Learning From the Patient's Experience: Opportunities to Improve Patient Safety

1. AHRQ 2009 Annual ConferenceResearch to Reform: Achieving Health System ChangeBethesda, MD • September 14, 2009 Learning From the Patient's Experience: Opportunities to Improve Patient Safety International Initiatives on Patient & Public Reporting of Adverse Events Martin J. Hatlie, JD President, Partnership for Patient Safety Co-Founder, Consumers Advancing Patient Safety CEO, Coalition for Quality & Patient Safety of Chicagoland

2. Goal today is to share ideas about: • Better understanding of risks of injury in healthcare that consumers see but providers/policymakers/ public health officials may not know • How to encourage patient reporting • Better understanding about ways consumers contribute to error, prevention, rescue & mitigation • Advancing the transformation in attitude and culture toward systems-based safety/quality work

3. 25% of things that go wrong are easy to understand 75% are infrequent and difficult to measure Hence, reporting events and deconstructing what happened is essential to understanding risk International Classification for Patient Safety (ICPS)

4. Patient/Public Roles reBetter Understanding Risk Patients and their lay carers see things across the continuum of care. • Things caused by hospital care that do not manifest until later • Things that “fall between the cracks” across transitions in care • Things that multi-tasking healthcare workers just miss • Things that are risky, but have become normalized

5. Patient/Public Roles reBetter Understanding Risk Perhaps in contrast to providers, patients appear to be very willing to report: • Patients and families who have experienced medical error have a high desire to see remedial actions (Vincent, Gallagher, Hickson, many more) • Patients frequently report when given a pathway to do so (Agoritsas & Perneger, Wasson) • 94% of patients answered safety questions; 51% reported one or more undesirable events • 2009 focus groups done in UK and USA

6. Patient/Public Roles reBetter Understanding Risk Consumers (including patients and carers) have a unique expertise in relation to their own health and their perspective on how care is actually provided. Consumer complaints are therefore a unique source of information for health care services on how or why adverse events occur and how to prevent them. As well as reducing harm to patients, better management of complaints should restore trust and reduce risk of litigation, through open communication and a commitment to learn from the problem and prevent its recurrence. Better Practice Guidelines on Complaints Management for Health Care Services (2004) Australian Council on Safety & Quality of Health Care

7. Research/Experience re Impact of Patient Reporting Patient/Consumer reporting not well understood. • Most patient engagement activities are poorly tested, implemented & measured (Entwistle) • No human factors evidence to support patient action making things systemically safer (Lyons) • No highly successful patient reportingprograms in healthcare to date

8. Two Current Research Projects • National Patient Safety Agency (NPSA) • Evaluation of United Kingdom’s (UK) patient & public reporting component of the National Reporting and Learning System (NRLS) • Project recognizes that patients are not reporting frequently and are not aware of the UK’s reporting system • Seven focus groups, Seven stakeholder interviews • Will be completed in 2009 • Agency for Healthcare Research and Quality (AHRQ) • Project recognizes that consumers are an important source of information about health system safety • Will be completed in 2010

9. NPSA Patient & Public ReportingNotable Characteristics • Implemented in 2005 • Meant to be used by: • Patient • Relative, partner, friend or carer • Someone else • Never heavily promoted • Has lost its own name (= Patient & Public Reporting) • Distinguishes reports from complaints • No investigation of reports • Reports for learning purposes only • No fields for capturing the names of the reporter or the providers involved • Results of patient reports not integrated into quarterly NRLS reports • Rarely used

10. NPSA Patient & Public ReportingNotable Characteristics FAQ 2: Why can't the NPSA investigate my case? We don't have official powers to investigate individual cases or deal with complaints about the NHS organisation that provides your care. But there are other organisations that can help if you have a complaint or would like to request an investigation. See Q3 below. We don't keep information identifying individuals because we want to help the NHS learn from its mistakes by looking at why things have gone wrong, rather than trying to blame or punish individuals. We don't keep the names of either patients or healthcare staff. We hope this anonymity will encourage everyone to tell us when things go wrong.

11. NPSA Research Questions 1. Evaluate public perception, satisfaction, and level of awareness of NPSA’s patient and public reporting system to date. 2. Understand who reports patient safety incidents and how and why patients want to report their incidents. 3. Determine patient expectations and needs when reporting patient safety incidents. • Determine why the NPSA has received a lower than expected volume of patient safety incidents from the public and patients. Identify barriers to reporting. 5. Provide recommendations on what the NPSA should do to increase reporting, reduce barriers for patients and the public to report, and manage expectations of patients and the public.

