PCN Strategic Leadership Forum

September 8-9, 2017 www.healtharrows.ca

@healtharrows

https://www.facebook.com/HealthArrows.ca

Presenter Disclosure

• Presenter: David Price

• Relationships that may introduce potential bias and/or conflict of interest:

– No relationships to declare.

• Thank you for the opportunity to speak with you this morning.

• Really is a pleasure to be here with leaders in improvement

• Family introduction

Outline • First about Greg

• His Journey • Health Quality Council of Alberta reports

• Our • Experiences in the “system” • Perspective • Beliefs

• Opportunities and needs

• Our priorities

• Our latest project

• Questions and discussion

Greg Price

• Born in Calgary April 5, 1981

• Greg collapsed and died in our home May 19, 2012

• Initial shock, what happened?

• Lots of questions. No straight answers

• We were being “handled”

• Soon we began to realize Greg was not taken in and “cared for” but instead, simply processed and treated by a big impersonal system that is also leaving many others at risk

• Greg was selfless, respectful, with high pain tolerance

• He was intelligent, a good listener and good communicator

• These attributes made him vulnerable to the disjointed, big “system” that he/we put his/our trust in. It cost him his life.

• So many places in his journey the outcome could have been changed but wasn’t

• The system didn’t kill him but it didn’t save him when it could have and should have

• After his death, we found what he referred to as his “book of everything”

Greg’s quotes “The men who try to do something and fail are infinitely better than those who try to do nothing and succeed.”

“A century from now it will not matter what kind of car I drive, what kind of house I lived in or how much money I had in the bank… but one hundred years from now the world may be a better place because I was important in the life of a child.”

“My best friend is the one that brings the best out in me.”

• Greg also believed, as his grandfather used to say “you have two choices; you can be part of the solution, or part of the problem.”

• We want honour Greg (and do as we know he would be doing) by trying to be part of a solution, reducing or eliminating the chances of this happening to other individuals and families.

• We also knew very early on, that we needed credibility beyond being just a grieving family. We were getting no answers and not being “listened” to by big system people.

• Our first effort was to create HealthArrows.ca, a resource for individuals and families to learn from Greg’s journey and from our experiences

• We also hoped that it could be used for education and training, to put “care” back in the system, for new entrants.

• We described our view of what the big system should provide:

Safe, continuous, collaborative, patient partnered, team-based care.

• Our biggest opportunity, work with the Health Quality Council of Alberta (HQCA), who asked if they could investigate what led up to Greg’s death. Alberta Health Services (AHS), at that point, also indicated they would contribute to a joint public report.

• We understood the goals were the same as ours. We were not looking to find and expose individuals

• We hoped everyone would learn from what happened and recommend how to improve things for the future.

• Over the next number of months, working with the HQCA we listened and learned from each other. We pushed each other beyond our comfort zones.

• Very important to us to be part of the process and to learn and contribute the best we could.

• December 2013 the HQCA, with our presence and support, released the Continuity of Patient Care Study

(http://hqca.ca/studies-and-reviews/continuity-of-patient-care-study/)

19

• HQCA Board

• HQCA CEOs / Exec Director • HQCA Review Team

–Ward Flemons –Donna MacFarlane –Carmella Steinke –Margot Harvie

• HQCA Communications –Lisa Brake

HQCA Recommendations

13 Recommendations with 4 sub recommendations

Broad Themes:

• Electronic medical recording, and communication among Patient, Primary Care, and Specialists

• Teamwork and improved processes between all providers and Big System Players

• Clarify responsibilities and expectations of physicians on their own, and as part of larger provider groups and overseers

• Our family is forever grateful for the courage and effort of the team and the leadership of the HQCA in doing this report

• They worked with us often also swimming upstream in the “Big System” and provincial politics

• The report created an important foundation on which people talk with credibility about needed improvements

• The “we” family grew, as many different people and organizations began to use Greg’s Journey and the Continuity of Patient Care report to educate and advocate for improvements

Family Experience Teri, Greg’s younger sister

• 1 month after losing Greg, Teri was experiencing abdominal pain and went to family doctor.

• 2 possible diagnosis, needed more tests but family doc can’t expedite

• Go to urgent care centre and line up

• Labs closed

• Emergency again

• Conflicting advice

• “If you don’t like our decisions, we will simply prescribe medication and send you home”.

• Appendectomy, perforated appendix.

• Told about a mass in her bladder as she was being rolled into surgery.

• Matt, Greg’s older brother

• Very sore ear

• 2 wrong diagnoses, and treatment regimes.

• 3rd “Shingles”, treatment

• Double vision, severe pain, vertigo

• Referred to Emergency, careful evaluation and consultation. Shingles with complications

• Referred to specialist

• The same specialist that had been consulted by Emergency doctor

• 0:1:37 (he was late and I timed it) tirade belittling diagnosis (Matt not in enough pain for shingles!)

