1. Engaging Patients, Providers & the Community for Safer, Better Care
Certified Medical Board Executive Institute
October 26, 2016
Marie Dotseth, MHA Executive Director
Minnesota Alliance for Patient Safety

2. Overview What/Who is MAPS? Why focus on patient & family engagement?
MAPS current work to engage patients
How can we support culture change?

3. The Minnesota Alliance for Patient Safety
Originally formed in 2000
All volunteer, in-kind support
Incorporated as a 501c3 in 2012
First staff hired
VISION: SAFE CARE EVERYWHERE
Over 100 member organizations
Across the continuum of care, across the state, public & private
Board of Directors
5 Founding partners: MHA, MMA, MMIC, MDH, Stratis
6 Strategic Partners: Mayo, MNA, DHS, CareProviders, Leading Age, M Health
1 patient

4. MAPS Early Work
Provided expertise and advocacy to pave the way for the groundbreaking and “first of its kind” Minnesota Adverse Health Care Event Reporting Act.
Transformed the Informed Consent Form to be more consumer-friendly.
Led the way to develop the framework for a safe, accountable and Just Culture. Received the John M. Eisenberg Patient Safety and Quality Award (2006) for Innovation recognizing its work in creating a Culture of Safety.

5. Engagement is Safety
MAPS Strategic Priority: Engaging patients, providers and the community for better, safer health care across the continuum 
Evidence is clear – Engaged patients get safer care & have better outcomes
Safety is a necessary condition for patient engagement
Lack of safety erodes trust
Without trust, meaningful engagement is nearly impossible

6. NPSF Report, Safety is Personal
“Engaging Patients and families in improving health care safety means creating effective partnerships between those who provide care and those who receive it – at every level...”
Why Engage Patients for safety?
Extra set of eyes,
Know their symptoms
Highly invested
Always “present”
Provide insights about care and care processes
Patient resilience inspires caregivers

7. Safety is Personal
“This should not be seen simply as a new initiative or program; it is rather an effort to inspire strategic alignment across the communities of health care consumers and advocates, policy makers, researchers, and health care leaders and clinicians to commit to increasing patient engagement in order to reduce harm.”

8. Patient Safety Developments
Gordon & Betty Moore Foundation
Almost half of U.S. patients report that their physicians do not always tell them about their treatment options or involve them ... And, 26 percent of hospitalized patients report that clinicians fail to explain medication use... Not only does this lack of engagement lead to clinical harm, but it also results in a loss of respect and dignity
Consumer Reports
Those who said they rarely received respect from the medical staff were two and a half times as likely to experience a medical error as those who thought they were usually treated well.

10. Start at the End – Call to Action
“The panel feels strongly that we have failed to make substantial, measureable, system-wide strides in improving patient safety. Other priorities have overshadowed the agenda of keeping patients safe from harm related to care. Insufficient collaboration and perhaps lack of will have stalled progress...”
Preventable harm remains unacceptably frequent—in all settings of care and among all patient populations.

11. Free From Harm Report
…a fundamental finding from the past 15 years is that patient safety initiatives can advance only by making teamwork, culture, and patient engagement a key focus…
Meaningful advancement in patient safety can occur only when a total systems approach underpins improvement initiatives.

12. NPSF Recommendations
“At its core, patient engagement is about the free flow of information to and from the patient”

13. IOM Report on Diagnostic Error
Estimated that 5 percent of U.S. adults who seek outpatient care each year experience a diagnostic error.
Postmortem examination research… has shown that diagnostic errors contribute to approximately 10 percent of patient deaths, and
Medical record reviews suggest that they account for 6 to 17 percent of adverse events in hospitals.
Recommendations
Health care professionals and organizations should partner with patients and their families as diagnostic team members …To accomplish this, they should…
Ensure patient access to electronic health records (EHRs), including clinical notes and diagnostic testing results, to facilitate patient engagement in the diagnostic process and patient review of health records for accuracy

14. MAPS Grant funded Project
Engaging Patients to Improve Safety at Transitions: Lessons from Consumer Research and Pilot Testing

15. Transitions, the Problem
Confusion – lack of follow through, over, under and misuse, inconsistent monitoring
Cost – failures of care coordination, overtreatment, poor quality care cost $Billions annually
Harm – medication errors, missed lab test results, misdiagnoses
Prevalent – communication between providers/settings routinely not completed

16. MAPS Approach
MAPS decided to focus on the patient side of the equation
Can the transitions process be simplified, made actionable for patients and consistent for any transition of care?
Average hospital discharge instructions = 70 pages1
We can provide consumers actionable tools to better engage and stay safe
1. Hanson, Candy RN, Julie Jacobs MS, RN. StratisHealth HIT PAC (Health Information Technology – Post Acute Care) Environmental Scan. January 2013

17. Safe Transitions of Care – Best Practices
Successful safety improvement at transitions centers on a plan that routinely includes the following elements:  
Medication reconciliation,
Communicating test results,
Understanding the warning signs that a medical condition is worsening, and
Completing next steps or follow-up appointments.

