1
The Role of the Patient in Safety

• Six Recommendations
• Dan Ford
• The Seventh Annual Quality Colloquium Harvard
  University
• August 19, 2008

2
OVERVIEW

• The Ford family medical error story puts a face
  on unexpected outcomes
• Highlights of ideas and recommendations, from the
  Ford family and others experiences
• We are all consumers as patients and family
  members encourage thinking as consumers
• We should all be active patient safety advocates,
  as providers of services and products, as well as
  consumers

3
RECOMMENDATIONS

• 1) Lets be responsible providers of information
• 2) Lets ask questions and speak up
• 3) Lets be expectant and presumptuous
• 4) Lets be encouraging and supportive
• 5) Lets participate with providers and become
  involved
• 6) Lets encourage an openness to other new ideas

4
LETS BE RESPONSIBLE PROVIDERS OF INFORMATION

• As patients, lets know, document and update our
  medical history, active medications and our
  allergies.
• Understand that medication improper usage,
  over-use, misuse and hand-offs are huge source
  of medication errors worldwide.

5
LETS BE RESPONSIBLE PROVIDERS OF INFORMATION

• Active participation implies sharing information
  and opinions, joint problem solving and joint
  responsibility. (Patrice Spath)
• Bring literacy issues to attention of providers.
  In the U.S., over 90 million have literacy
  challenges.
• Patients provide a second set of eyes. (Merrilyn
  Walton, Australia)

6
LETS ASK QUESTIONS AND SPEAK UP

• Speak Up program. Joint Commission suggests
  that patients self-educate about diagnosis,
  medical tests, treatment plans.
• Find out who we can talk with regarding
  anxieties, concerns about our care. Tell someone
  to stop if it doesnt feel right.

7
LETS ASK QUESTIONS AND SPEAK UP

• Dont be intimidated.
• Doctor, did you wash your hands?
• Ask about anesthesia, IV drips, special tests,
  x-rays with dyes, etc.
• Insist on full disclosure. We have a right to
  know exactly what happens to our body. Nothing
  about me without me.

8
LETS ASK QUESTIONS AND SPEAK UP

• When visiting a doctor or hospital, invite a
  family member, friend, patient advocate,
  navigator or vigilant partner to help.
• Help those who have no such advocate.
• Ask for medication sheets, help caregivers
  cross-check medications, receive tips about safe
  medication practices.

9
LETS ASK QUESTIONS AND SPEAK UP

• Find out how infections occur, early symptoms and
  avoiding, treatment and prevention plans.
• We can monitor for compliance with safe
  practices, including medication administration,
  AFTER our patient identification is verified.

10
LETS ASK QUESTIONS AND SPEAK UP

• Dont be afraid to beg and be persistent. (Dale
  Micalizzi, New York)
• We can be too easily intimidated by providers
  from actively participating in our own care --
  encourage and work on our right to question and
  to challenge.
• Again.speak up!

11
LETS BE EXPECTANT AND PRESUMPTUOUS

• The patient is the center of the health care
  team.
• We are all consumers, as patients or family
  members, at some point.
• Picker Institute Europe suggests that patients
  desire respect .

12
LETS BE EXPECTANT AND PRESUMPTUOUS

• .Respect for our values, preferences and
  expressed needs, information and education,
  access to care, emotional support, involvement of
  family and friends, continuity and for
  transition, physical comfort and coordination.
• We should expect these to be honored, at all
  times.
• Patients can become the first line of defense,
  against misadventures and unsafe situations.
  (Merrilyn Walton, Australia)

13
LETS BE EXPECTANT AND PRESUMPTUOUS

• Expect our privacy and confidentiality be honored
  at all times
• Expect current, evidenced-based medicine, unless
  logical and convincing reasons for other
  approaches
• If a mistake happens without our knowledge, even
  without harm, we should be told -- ethical thing
  to do.

14
LETS BE EXPECTANT AND PRESUMPTUOUS

• OUTRAGED by too many continuing medical errors
  lets work with providers to eliminate them.
• Expect candor, honesty, disclosure and
  transparency to be the norm.
• No longer accept being treated as numbers,
  statistics, nameless.
• We are people with families, victims, survivors
  and change agents
• Lets expect listening to be the norm when
  missing, is at the heart of many problems.

