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Milestones & Learning from Parent Support Groups Project


by Nancy Watson

​I enjoyed participating in the Peer Support Groups for Parents (aka Parent Support Circles) Roundtable on August 13, 2015. The purpose of the Roundtable meeting was to bring together the agencies and parents responsible for organizing and facilitating the parent support groups to share where the groups have been implemented, who the groups have served and what the agencies and parents have learned since the project began in FY

A story shared by a parent facilitator in the East San Gabriel area, demonstrated how the support groups have helped parents:

In one of my groups, a mother and father were required to participate by DCFS. At first the mom didn’t participate a lot, but as the group went along, she began to open up.
After the parents completed the group, the DCFS case was closed.

Funded by First 5 LA, the project goals are for parents to learn about their child’s development, increase social connectedness, and obtain available community resources. The
contractor Children’s Institute partners with five community-based organizations, to implement 100 support groups across the 2.5 year project which ends in June 2016. Since 2014, the project has implemented over 60 parent support groups communities across
LA County including Best Start Communities of Metro, Pacoima, Panorama City & Neighbors, and El Monte/South El Monte.

A quick snapshot of the support groups was provided by Evelyn Wang, a senior researcher at Children’s Institute:

A total of 414 parents participated from January-July 2015. The vast majority of participants were female, but 62 participants or about 14% were male.

The most frequent type of groups were Self Care and Special Needs followed by New Baby. A small number of groups also focused on Men and Teen and Foster Parents.

Parents were referred primarily from the five project’s community-based organizations and their partners, followed by hospitals/Welcome Baby, and Best Start Communities Partnerships.

Groups typically last 1 to 2 hours each, are held either weekly or bi-weekly, and are located at community-based organizations or other accessible locations such as community centers and public housing. Two parents facilitate each group. All facilitators receive an intensive 3-day training before they get started, and ongoing supervision from Children’s Institute and the CBO partners.

A total of 80 parents have been trained to facilitate the groups including several from Best Start Communities. The panel of 6 parent facilitators described how the groups operate
and work to support parents:

Parent participants play an essential role in what gets discussed by sharing their parenting experiences and resources with one another.

During the course of the group, parents establish strong connections, and some parents stay in contact between meetings or after the group has ended.

The parent facilitators also shared how they got involved with the project and what they’ve learned. All on the panel described feeling very rewarded in being able to help other
parents. For example:

Guie, a parent facilitator who works with Family Focus Family Resource Center and was recruited by the Child Care Resource Center, stated it’s important to bring together parents to establish social connections face-to face. She wishes these types of group had been available when her son was first diagnosed with autism as she felt “so alone” and lacked support from her family.

Jennifer, a mother of 3 children who was recruited at a Best Start Partnership meeting and has facilitated several groups, proudly described how she has improved her communication
skills and ability to relate to others.

The community-based organizations who have worked with the parent facilitators to implement the groups described ways the project has increased their support to families and has led to new partnerships including:

Providing support groups in the communities where families live instead of families having to travel long distances to their agency

Some agencies expanded services to more parents by offering groups to any parent with 0-5 child in need of support in addition to parents of children with special needs.

Two CBO’s started participating in their local Best Start Community Partnerships.

Finally, the CBO’s talked about sustainability of the Parent Support Circles. When the CBO’s first started outreaching to other organizations about being involved, they asked for a commitment to recruit parents to facilitate as well as to host a group(s) to ensure understanding of and build support for the parent support group model. Some of the CBO’s have already sustained some of the support groups with their own and/or their partners’ resources, and CBO’s are continuing to build upon current, and if needed establishing additional partnerships, to implement the final groups. Also, through the Train the Trainer process, CBO’s and their partners will learn how to train additional parents to facilitate the groups in order to sustain current groups and/or create new groups in the future.

Safety Across the Board,

Life has the capacity to end in so many different ways. But for those who have lost a love one to a medical error or experienced medical harm, there is a lasting sense of hurt that lingers long past the event. Any random act of violence, acute illness, disease or accident can result in the need for a hospital stay. To that same point every hospital stay incurred today has the ability to result in a number of preventable harms that might also cause death.

A major sense of urgency came upon me after losing my father to a preventable medical error. Although, trained in health care operations and having worked in the field professionally for many years before, it wasn’t until after his death that I embarrassingly learned of the vastly inconsistent ways in which health providers monitor and manage the risk of medical harm. It wasn’t until his death that I learned first-hand about the extreme lack of transparency, inadequate communications and forfeited learning moments that happen all too often when harm occurs. Through my reflection of this still indescribable tragedy my passion grew stronger for the needs of everyday consumers. Today, I find that while there has been some progress this issue still remains very political and insufficiently prioritized at the local level. Mobilizing Patient and Family Advisory Councils (PFACs) on the front lines in local hospitals is a key strategy for moving this agenda forward.

