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ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes.

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Presentation on theme: "ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes."— Presentation transcript:

1 ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

2 Global Health Policy Summit 2012 Emerging theme… Patients must come off the sidelines and onto the pitch. 2

3 Why engage and empower patients?  Engaged and empowered patients experience a safer, higher quality healthcare experience.  Fiscal pressure on system is increasing (costs, demand incr.) and payments often tied to safety and quality (patients are a free resource!)  Harm rates unacceptable. Unexplored, promising opportunities. Patient cares the most, knows his/her patient journey better than anyone and is an expert who must be on the team. 3

4 Barriers to Engagement  Attitudes of providers. Let us in!!  Lack of awareness of safety risks. (willing when aware- eg. blood transfusion safety)  Belief that contributions not valued  Lack of medical knowledge and confidence.  Fear of showing disrespect- impact on care.  Knowledge on how to participate. 4

5 Tools and Ways to Engage and Empower  WHO- Patient Safety Champions. Led by Margaret Murphy, “we are the grit in the oyster that produces the pearl.” 254 champions in 52 countries Tell stories, sit on committees, impact policy, affect change 5

6 Patients for Patient Safety Workshops

7 Tools and Ways to Engage and Empower  Patient and Family Advisory Councils. Valuable resource for hospital Training offered by many organizations including patient-run organizations Webinars allow for support and training everywhere 7

8 Tools and Ways to Engage and Empower Open, continuous access to medical records. 3 centers, 105 PCPs, almost 14,000 patients 78% increase in adherence to meds Minimal impact on doctors 8

9 Tools and Ways to Engage and Empower White board in patient room for communication 9

10 Tools and Ways to Engage and Empower Include patients/caregivers in rounds, transfers and discharge planning. 10

11 Tools and Ways to Engage and Empower: Initiate “condition H” call for help program for patients and caregivers -Increased safety, not misused. 11

12 Tools and Ways to Engage and Empower Videos teach patients how to contribute to safety eg. hand hygiene. Educational materials related to procedure and to the associated risks. (Mass. PFACs- #1 issue was for information) Encourage and participate in shared decision- making. (Framework being developed) 12

13 Engagement and Empowerment in Action! With appreciation for the courage of providers who partnered with us. 13

14 Engagement and Empowerment in Action! Sue Sheridan’s son developed Kernicterus after his newborn jaundice was ignored. Sue, along with 8 determined moms created and implemented a plan to eradicate Kernicterus. 14

15 Engagement and Empowerment in Action! Magwa Metwally- raised $$$$ for new operating rooms but withheld the funds until the surgeons pledged to use the Safe Surgery Checklist and practice infection control. She says, “this was no easy task.” 15

16 Engagement and Empowerment in Action! 16 Julia Hallisy, Martine Ehrenclou and Karen Curtiss wrote books to empower patients to protect themselves from harm after experiencing harm.

17 Engagement and Empowerment in Action! 17 After my daughter received inappropriate medical care, I undertook research with two physicians to obtain the perspectives of parents of children with a rare genetic condition whose experience was not in the literature. Janvier A, Farlow B, Wilfond BS.The experience of families with children with trisomy 13 and 18 in social networks. Pediatrics Aug;130(2): doi: /peds

18 Engagement and Empowerment in Action! 18 Johanna Trimble saved her mother-in-law from an adverse medication reaction. She is now dedicated to created awareness about seniors and medication reactions.

19 Engagement and Empowerment in Action! 19 Lorretta Evans’s son Colin died from systemic neglect when assumptions were made about which doctor was in charge of his care. She changed hospital protocols to prevent a re-occurrence.

20 Engagement and Empowerment in Action! 20 Jeanine Thomas created legislation and an international network to reduce MRSA infection after acquiring MRSA from a simple procedure.

21 Engagement and Empowerment in Action! Sorrel King lost her daughter Josie as a result of fluid and medication errors related to a central line infection. She started a patient safety foundation and her story was a catalyst for the development of the central line infection checklist. 21

22 Engagement and Empowerment in Action! 22 Tania Marin suffered neglect and cruelty when she miscarried her daughter Sophia at 18 weeks gestation in the ER. Existing protocols dictated that only pregnancies past 20 weeks were to be admitted to the OB ward. After 2 years of effort, Tania changed the Policy. The hospital created a memorial wall for Sophia and other unborn babies who died.

23 Engagement and Empowerment in Action! 23 Peter Walsh founded a group that provides free support to 3000 people a year who suffer a bad medical experience.

24 Engagement and Empowerment in Action! 24  Mcheck Tool: developed by patients, for patients in collaboration with WHO for women with limited access to timely care.  Paper-based, checklist-style tool used with mobile device for support  Tool reminds women to evaluate themselves and their newborn for major causes of morbidity mortality

25 Engagement and Empowerment in Action! 25 Helen Haskell’s son, Lewis, bled to death following elective surgery. Everyone missed the signs of peril and disregarded the families pleas for help. Helen started, “Mothers Against Medical Errors.”