18. Consumer Research - Findings
Conducted Online Digital Bulletin Boards (ODBBs) with 100 Minnesotans
Allowed us to recruit participants statewide
Allowed us to capture reactions to communication themes on an individual basis prior to group discussion
Took place over 5 days  5 hours of input x ~100 respondents
Discussion guide could evolve as we learned
Separating boards by gender  similarities and differences between women and men could be observed

19. Word clouds of respondents’ descriptions of their health conditions’ effects on their lives also revealed differences between genders
Men tended to accentuate the positive and focus on their determination to continue life as usual
Women were more likely to express regret, loneliness, and concern about how others viewed them
I feel as though things are happening to me and I have no control over them and what they are doing to my life.
My daily thoughts always focus on the future and if I am strong, I will be able to be here to enjoy those days.
I pretend that I'm feeling well when really I'm not, so I feel like I have to put a different "face" on

20. Tested a “To do” List & Graphics
“To Do” List was derived from evidence-based best practices

21. Patient Feedback Number of items on “To Do” list about right
VERY few wanted MORE items on the list
Most likely to say they would act on next steps & watch for warning signs
Least likely to bring lists and results
Polarized feedback on medication lists
Many expect the “system” to keep track of medicines and test results
It's too much work to bring with to your Dr appt no matter what your ailment is…It's not gonna get done.

22. Patient’s Accepted Responsibility Scale
My responsibility only
Mostly my responsibility, but also someone else's
Split Responsibility; half mine half someone else's
Mostly someone else’s responsibility, but also mine
Someone else’s responsibility only

23. Patients’ Accepted Responsibilities – Rank Order
Immediately reporting to my doctor when something happens that is associated with warnings signs
Filling and re-filling prescriptions for all recommended medications
Keeping a list of all major warning signs associated with all of my conditions
Asking for written copies of major medical tests

24. Patients’ Accepted Responsibilities – Rank Order (cont’d)
Making appointments for all examinations, consultations, tests recommended
Keeping a complete list of all follow-up steps recommended (examinations, medications, tests)
Keeping an up-to-date list of medications
Bringing written copies of all major medical tests to all medical appointments

25. The Solution; Campaign Materials
Patients under-engaged
Assume “the system” has everything covered
Rarely told they matter in the caregiving process
So, care providers end up under-informed
Misdiagnoses, mistreatments, delayed treatments, medicine interactions

26. MAPS

27. MAPS action to advance patient engagement across all care settings
Primary Care Pediatrics/Parents Long-term Care Families/Mental
Health System

28. MAPS Patient Engagement work and objectives
Purpose: to provide both patients and healthcare professionals with a valuable, interactive resource for patient and family engagement best practices, guidelines, resources, and contacts.
How can we efficiently spread effective patient engagement practices, across all settings of care in Minnesota, for purpose of improving safety and quality?
Start with definitions
Numerous definitions, appears to be evolving over time
A handful are widely accepted
“Patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system—direct care, organizational design and governance, and policy making—to improve health and health care.”
K. Carman et al, Patient and family engagement: A framework for understanding the elements and developing interventions and policies. Health Affairs 32, No. 2(2013): Definition of patient and family engagement.
Contention point: patient engagement vs. patient experience vs. service excellence vs. patient-and-family centered care

29. MAPS Patient Engagement work and objectives
Built Virtual Community
Dynamic, real-time, “living/breathing” tool vs. a publication that could become dated soon after printing
Where best practices, challenges, and ideas are shared and spread
Heart of a virtual community to be an “open source guidebook”
“open source gives everyone access to the blueprint, then access to universal redistribution of that design or blueprint, including subsequent improvements to it by anyone”
Utilizing and Building Upon “Include Always”

30. Include Always Mission
Include Always. That’s what we aim to do.
Include patients and families at every level throughout the health care system. Through conversations, sharing ideas, and inviting the patient in, the outcome will be better health care for everyone. We’re not launching a campaign that begins and ends. Together, we’re creating a cultural shift, a unified mindset where the patient is truly one of us. It’s a whole new health care approach. It takes a whole lot of change. It takes courage. It takes all of us working together to make our system the best it can be.
We will listen more, engage often, and Include Always.

32. How can we support Culture Change?
The problem, oversimplified
How to shift
Physicians from problem detectives…
Patients from passive recipients of care…
…To co-creators of health
Patient has health problem they can’t solve
Physician determines problem
Physician prescribes treatment
Patient acts to follow up
Patient achieves “health”