15
LETS BE EXPECTANT AND PRESUMPTUOUS

• Accountability by providers to patients may help
  to balance the unequal distribution of power
  between a physician and injured patient. (Nancy
  Berlinger)
• Accountability is the lynchpin in the
  relationship.
• Expect and encourage providers to do the right
  thing, when things go wrong - including taking
  responsibility for their own actions.

16
LETS BE EXPECTANT AND PRESUMPTUOUS

• Hurting patients are not interested in hearing
  about hospitals protecting assets. Lack of
  respect.
• We have a need to be heard. There is a need for
  closure including an honest and candid
  understanding of what happened, apologies, what
  is being done for prevention in the future.

17
LETS BE ENCOURAGING AND SUPPORTIVE

• Lets encourage providers to become patient
  centric, rather than physician centric.
• Providers can better plan and deliver care, and
  we can achieve better outcomes
• by truly partnering with patients and families
• by involving us in decisions about our own care
• by gaining the benefit of our help and insights
• By having in-depth conversations with patients,
  from the beginning of the relationship and in the
  hospital
• Hospitals can also improve staff satisfaction.

18
LETS BE ENCOURAGING AND SUPPORTIVE

• Patient and Family Advisory Councils are being
  formed -- I chaired the Patient Role in Safety
  Sub-Committee of AzHHA Patient Safety Steering
  Committee.
• Encourage providers to tell the truth, when
  unexpected outcomes happen, and to apologize.
• Culture has to start at the top of every
  hospital.
• Needs to be the right spirit and a fire in our
  belly for telling the truth.
• Even when telling the truth and being candid
  takes us out of our comfort zone.

19
LETS BE ENCOURAGING AND SUPPORTIVE

• The bedside nurse can still be the patients best
  advocate.
• Patient loads, stress and human frailties get in
  the way,
• Lets remember and enhance the nurse advocacy and
  partnering role.
• Lets assure this is taught in training patient
  centered language and behavior

20
LETS BE ENCOURAGING AND SUPPORTIVE

• Lucian Leape from Harvard suggests Lets help
  the clinician do the right thing, rather than
  chastising them for not.
• Encourage providers to understand the Deer in
  the Headlights Syndrome when unexpected outcomes
  happen.
• Patients and families are suffering terribly
  following these events,
• We are in shock devastated in many ways.

21
LETS BE ENCOURAGING AND SUPPORTIVE

• Providers also go through Deer in the
  Headlights syndrome, when experiencing
  unexpected outcomes.
• Physicians and nurses and others did not wake up
  this morning, with the intent or anticipation of
  hurting someone today.
• They are also often in shock or grief.
• Need support for all.

22
LETS BE ENCOURAGING AND SUPPORTIVE

• Lets encourage providers to never forget the
  HUMAN side.
• Role model that as patients and family members.
• Every patient experience requires COMPASSION and
  empathy.
• Significant efforts are being made to deal with
  the clinical and system pieces. But.we find the
  human part to be awkward.
• Lets encourage, support providers to be team
  players that all be good wingmen

23
LETS BE ENCOURAGING AND SUPPORTIVE

• ARROGANCE, parental attitudes, turf battles by
  some clinicians continue stymies progress and
  change in delivering care
• All are human beings, w/human needs patients,
  family members and staff respect everyones
  dignity and roles.
• Cold and unfeeling attitudes build barriers.
  Genuine listening will help break them down.
• Its about mutual respect communications and
  teamwork need to rebuild trust.

24
LETS BE ENCOURAGING AND SUPPORTIVE

• Empathize with providers that involving patients
  and families is not easy. This is a journey in a
  new direction.
• Understand that engagement is key, as well as a
  new learning experience.
• Humbled, supportive and complimentary of all of
  the good progress being made, even as providers
  weary from all now on their plates.
• Respect and encourage champions who work
  tirelessly for change many are here today

25
LETS PARTICIPATE WITH PROVIDERS AND BECOME
INVOLVED

• Lets volunteer to participate on provider
  patient safety, quality and patient-centered care
  boards and committees, as well as self help
  groups such as MITSS here in Boston (Linda
  Kenney)
• Dana Farber Cancer Institute in Boston involves
  patients and family members on virtually every
  committee and board in the hospital.
• Our voices, as patients and consumers, can be
  heard in many venues.