The most astonishing discovery was the lack of consistency in the design of patient safety programs and the lack of proactive surveillance systems used to identify, measure and monitor all forms of preventable harms. As I began to do my research, hospital by hospital, every system was different. And in most cases harms were indeed dealt with like projects; on a case-by-case basis. I became completely broken hearted. Not only for my own situation, but for the millions of lives lost from preventable harm.

Daddy died in 2009, but it wasn’t until 2013 I discovered a methodology that could be a major game changer in health care. As originally introduced through the work of the Partnership for Patients Hospital Engagement Networks, Safety Across the Board (SAB) embraces what patients see as important. Safety Across the Board activates a systematic approach toward eliminating harm. To embed the consumer focus, patient and family engagement and health equity are central parallels to the work of Safety Across the Board. Rather than a project-by-project approach, hospital leaders operationalizing Safety Across the Board are requiring that their safety programs focus on reducing all harms occurring in the hospital setting through the systematic development of composite scores and reporting systems. There are several foundational components to achieving Safety Across the Board:

• Adoption of a culture of safety; where safety is a strategic imperative and is interwoven into the fabric of all organizational priorities
• Composite scoring and reporting that includes all known forms of harm
• Inclusion of patient and family engagement throughout the health services continuum and of inclusion and diversity as core principles or Patient and Family Partnership Councils development
• Health equity as a performance strategy. Hospitals operationalize strategies that identify and eliminate disparities in safety outcomes

The mechanism of composite scoring adds transparency to the decreases and increases in all preventable harms. Instead of having a bunch of different reports that look at various harms, hospitals use an aggregated report (composite scoring) to show all presentable harms in one grid. This provides a way of tracking opportunities by making obvious the lives harmed as well as the areas of improvements by counting the lives saved and harms prevented. Composite scoring exposes harm in a logical way. It calculates lives lost and lives saved in a very practical way that even people with non-clinical backgrounds easily understand. Similar to the way the airline industry provides directions for landing in case of an emergency, simple is what safety should be. Easy to interpret and communicate, so that more lives are saved.

The Safety Across the Board model is an epic change in the patient safety movement that puts into action a full complement of stakeholders working together on multiple levels to eliminate all forms of avoidable harm. Through patient and family engagement as well as the way in which reporting is structured, SAB moves the safety discussion from percentages and figures to the sharing of faces and real people who have been impacted by preventable harms within hospitals and health systems. Safety Across the Board provides both patients and providers a roadmap to improving safety in a meaningful way.

I gasp when I think that few hospitals have yet to integrate their work in health disparities with their quality programs. I gasp when I think about the few facilities that are looking at all known forms of preventable harm and making that information transparent to consumers. I gasp when I think of the fact that while many would agree hospitals shouldn’t compete on the issue of safety, there still is a sense of entitlement in that field that separates the concerns of real people and medicine. I gasp when I go into rooms where patient voices are filtered by corporate perspectives and overshadowed by pre-planned agendas. Safety Across the Board provides a practical framework for creating more robust and patient-centric safety systems.

As a patient advocate, I simply want to know that my loved ones and I are being protected against every possible harm at all times by every health care provider we engage. It’s just that simple. I challenge all consumers to spread and share Safety Across the Board.

SAB Conceptual Model_v10_wLEAPT (2) (1)-page-0

by Knitasha Washington, DHA, FACHEDr Knitasha Washington (2)
After many of years of commitment to advocating for the elimination of health disparities, her perspective on the U.S. Health System changed dramatically after losing her father to a medical error in 2009. “What I found out first hand was the bias that is embedded in the fabric of our health systems”, shares Dr. Washington. Today, Knitasha serves in multiple roles driving change and innovation nationally. As an advisor to the National Partnership for Patients Campaign, Dr. Washington has been commended for her work to improve equality of health outcomes within the quality domain. Knitasha is credited for being the thought-leader that forged a pathway to consider health disparities among vulnerable populations a strategic imperative in the nations fight to achieve improvement in quality and patient safety.

What is the difference between Patient Experience and Patient Engagement?

What is the difference between Patient Experience and Patient Engagement?.

Basic Human Needs: Food, Water, Shelter and Safety

Safer Schools.  Safer Transportation.  Safer Food Supply.  Safer Communities.  Safer Internet.

 Safer Healthcare.  