• Also told to get used to the situation. Don’t expect improvement. Have to live with the conditions

• Help from friend to get referral, more tests in hospital, confirmation and treatment

• Mostly recovered now (2 years later)

• Chad, Greg’s youngest brother

• Health concerns

• Quick referral to specialist

• Prompt thorough evaluation and full discussion

• False alarm and doing well

• Patient and family perspective when health challenged

• Think about the “river of life”

• You now know that Greg was abandoned or dropped into that cold water a number of times.

• He was strong to start with, and he fought hard and listened the best he could to what should be coming next, but too often those things didn’t happen.

• Some workers on islands didn’t need or want more patients. Their fax machines sat unanswered apparently without anyone else knowing it or concerned, except ultimately Greg himself.

• By the time that he found an island that he could pull himself up on, he was weakening quickly. The mass inside was choking off his blood supply.

• There he was quickly processed and dropped back in the water.

• With some help from his family, he made it back to one more island. There he was told that all was as expected. His/our fears were unjustified and he was put back in the water…

• And we lost him

• Greg’s experiences are not unique

• Teri, Matthew and Chad are doing fine, but 3 of 4 experiences not as they should or could have been

• We have people who write to Health Arrows, and tell us about their very sad, and preventable experiences with the system

• Real people with real experiences in a badly disjointed and expensive system

• System culture is transaction based and managed by “command and control”, fostered and reinforced by ultimate oversight by politicians

• Tactics include “delay, defer, deny and if necessary intimidate.

• Politicians by nature are risk adverse; Innovation and Change are risky

• As Primary Care Doctors, you know this and have to deal with it along with your patients

• What do you think a common factor is in the tough stories we have experienced and are told about by patients and families versus other better ones?

The best results have a fully engaged doctor as a full partner with the patient, insuring continuous care on their journey.

• Without someone insuring continuity and finding the bridges, patients are left floundering looking for an island that can help

• Often patients and families are left wondering “who’s in charge?”

• Health Care is only possible through Team effort.

• The work you are doing to improve clarity and strengthen the linkages between each patient’s primary care doctor is critical

• The Patient Medical Home (answers Who’s in Charge)

• Care Plans (informs Team and exposes unengaged)

• Improvement Facilitation (Teamwork and successes)

• Panel (efficiency, knowledge)

• EMR Optimization (consider non-system sourced innovation)

• Community of Practices

• Alberta Screening and Prevention (impressive growth)

• Greg worked hard to make things better for family, for his friends and to do his part for society

• He was a great supporter of others and a strong team player, helping everyone to be the best they could be

• Our family now firmly believes that regardless of all the brave efforts of fine people the system will not change from the inside without the support of the public.

• For example, the HQCA April 29th follow up report Improving Continuity of Care: Key Opportunities and a Status Report on the Recommendations from the 2013 Continuity of Patient Care Study, was not able to be released until July 2016.

• After more than 2 years, 3 of 17 recommendations completed (4,5a,8) the rest are at “moderate risk” (6), or “high risk”(5) of not being completed, or not worked on at all (3)

• We also believe it shouldn't done only from the outside. (The uninformed healthy taxpaying public)

• We all must find ways to work together to make things better.

• Too much suffering

• Too many deaths

• Too much time has passed without meaningful genuine system improvement

• I would like you to think about a different team member to join in the pursuit of improved health care

• It is the healthy public

• First they need to understand the real situation and not assume, as Greg and we did, that while it is not perfect, the system would not let us down.

• They also need to know about your efforts and the great things that you are doing, to make improvements as the Primary Care Doctors who are closest to them in the time of need

• Each of us need to have conversations with those we are comfortable talking to (family, friends) and have them learn and understand the need for change.

• Associations or organized groups also have the opportunity to provide information to the public as well.

• You are in a powerful position to really drive improvement in the roles of coordinator and facilitator of patient partnered care.

• And you can talk to some of the healthy public from direct experience about the need for improvement.

The healthy, and tax paying, public needs to understand how to make it a more efficient caring system. Otherwise, the government will cut resources resulting in more turf competition, fewer bridges

The informed public can help support your good work in the face of politically driven cuts

Our priorities

1. All our patient information must be in our hands • Share with those we trust, communicating and closing

gaps. 2. Everyone must learn from mistakes and near misses

• Powerful body (HQCA +++)fully funded and obligated to investigate, report to patients and families, all care providers, and insure timely improvement occurs

3. Teamwork culture fully developed, away from top down command and control. • Care is a team effort, partnered at all levels, with the

patient and family.

Our Latest Project Falling Though the Cracks: Greg’s Story

• A short film about Greg’s journey through the health system.

• www.gregswings.ca/fttc-gregsstory

• The film was written by Andrew Wreggitt, Dean Bennett Directed, Nick Thomas was our Director of Photography and Kevin McGarry was cast as Greg.

• Please remember Greg and use the information on HealthArrows.ca - especially Greg’s Journey to help make things better.

• Thank you again for the opportunity to speak with you.

• It is a pleasure to be here in this room with strong positive leadership.

• It gives our family energy and hope for the future.

• I look forward to your questions and the opportunity to hear and learn more as the Forum progresses.