Let us in! Engaging and Empowering
Patient for Better Outcomes
ISQua Webinar January 24, 2013
Barbara Farlow, Honorary Patient Perspective Board
member
Global Health Policy Summit 2012
Emerging theme…
Patients must come off the sidelines
and onto the pitch.
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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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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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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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Patients for Patient Safety
Workshops
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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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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Tools and Ways to Engage and Empower
White board in patient room for communication
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Tools and Ways to Engage and Empower
Include patients/caregivers in rounds, transfers
and discharge planning.
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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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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 decisionmaking. (Framework being developed)
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Engagement and Empowerment
in Action!
With appreciation for the courage of
providers who partnered with us.
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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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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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Engagement and Empowerment in Action!
Julia Hallisy, Martine Ehrenclou and Karen Curtiss
wrote books to empower patients to protect
themselves from harm after experiencing harm.
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Engagement and Empowerment in Action!
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
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Engagement and Empowerment in Action!
Johanna Trimble saved her mother-in-law from
an adverse medication reaction. She is now
dedicated to created awareness about seniors
and medication reactions.
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Engagement and Empowerment in Action!
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.
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Engagement and Empowerment in Action!
Jeanine Thomas created legislation
and an international network to
reduce MRSA infection after
acquiring MRSA from a simple
procedure.
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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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Engagement and Empowerment in Action!
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.
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Engagement and Empowerment in Action!
Peter Walsh founded a group that provides free support to
3000 people a year who suffer a bad medical experience.
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Engagement and Empowerment in Action!
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

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Engagement and Empowerment in Action!
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.”
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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!
b_farlow@hotmail.com
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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_abo
ut_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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Resources: Videos

Patient story videos from Patients for Patient Safety Canada
http://www.patientsforpatientsafety.ca/English/Resources/Pages/Member-Videosand-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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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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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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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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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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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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