Everywhere we go, we see projects and programs promoting safety.  Think about that for a moment, really think about the moments of your life when you felt safe, warm, cared for, comfortable.  Were you confident and empowered in that moment?  Now think about moments of your life when you felt unsafe, worried about imminent harm.  Were you confident and empowered in those moments?  Likely not, more likely you felt as i did this week sitting in an urban community hospital emergency waiting room with my child.  As we watched the waiting area unfold, our collective anxiety mounted.  The first hour, we reassured one another ‘it was just a busy night’.  During the second hour we grew increasingly nervous with the realization that two volunteers and a 20 something security guard were triaging patients as they came in.  What happened in the 3rd hour was too horrifying to mention.  So we sat for the 4th hour trying to decide if we could possibly get safe care in this setting.  Near the 5th hour we decided we were not safe in this environment and we left without being seen.

We are more fortunate then most.  Because we have had experience with healthcare, we knew we had options.  As we got to the car, the relief washed over us as we once again felt the comfort of safety.  A sense of safety is an essential human need.  People often asked me how I got through our boys’ multiple health crisis, surgeries and hospitalizations and my answer was always the same, as long as they felt safe, we could do anything we needed to do.  But if they were afraid, that was the hardest time for me.  So my efforts were always focused on creating a safe environment within the hospitalized or healthcare setting.  At first, that entailed singing softly in their ear at induction so they wouldn’t be afraid, later it meant checking meds before administration, using hand sanitizer and insisting everyone else did too.  And now I collaborate with large systems to bring safety to healthcare environment.  But i wanted to step back for a moment and ground myself in urgency needed to establish Safety Across the Board in healthcare.  Safety must be priority for everyone in healthcare.  Every single person.  Every one of us has the capacity today, right now to ensure a patient’s safety.  I’m sure that volunteer knew she was in over her head, but rather then call for professional help, something in that system made her try to manage the situation alone.  If you are working in environments that do not promote a sense of safety for you and your patients, speak up now.  Please.  Let’s look at safety in care as a basic human need and in doing so focus on doing everything within our individual power and our collective strength to ensure safety to all who encounter the healthcare system.

Setting the Table for Collaboration Across Community Settings

As the proud mom of an adult son with schizophrenia and an addiction history, who has received fragmented services in the Contra Costa Public Health System for 14 years, I have dreamed of a health system that will provide continuous, compassionate, integrated medical and recovery care for my son. Because of my son’s co-occurring illnesses he is at risk of dying 25 years younger than the healthy population. A whole health system is what he needs to save his life.

My dream is to help build our public system into a seamless continuum of health services that will improve the health and care experience for my son, my family and my community. I have found that to be a common dream shared by many who live and work in Contra Costa. However, I have often found that adversarial stances and territorialism interfere with improvement opportunities.

Though intentions are honorable, personal agendas and system-focused agendas prevent authentic dialogue about what it is like to experience care and provide care in a very broken system. The fear of retaliation is real for patients, families and providers of health services. Thus, we don’t often hear the negative experiences expressed in meetings. Fear and anger creates distrust. All of these tensions have been present in stakeholder meetings in Contra Costa County. They have often locked us in competitive battles that stop us from realizing our vision and mission.

In the summer of 2012 I joined a small group of consumers, family members and providers who were determined to create a process that would allow for diverse perspectives to be heard in a safe, protected environment where we could discuss system gaps and barriers with the intent to create action plans for change. A Community Planning Partnership was created with a goal for driving change from the front line perspective of receiving and providing care.

The hypothesis of the Living Room Conversation Project of Contra Costa County is that we can change from a fear and anger based relationship to an empowered, respectful dialogue as partners in community health if we provide an opportunity for safe and respectful, learning about the patient and family experience. The intent was to outreach across the system from the hospital to the health centers to the community. We included psychiatric, mental health, homeless, Alcohol and Other Drugs, several community based organizations and consumer and family members with lived experience.
The planning partners used the Living Room Conversations model, adapting the structure to better fit the needs of this community. We called it a Community Living Room Conversation. (Living Room Conversations are an open source project that welcome this kind of use. )
Recognizing that the access and care experiences will vary based on racial, ethnic, language and socio economic disparities, our planning team felt that it was critical to go into each unique region of our county ‘s culture to engage in a community, human, gut level sharing.

The first conversation occurred in March of 2013 in the central part of our county at Mental Health Consumer Concerns. On October 17th we held the second test of the Community Living Room Conversation pilot project in Richmond, California at Rubicon, a long time community provider. This second conversation included the leaders of our CCC Health system, Dr. William Walker, Health Services Director, Anna Roth, CEO of Contra Costa Regional Medical Center, Health Centers and Detention Health and Cynthia Belon, Director Behavioral Health.

These health leaders were asked to just introduce themselves as Bill, Anna and Cynthia. They joined the circles but just to listen. Their experiences were communicated to the group during the partnership building after session. They described the profound privilege to “listen and learn” and the difference in “listening and hearing.” It was discussed how hearing is a physical sensation but listening touches the heart.

