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

ISQua Webinar January 24, 2013

Barbara Farlow, Honorary Patient Perspective Board member

Let us in! Engaging and Empowering Patient for Better Outcomes

Page 2: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Global Health Policy Summit 2012

Emerging theme…

Patients must come off the sidelines and onto the pitch.

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Page 3: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

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.

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Page 4: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

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.

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Page 5: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

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

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Page 6: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Patients for Patient Safety Workshops

Page 7: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

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

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Page 8: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

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

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Page 9: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Tools and Ways to Engage and Empower

White board in patient room for communication

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Page 10: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Tools and Ways to Engage and Empower

Include patients/caregivers in rounds, transfers and discharge planning.

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Page 11: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Tools and Ways to Engage and Empower:

Initiate “condition H”

call for help program for

patients and caregivers

-Increased safety, not

misused.

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Page 12: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

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)

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Page 13: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Engagement and Empowerment

in Action!

With appreciation for the courage of providers who partnered with us.

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Page 14: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

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.

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Page 15: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

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.”

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Page 16: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Engagement and Empowerment in Action!

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Julia Hallisy, Martine Ehrenclou and Karen Curtiss wrote books to empower patients to protect themselves from harm after experiencing harm.

Page 17: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Engagement and Empowerment in Action!

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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. 2012 Aug;130(2):293-8. doi: 10.1542/peds.2012-0151

Page 18: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Engagement and Empowerment in Action!

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

Page 19: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Engagement and Empowerment in Action!

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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.

Page 20: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Engagement and Empowerment in Action!

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Jeanine Thomas created legislation and an international network to reduce MRSA infection after acquiring MRSA from a simple procedure.

Page 21: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

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.

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Page 22: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Engagement and Empowerment in Action!

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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 wallfor Sophia and other unborn babies who died.

Page 23: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Engagement and Empowerment in Action!

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Peter Walsh founded a group that provides free support to 3000 people a year who suffer a bad medical experience.

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

Engagement and Empowerment in Action!

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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

Page 25: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Engagement and Empowerment in Action!

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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, “MothersAgainst Medical Errors.”

Page 26: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

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!

[email protected]

Page 27: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Resources: Videos

E-patient Dave Bronkhart provides insight and inspiration into how patients can become empowered through information and partner with providers.http://www.ted.com/talks/lang/en/dave_debronkart_meet_e_patient_dave.html

Dr. Brian Goldman provides moving insight into the physician’s perspective of making mistakes.http://www.ted.com/talks/brian_goldman_doctors_make_mistakes_can_we_talk_about_that.html

Dr. Joseph Cafazzo provides a glimpse into promising technology that reveals incredible opportunities for the future.http://humanfactors.ca/news/2012/11/tedx-toronto-patient-self-care/

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Page 28: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Resources: Videos

Patient story videos from Patients for Patient Safety Canadahttp://www.patientsforpatientsafety.ca/English/Resources/Pages/Member-Videos-and-Stories.aspx

Sue Sheridan speaks about how she and 8 moms collaborated to eradicate kernicterus http://www.youtube.com/watch?v=8ToEBC5Ta9s

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Page 29: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

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. 2012 Dec;21 Suppl 1:i76-83. doi: 10.1136/bmjqs-2012-001179.

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. 2010 Sep 24;10:281. doi: 10.1186/1472-6963-10-281.

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: 10.1186/1472-6963-11-130

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. 2011 Jan-Feb;26(1):10-7. doi: 10.1177/1062860610373138.

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Page 30: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

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):848-53. doi: 10.1111/j.1365-2753.2011.01688.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. 2010 Jun;6(2):80-5. doi: 10.1097/PTS.0b013e3181cb43c9.

Holzmueller CG, Wu AW, Pronovost PJ. A framework for encouraging patient engagement in medical decision making. J Patient Saf. 2012 Dec;8(4):161-4. doi: 10.1097/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. 2012 Jul;75(2):257-63. doi: 10.1016/j.socscimed.2012.02.056. 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. 2012 Aug;22(4):251-6. doi: 10.1111/j.1365-3148.2012.01149.x.

   

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Page 31: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

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. 2012 Mar;8(1):36-43. doi: 10.1097/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. 2011 Dec 12. doi: 10.1111/j.1369-7625.2011.00725.x

Birks Y, Hall J, McCaughan D, Peat M, Watt I. Promoting patient involvement in safety initiatives. Nurs Manag (Harrow). 2011 Apr;18(1):16-20.

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. 2010 Dec;19(6):e59. doi: 10.1136/qshc.2008.030908.

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. 2010 Dec;19(6):e33. doi: 10.1136/qshc.2009.039743.

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Page 32: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

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. 2007 Sep;10(3):259-67.

Longtin Y, Sax H, Leape LL, Sheridan SE, Donaldson L, Pittet D. Patient participation: current knowledge and applicability to patient safety.Mayo Clin Proc. 2010 Jan;85(1):53-62. doi: 10.4065/mcp.2009.0248.

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.

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Page 33: ISQua Webinar January 24, 2013 Barbara Farlow, Honorary Patient Perspective Board member Let us in! Engaging and Empowering Patient for Better Outcomes

Resources: Patient Groups (a sample of many that exist)

Patients for Patient Safety Canada

http://www.patientsforpatientsafety.ca Directory of patient groups and advocates (North

America)

 www.advocatedirectory.org Patient Groups in the UK

http://www.curethenhs.co.uk/ www.avma.org.uk International Alliance of Patient Organizations

http://www.patientsorganizations.org/

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