerns at the bedside using a laptop and a tested, validated web-based tool Quality Leader reviews reports Staff and leaders use feedback for action planning and quality improvement

14. Was the pilot a success? Volunteer success Organization success – Process measures Family participation rate Validity of reports as safety concerns Usefulness of reports to inform QI efforts Family success – Satisfaction with process Balancing measures

15. Volunteer Success Volunteers report a positive experience where they feel supported and valued and feel they have contributed to safe care at BCCH

16. Volunteers rate their experience:

17. Suggestions for improvement? “…more communication with the charge nurse to let her know the days volunteers are coming…” “A faster and easier to carry tablet (i.e. an iPad).” “…having a list of patients being discharged on hand when you are on the shift…”

18. Evaluation of orientation process:

19. Making a difference for patient safety?

20. Would you recommend this experience?

21. Comments: “I think it is a great way to interact with the families/patients that is different from other volunteer roles because you have a purpose and topic of conversation. It gives great insight into their experience and has made me more empathetic to the patients and families situations at BC Children's Hospital. For those volunteers looking to pursue a career in any sort of health care I feel this is a valuable experience.”

22. Process measure: Family participation rate 65% of shifts available had a volunteer assigned Sept. 10 th – Nov. 19th, 2012: 420 discharges (total) 109 on weekends (no coverage) 311 on weekdays (covered by volunteers) 100/311 families identified by CN as appropriate 3 declined participation 46 sleeping, out of room, bad timing, etc. 51 participated 51% of eligible families participated = 12% of total discharges

23. Process measure: Validity of reports Patient’s View = 76 safety concerns reported 92% (70/76) assessed as valid safety concerns

24. What did patients and families tell us?

26. Medication problems: Do you think a problem with medication or IV fluid occurred? Dose missed? Too much given? Too little given? Incorrect time, rate, route, medicine? Incorrect patient? Insufficient pain medicine? Medication history incorrect?

27. Complications of care: Do you think a complication of care occurred or was stopped before occurring? Procedure or treatment was not followed correctly Test was done incorrectly Poor sterile procedure or care Changes in care made too rapidly

28. Equipment problems: When equipment fails or is not used correctly Equipment failure caused a risk Intravenous or arterial line did not work correctly Equipment was incorrectly used Device was not available when needed Room ill-equipped

29. Miscommunication between staff: When members of the staff give information or receive information from other staff about diagnosis, treatment or care that is inadequate, conflicting or incorrect Information not shared among healthcare providers Test repeated because original was lost or destroyed Documentation was incorrect or incomplete

30. Miscommunication between family and staff: “I think there has been a huge disjoint between myself the parent and the ‘team’. I don’t think I have been kept informed on a number of instances, from a medication being discontinued, to another medication from home being thrown out, to results of tests not being disclosed. I don’t think the different services work well together, and different information gets given by different people. It is all very frustrating and hard to feel confident that things are correct and not being missed.”

31. Other problems reported: When any action, not previously described, fails or is the incorrect action. Confidentiality not respected Not given due respect Verbally assaulted Physically assaulted

32. Please describe anything you noticed staff or the hospital doing to help promote safe care

34. Family satisfaction with process of being asked about safety concerns: “This conversation is one example of the unbelievable level of engagement with families within BC Children’s Hospital.” “One mother actually thanked me after doing the survey because she found it very therapeutic. I have never had a parent turn me down or not be appreciative for what we do.” (Patient’s View volunteer) “I am a business man and have been doing surveys with customers for years. It is excellent you are initiating this at Children's; I believe it will make care safer. Thank you!”

35. QI work informed by Patient’s View In progress: Medication Reconciliation and family involvement in transfer of care Update MRSA screening policy Standardize process for obtaining urine for R&M Standardize post-op pain control for tonsillectomy/ adenoidectomy Revisit process for calling families back to bedside for procedures/rounds Communication opportunities for staff

36. Balancing measures: Number of spurious reports = 0 Number of reports not related to safety = 6 – 6 reports were complaints related to “hotel” aspects (e.g. food quality, room cleanliness) Ward or risk management resources needed for individual follow-up on family reports = Minimal – 51 reports x 5 minutes review = 4.25 hours Number of volunteers reporting they cannot meet the expectations of the role = 0

37. Lessons learned: Families are highly motivated to report and happy to be invited to give feedback on patient safety Soliciting reports within 48 hours of discharge Web-based reporter form and laptop Trained volunteers Feedback informs/validates quality improvement work Patient engagement is essential Volunteers benefit from a buddy shift

38. Next steps? Spread to other units Utilize tablets/iPads/apps Engage families from all ethnicities and cultures Make “Patient’s View” application available on the Internet Close the loop with families; results on a web site Engage families in improvement projects

39. Please Contact: Denise Hudson Quality Leader, BC PSLS 604-877-6427 dhudson@cw.bc.ca