The community partners will review the evaluations from these first two Community Living Room Conversation tests and continue to make improvements to the model. We plan to host a third Community Living Room Conversation in East Contra Costa County in early 2014. We are also adapting the tools to Spanish and will consider adding law enforcement partners to our team.

The Community Living Room Conversation model allows for deep hearing of the human experience. It strips away titles and allows for a level community playing field to serve as an innovative lab for system improvements. These conversations are an opportunity to get real, build trust and bust silos. If we want to transform healthcare in America we have to get comfortable with being uncomfortable and learn from other perspectives. We are doing that in Contra Costa.

“For those who have no home or living room, we will create a Community Living Room to welcome all to share and learn. For those who have no family or a mom who still dreams of recovery, we will create a Community Living Room to build community dreams, hope and health.” Teresa Pasquini, mom


Anna Quindlen Q…

Anna Quindlen Quote “We understand that you’re busy. But it only takes a moment to look, really look, into a person’s eyes, to pass back and forth the spark of humanity we share,”

.Anna Quindlen, in her speech Health Care in an Information Age: How Doctors, Nurses, and Consumers Can Make One Another Better presented at Humanism in Medicine lecture at the Association of American Medical Colleges (AAMC) 2013 Annual Meeting.  

Patients & Families Need Knowledge to Engage

A decade of caring for a critically ill child and another 13 years of patient safety and advocacy efforts have convinced me that access to even a small amount of information at the right time can completely transform a health care experience.

Why am I so sure?

 Because even as an educated health care provider, I struggled at the bedside to keep my child safe from harm. I understood most of the terminology that the doctors were using, I had knowledge of the disease process surrounding infection, and I considered myself to be an experienced advocate for my daughter. What I was lacking was a foundation of basic information. I didn’t understand the hospital hierarchy and who to ask for the answers and the help that we needed. I struggled to communicate effectively with my daughter’s providers and to function as a true member of her health care team. I remain convinced to this day that what I didn’t know at the time allowed additional, and preventable, harm to reach my daughter.  

 My work at The Empowered Patient Coalition helps ensure that patients and their loved ones feel informed and empowered when interacting with the health care system. I know from first-hand experience that a small amount of preparation goes a long way in supporting safe and successful health care outcomes. My husband and I struggled to find our own solutions during a life-threatening health crisis. We want others to learn from our experiences and avoid “on the job” training – because being prepared in advance can mean the difference between life and death.

 We have many resources for patients and families in a variety of formats. Our newest project is the free Empowered Patient app for both iphone and Android.  Our organization realizes that a significant number of people turn to their phones for health information- especially in a crisis or during an emergency. The Pew Research Center’s Internet & American Life Project recently released data showing that 56 percent of adults in the U.S. are smart phone owners. And it isn’t only young people who are choosing smartphones – people 65 and older are increasingly utilizing this technology. According to the Pew project, 18 percent of people ages 65 and older own a smartphone. Pew also reports that 72 percent of adults have looked up health information online in the past year. There is no doubt that the future of patient education and engagement is intertwined with phone technology and that it is vital to develop apps specifically designed for patients and caregivers.

The Empowered Patient app is simply the starting point for feeling informed and engaged that I wish I had had all those years ago. It’s time to stop expecting patients and caregivers to feel confident or empowered without first providing a foundation of basic information. We have to do the hard work of putting useful, appropriate information in the hands of patients and their advocates and then support them as they develop the skills and the confidence they need to move forward in partnership with their health care providers. It simply won’t work any other way. Our information provides a foundation or a blueprint for interacting with providers, making decisions, asking appropriate questions, and avoiding many of the inherent risks associated with health care interactions, such as infections, common medical errors, and miscommunication.

An unplanned admission often means that people need information quickly as they struggle to deal with the sudden, overwhelming complexities of inpatient hospital care. Many hospitals have Internet access, which allows people to do research without leaving the patient’s side. Information that is literally right at a person’s fingertips is both reassuring and empowering. And as challenging as hospitalization and surgery can be, routine office visits also present formidable challenges to patients. The Empowered Patient app addresses both inpatient and outpatient issues – from diagnosis to discharge and beyond. Our app gives patients, families, and caregivers resources, strategies, and the authority they need to step up to the plate and become empowered quality and safety partners.



“Patient Family…

“Patient Family Advisor Skills Exchange is like menthol up your nose. It opens you up and gives you energy for the work”
– Alice Gunderson, St. Francis Medical Center, PFAC Co Chair


To improve effectiveness and impact, Patient Family Advisors need preparation to develop core competencies.

Patient Family Advisors who develop these core competencies will have greater impact,  more quickly.

Core Competencies for Patient Family Advisors

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