12. 1. Evaluate public perception, satisfaction, and level of awareness • 90% of the participants not aware of patient and public reporting system. • One or two in each focus group panel were not aware that NPSA existed. • Among those that know of the NPSA, low satisfaction level with regards to NPSA being helpful to patients. • High perception that patient data is considered second rate by NPSA • Frequent comments reflecting deep distrust in government systems and fear that any entity dedicated to the patient will eventually “get done away with.” • Many knew or knew of Peter Mansell. Frequent perception that Mansell welcomed patients and listened to their stories, and that he is now gone.

13. 2. Understand who reports and how and why patients want to report • Potential reporters = patients, family, friends, solicitors, advocates, organization leaders, community leaders, and healthcare workers. • Unanimous desire to see reports used to avoid repeat error. • Significant confusion about where to report a patient safety event; current “maze” of reporting avenues = “chaos.” • Should be multimodal mechanisms for patient reporting – walk-ins, phone (most cited), email, website, letter. • Anonymous reporting should be optional only; patients want to use their name and want feedback and ongoing contact. • Assurance that reports are confidential should be an option. • There is strong opinion that patients should name the trust or consultant in their reports. If not, how can follow-up on patient reports happen, trends of unsafe care in trusts be identified, or change occur?

14. 3. Determine patient expectations and needs when reporting • Unanimous: Acknowledgement of receipt of report with some feedback indicating action on the report is essential. • Specific expectations included: • Explanation and recognition on behalf of trust (provider) of responsibility • Accountability • Evidence of action/change such as changes in policies or protocols • Use of reports in future planning • Apology • Reporting to/acknowledgment by a human being • Reporting system to provide or lead to access of a mechanism for investigation of incidents. • Some participants also expect publicity about reports.

15. 4. Determine why lower than expected volume of reports and identify barriers • 90% of the participants not aware. (Question 1) • Perception that information will go into a “black hole.” • Reporting system provides no feedback. • Web page hard to navigate and patient reporting info hard to find • Language not motivating: Says NPSA will listen, but not engage. • “Too much anonymity.” • e-form produces perception that NPSA is a data collection agency only interested in statistics. • e-form takes too long • e-form lacks questions about how event impacted patient’s life. • e-form does not include space to suggest solutions • Belief that the e-form could be improved with more patient input

16. 4. Determine why lower than expected volume of reports and identify barriers (cont.) • Fear that care will be compromised and that those who report will be “black listed” or branded a “trouble maker” • Three research participants used pseudonyms in the project • Belief that patients who report are not taken seriously. • Some did not perceive NPSA’s inability to investigate as a barrier, but would want NPSA to advise where to file complaint (which it does). • Some patients are too emotionally affected or too harmed by their experiences to go through process of reporting. • Dismay and cynicism about sustainability and the high rate of turnover of structures for patients to report/complain/call for investigation.

17. 5. Make recommendations on what the NPSA should do to increase reporting, lower barriers & manage expectations Recommendations will address: General issues Operations Outreach Publicity

18. ICPS framework will advance understanding of patient actions or omissions as: Contributing factors Mitigating factors Ameliorating actions ICPS Understanding Patient Roles in Contributing/Rescue/Mitigation

19. ICPS classification framework will advance patient outcomes research: Physical injuries Mental/behavioral outcomes Extent of disability ICPS Better Understanding Impact of Adverse Events on Patients/Families

20. Research about Patient Roles Consumer Reporting Research Questions: • Do patients who report contribute to changed practice standards or better outcomes? • What is impact of patient reporting on litigation frequency or amount of compensation? • Do consumers have different reporting needs? • Phone intake? Narrative format? • Do consumers need feedback to sustain participation in reporting?

21. Impact of Patient ReportingAttitude & Culture Change • Providers currently reluctant to discuss inherent, emergent risks of healthcare with patients • Patient reporting has potential to advance shared mental model about continuous challenges of managing complex risk • Maybe: Patient engagement as reporters of adverse events creates trust?

22. The Power of PartnershipA Lesson from Aviation “One reason that an incident reporting system worked in aviation...was that the entire aviation community -- essentially all of the stakeholders, including air passengers -- were involved in the process from the beginning and became advocates for the reporting system (as well as severe, but constructive, critics).” …Charles E. Billings, MD, Developer of the Aviation Safety Reporting System, Editorial Arch Pathol Lab Med 1998, 121:214-215

23. Patient Reporting of Adverse Events = an Issue at Every World Health Organization Patients for Patient Safety Workshop