26
LETS PARTICIPATE WITH PROVIDERS AND BECOME
INVOLVED

• In my committee work, I remind providers that I
  am not a clinician. Typical response We have
  enough clinical experts around the table. We
  want to hear your voice and ideas, as a consumer.
  Question us, ask us, encourage us.
• Many people like me would love to be positive
  and constructive committee and advisory board
  members eager to serve, learn and be good
  ambassadors.

27
LETS PARTICIPATE WITH PROVIDERS AND BECOME
INVOLVED

• Patients and family members worldwide are
  becoming involved in consumer and patient
  advocate organizations.
• Desire is to PARTNER to work cooperatively/const
  ructively with providers regarding patient and
  family-centered care, as well as patient safety
  and the aftermath of medical errors.

28
LETS PARTICIPATE WITH PROVIDERS AND BECOME
INVOLVED

• May, 2006, Patients for Patient Safety Workshop
  in San Francisco, sponsored by WHO/PAHO.
• 54 participants from South America, Mexico,
  Canada and United States profound experience
  followed the inaugural WHO workshop in London in
  December, 2005, with 24 participants.
• Similar Workshop in Chicago in June, 2008
  consumers and providers Chicago area focus.

29
LETS PARTICIPATE WITH PROVIDERS AND BECOME
INVOLVED

• STORYTELLING by patients and families
  presentations, personal contact, in writing.
• Important to help leadership spawn change.
• Injured patients and those who have lost loved
  ones to medical errors can share their stories
• Providers need to hear are inviting these
  stories catalyst for causing change.
• Providers may weary of the stories. WE HOPE NOT!

30
LETS PARTICIPATE WITH PROVIDERS AND BECOME
INVOLVED

• Lets help the healing process, for all
  patients, families and providers.
• Rounding some organizations are now inviting
  patients and families to take part in
  multi-disciplinary rounds and asking for their
  comments.

31
LETS ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS

• Medical records assure that patients and
  families have access to the entire medical record
  spirit of information availability and
  transparency.
• Incorporate and invite input from patients and
  families directly into medical and health
  records.
• Not to change what is written by providers, but.
  
• To supplement. We should be able to provide our
  own notes in the record.

32
LETS ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS

• Partnership in the healing process is absolutely
  essential.
• Dr. Saul Weingart and colleagues at Dana Farber
  and Harvard University as well as others
  nationally, are conducting substantive studies on
  patient and family involvement.

33
LETS ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS

• Sarah Lawrence College in New York offers a
  masters degree in patient advocacy.
• RCAs involve patients/family when debriefing
  unexpected outcomes and problem solving.
• Invite patients and families to participate in
  RCAs, and other clinical investigations not
  all will want to participate, nor should be.
• Do away with classical CYA attitudes.
• Offensive to be left out of discussions about
  what really happened it is our body.

34
LETS ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS

• RETICENCE legal considerations, tradition,
  change, peer review, role behaviors, egos and
  other human behaviors.
• Telling the TRUTH is the right thing to do.
  Openness will enhance learning all around will
  decrease, rather than increase, litigation.
• Continued tension between the fear of litigation
  and transparency/telling the truth.

35
LETS ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS

• Instead of a divisive spirit, with on-going care
  and when unexpected outcomes happen, lets be
  PEACEMAKERS.
• But the wisdom that comes from heaven is first
  of all pure then peace-loving, considerate,
  submissive, full of mercy and good fruit,
  impartial and sincere. Peacemakers who sow in
  peace raise a harvest of righteousness. James
  317-18
• We are each human beings need each other.
• Know the Bible is not the source of everyones
  faith, but the spirit of this is universal.

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This is why I do what I do
Grandpop and Jadyn April 2008
37
Dan Ford Biography

• Spouse suffered permanent brain damage/short-term
  memory loss because of medical errors in an
  Illinois hospital a patient and patient safety
  advocate.
• Health Care Executive Search Consultant with
  Furst Group, Phoenix, Arizona concerned about
  how all provider executive candidates view the
  patient experience.
• www.furstgroup.com
• dford_at_furstgroup.com
• 520.548.3339 (cell)