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Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance for Patient Safety

Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

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Page 1: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

Safety Data for Safer Care

From the Patient Perspective

Margaret Murphy

Patient Advocate

Member, Patient for Patient Safety Steering Group

WHO World Alliance for Patient Safety

Page 2: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

INTRODUCTION

• Personal Background & Motivation

• Learning from the Patient Experience – the mismatch between the actual and the ideal

• Non-compliance

- when guidelines, processes and best

practices are not observed

• Quality communication

• Effective communication

• Data collection in relation to the above

- data validation;

- confirming the reliability of sources

Page 3: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

Official Data : An Example

Page 4: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

Kevin The Person

Page 5: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

8 Days

before

admission

to

hospital 0

20

40

60

80

100

1stQtr

3rdQtr

East

West

North

Page 6: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

The Questions

Simple questions…..

Why did Kevin die?

What went wrong?

- we need to know and we need to understand -

Page 7: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

“It is very clear to me that Kevin

Murphy should not have died.”

Judge Roderick Murphy at High Court RulingMay 2004

Court Ruling

Page 8: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

The Unfolding Story 1997-1999

Persistent back pain – GP Visits, X-Rays

Orthopaedic Surgeon – Bone Scan, Blood Tests

1997 1999

•Calcium 3.51 (2.05-2.75) 5.73 (6.1)

Described as ‘inconsistent with life’.

•Creatinine 141 (60-120) 214

•Urate 551 (120-480) 685

•Bilirubin Direct 9.9 (0-6)

•Alk Phosphate 489 (90-300)

Page 9: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

Peer Review

“The combination of bone pain, renal failure and hypercalcaemia in a young patient points either to a diagnosis of primary hyperparathroidism or metastatic malignancy and these ominious results should have been investigated as a matter of urgency”.

“All evidence indicates that the patient was suffering from a solitary parathyroid adenoma and removal would have been curative with a normal life expectancy”

“Kevin would have had surgery to remove the over-active parathyroid gland. He would have been cured and would still have been alive today.”

Research : 96% Success; 1% Complication

Page 10: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

The Post-It

Page 11: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

The Shortcomings

• Inability to recognise seriousness of Kevin’s condition• Appropriate interventions not taken• Selective and incomplete transmission of information.• Non receipting of vital information• Absence of integrated pathways• Link between behaviour and test results not made• Developing neurological problems ignored

ABSENCE OF DIRECT COMMUNICATION

WITH THE PATIENT

Page 12: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

Shortcomings Contd…

• Treatment at Registrar level

• The team dynamic

• The impact of a weekend admission

• Patient asked to accommodate system?

• System intended to accommodate patient?

• Expectations of a Tertiary Training Hospital

Page 13: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

Every Point of Contact

Failed Him…

Page 14: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

Official Data : An Example

Page 15: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

The Response of Doctors

• Defensive• ‘Loyalty to colleagues’• Muddying the waters – dissembling - e.g. Claims of inability to understand ‘layspeak’• Attempts to shift responsibility• Confidence in any hope of ascertaining truth shattered• Excuses offered were unsustainable to the point of being

offensive• Expectation of professional and honourable conduct

betrayed

Page 16: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

Legal Route to Finding Answers

• System favours defendants

• Disempowerment of plaintiff• Plaintiff takes huge personal risks• “David and Goliath” experience• Wearing-down process• Lack of compassion

Page 17: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

A Wish List : Do it Right!

• Observe existing guidelines, best practice and SOP’s. Be prepared to challenge each other in that regard

• Following adverse outcomes undertake “root cause analysis” "system failure analysis"/"critical incident investigation”.

• Communicate effectively within the medical community and with patients

• Keep impeccable records

• Listen to patients and families

• Respect patients and families

ACKNOWLEDGE ERROR

AND ALLOW LEARNING TO OCCUR

Page 18: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

A Wish List Continued

• Know your personal limitations

• Replicate what is good and be always vigilant for opportunities to improve.

• Learn and disseminate that learning

• Practice dialogue and collaboration – meaningful engagement with patients and families

• Create a coalition of healthcare professionals and patients

ACKNOWLEDGE ERROR

AND ALLOW LEARNING TO OCCUR

Page 19: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

Validating The Way Forward

• Acknowledging the reality as experienced by patients - real people.

• Patient-centred care is intended to be just that. Robust data collection needs to include for patient input.

• Patients as part of the process.

• Concretising the role of improved patient safety data systems in revealing root causes (the real issues that need to be addressed) and in driving quality assurance in relation to improved outcomes for patients.

• The absolute need for improved patient safety data systems to result in measurable improved outcomes for patients.

Page 20: Safety Data for Safer Care From the Patient Perspective Margaret Murphy Patient Advocate Member, Patient for Patient Safety Steering Group WHO World Alliance

THANK YOU

Margaret Murphy

June 2006

[email protected]


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