26 Let us in! Patients and families are capable and motivated. By engaging and empowering us, we can work together to ensure a better, safer medical system for everyone. Thank you! 26

27 Resources: Videos  E-patient Dave Bronkhart provides insight and inspiration into how patients can become empowered through information and partner with providers.  Dr. Brian Goldman provides moving insight into the physician’s perspective of making mistakes. ut_that.html  Dr. Joseph Cafazzo provides a glimpse into promising technology that reveals incredible opportunities for the future. 27

28 Resources: Videos  Patient story videos from Patients for Patient Safety Canada and-Stories.aspx  Sue Sheridan speaks about how she and 8 moms collaborated to eradicate kernicterus 28

29 Relevant Resources: Published Articles  Flink M, Öhlén G, Hansagi H, Barach P, Olsson M. Beliefs and experiences can influence patient participation in handover between primary and secondary care--a qualitative study of patient perspectives. BMJ Qual Saf Dec;21 Suppl 1:i doi: /bmjqs  Groene O, Klazinga N, Wagner C, Arah OA, Thompson A, Bruneau C, Suñol R; Deepening our Understanding of Quality Improvement in Europe Research Project. Investigating organizational quality improvement systems, patient empowerment, organizational culture, professional involvement and the quality of care in European hospitals: the 'Deepening our Understanding of Quality Improvement in Europe (DUQuE)' project. BMC Health Serv Res Sep 24;10:281. doi: /  Jane K Ward, Rosemary RC McEachan, Rebecca Lawton, Gerry Armitage, Ian Watt, John Wright. Patient involvement in patient safety: Protocol for developing an intervention using patient reports of organisational safety and patient incident reporting. BMC Health Serv Res. 2011; 11: 130. Published online 2011 May 27. doi: /  McGuckin M, Storr J, Longtin Y, Allegranzi B, Pittet D Patient empowerment and multimodal hand hygiene promotion: a win-win strategy. Am J Med Qual Jan-Feb;26(1):10-7. doi: /

30 Relevant Resources: Published Articles  Davis RE, Pinto A, Sevdalis N, Vincent C, Massey R, Darzi A. Patients' and health care professionals' attitudes towards the PINK patient safety video.J Eval Clin Pract. Aug;18(4): doi: /j x  Garcia-Williams A, Brinsley-Rainisch K, Schillie S, Sinkowitz-Cochran R. To ask or not to ask?: The results of a formative assessment of a video empowering patients to ask their health care providers to perform hand hygiene. J Patient Saf Jun;6(2):80-5. doi: /PTS.0b013e3181cb43c9.  Holzmueller CG, Wu AW, Pronovost PJ. A framework for encouraging patient engagement in medical decision making. J Patient Saf Dec;8(4): doi: /PTS.0b013e318267c56e.  Doherty C, Stavropoulou C. Patients' willingness and ability to participate actively in the reduction of clinical errors: a systematic literature review. Soc Sci Med Jul;75(2): doi: /j.socscimed Epub 2012 Apr 13  Davis R, Murphy MF, Sud A, Noel S, Moss R, Asgheddi M, Abdur-Rahman I, Vincent C. Patient involvement in blood transfusion safety: patients' and healthcare professionals' perspective. Transfus Med Aug;22(4): doi: /j x.  30

31 Relevant Resources: Published Articles  Davis RE, Sevdalis N, Jacklin R, Vincent CA. An examination of opportunities for the active patient in improving patient safety. J Patient Saf Mar;8(1): doi: /PTS.0b013e31823cba94.  Davis RE, Sevdalis N, Pinto A, Darzi A, Vincent CA. Patients' attitudes towards patient involvement in safety interventions: results of two exploratory studies. Health Expect Dec 12. doi: /j x  Birks Y, Hall J, McCaughan D, Peat M, Watt I. Promoting patient involvement in safety initiatives. Nurs Manag (Harrow) Apr;18(1):  Hovey RB, Morck A, Nettleton S, Robin S, Bullis D, Findlay A, Massfeller H. Partners in our care: patient safety from a patient perspective. Qual Saf Health Care Dec;19(6):e59. doi: /qshc  Entwistle VA, McCaughan D, Watt IS, Birks Y, Hall J, Peat M, Williams B, Wright J; Patient Involvement in Patient Safety Group. Speaking up about safety concerns: multi-setting qualitative study of patients' views and experiences. Qual Saf Health Care Dec;19(6):e33. doi: /qshc

32 Relevant Resources: Published Articles  Davis RE, Jacklin R, Sevdalis N, Vincent CA. Patient involvement in patient safety: what factors influence patient participation and engagement? Health Expect Sep;10(3):  Longtin Y, Sax H, Leape LL, Sheridan SE, Donaldson L, Pittet D. Patient participation: current knowledge and applicability to patient safety.Mayo Clin Proc Jan;85(1): doi: /mcp  Neeman N, Isaac T, Leveille S, Dimonda C, Shin JY, Aronson MD, Freedman SD. Improving doctor-patient communication in the outpatient setting using a facilitation tool: a preliminary study. Improving doctor-patient communication in the outpatient setting using a facilitation tool: a preliminary study. 32

33 Resources: Patient Groups (a sample of many that exist) Patients for Patient Safety Canada Directory of patient groups and advocates (North America) Patient Groups in the UK International Alliance of Patient Organizations 33


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