Mary Minniti's Site

The Journey Continues- Building on Community Assets

I have been a delinquent weblog writer. And tonight I would like to catch you up. Since my last entry in October, I have turned 50 year old; hosted the IHI Technical Assistance Site Visit Team of Maureen Bisgnano, Jim Reinersten and Andrea Kabcnell. They brought along Alan Goldstein, a Group Health Cooperative cardiologist as well. We have applied for a grant through Connecting Communities: an E-Health Initiative, and we are in the process of speaking with patients who receive the services of a Clinical Care Specialist about ways they think we can sustain and spread the services without additional positions/funding.

Additionally we have talked with patients/community members about what patient-centered care is and how they yearn to be a full partner in their care and what aspects of connection with their doctors and clinic staff invite them into the process. As a result of their feedback, we are improving the patient centered care experience survey for the clinics. This includes feedback from the clinics, too...so that the information is meaningful and they can take action to improve it.

Data to prove our work has value and is making a difference is not easily available as we have such disconnected data systems across the community...however, we have identified the % of patients receiving the services of a clinical care specialist that prevented hospitalizations, an office visit, ER visit and found and corrected medication errors. We used conservative estimates of these cost avoidance efforts and estimate we have possibly saved $368,215. And that was for 69 patients only.

We are being asked by community members when they can have a shared care plan...we are connecting with the Volunteer Resources in the community who are interested in providing people to help support others in starting their own shared care plan. We have connected with community assets such as the Technical College to begin dialogue about including training for nursing staff on the patient-centered model and use of the shared care plan as well as conversations with the University Wellness Program. The City of Bellingham and Ferndale School District is interested in spreading the use of the shared care plan to employees and students. A small trial is underway.

At times progress seems slow..there is no big bang in transformation, subtle shifts occur that are the result of conversations occuring on the local, regional and national levels. There is a yearning for a new way and an impatience and despair with the old. Change is sought and resisted in the same moment within the same individual...much as a person with a chronic condition bargains and denies there is a need to change, yet knows change must come to move toward a healthier outcome. Others read about what we do, call for information and amid the many questions- I hear an unspoken question...does it work...will it make a difference....what proof do we have this is the "right" way.

I wonder did the pioneers, pilgrams, native americans moving to new lands or embracing new ways to respond to changes in the environment want to see proof before moving toward a desired state or destination...did they wait for all the maps to have specific roads drawn, miles calculated, gas stations/way stations identified before they began the journey? I think not, I think they had a vision, they created teams/partnerships that worked and were forgiving and forged ahead. Sometimes supplies ran low...both in terms of resources and resilience....yet they moved on...adjusted their course with new information and insights...sometimes they had to partner with others different from themselves to move to a new understanding.

The other thing they did is look around at those on the journey, and stop to be grateful for how far they had come and to celebrate those who came along. I had the opportunity to celebrate with patients who have come along with us by listening to their stories. I heard through their own experiences how they were enriched by the experience, more self-confident and willing to pitch in and assist not only in their own health but to connect with others. The community assets are people: they have many titles, they come from many walks of life...but they are resourceful, dedicated, connected and caring. Together within a community, the change will occur...outside of the clinics, hospitals and inside.the walls of institutions- everywhere..we must notice the value and riches that are right here and cultivate the will to continue learning and exploring the roles and contributions each one of us will make to build a new way of providing and being in service to each other.

I am grateful to have the opportunity to participate in this journey.

Sustainability- In the Midst of Transformational Change

Today, we spent some time with the Boston University Evaluators hired by Robert Wood Johnson Foundation. Their job is to evaluate and learn from our transformational experience in Pursuing Perfection. They asked us: How will we sustain the effort beyond the initial funding...in light of the expectation that RWJF will reduce support signficantly in Phase 3. Our answer was we weren't sure...the path was not clear before us. No payers were coming to the table, offerring money and resources for a newly designed set of services aimed at preventing complications and the high costs of complications. I wonder if it was difficult to people to get on the ships to sail to the New World? How many had to be asked before a few signed on....

And I thought not just about financial sustainability but also what we would do to sustain the spirit and heart of what we are doing. That truly is the challenge. If we cannot capture the hearts and minds of a community, how will we maintain the intent/vision of a perfect healthcare system? If we rely only on healthcare professionals in isolation from the larger community...we will not transform the system. We need a space where everyone contributes to the whole and understands their role in promoting health and managing the challenges of chronic illness. Patients and family members need to be invited and welcomed in to the help create those solutions. We live in a community and we need the community to be partners who can lead the way. When we have engaged others outside healthcare, I have been amazed at their resourceful, creative ideas and very mindful of the costs. They want to be part of the solution.

As we talk about sustainability, we need to consider both...it will take both heart and money to truly transform a system. As a community we have so much to gain...

Transformation- A Journey Toward Excellence

It is now September 2003, and we have been on the journey of transformation for 15 months as part of the Pursuing Perfection Initiative. [2 years if we count the planning and collaboration that occurred with patients, healthcare professionals, and support members such as education, information technology and quality improvement staff]. We have met many milestones and created infrastructures that support change. Clinical outcomes have been improved for some diabetes and heart failure patients. Methods of communicating between and among healthcare team members have been established. We are not "there" yet....if there is a destination....and for some who want concrete signs of change, it can be discouraging.

The healthcare system continues to be overburdened, with staff/doctors working frantically to keep up with the pace of change and expectations. And those stories of the burden continue to be shared. Sometimes, that venting can cloud our ability to notice that there has been change and that things are different....

However, it was undeniable that positive change had occurred, when Representative Rick Larson and Mary Conway, from Senator Patty Murray's office came to visit on August 25, 2003. They spent time with patients/family members whose experience of healthcare was positive and engaged them in partnership with healthcare professionals at their clinics or in relationship with a Clinical Care Specialist. Stories of their growing awareness that they [ patients/family members] played a part in the solution for healthcare transformation, the clear role that new ways of getting support through group visits expanded their skills and connections to move toward improved health outcomes. Rick and Mary also made visits to Center for Senior Health and SeaMar Community Health Center to see first hand how technology was shown as a useful tool to assist in the flow of information to better care for patients.

It is important to have those opportunities to step back from the focused and fast-paced work to notice the changes and to know each change has made a positive difference. It helps us renew our energy to continue to work ahead. However, it is important to remember we are not on this journey alone and that patient/family members can help us see the way ahead, if we ask for help, engage their creative minds and the resources/strengths they have to contribute to this transformation.

So, if you as a healthcare professional begin to lose focus and lament, "I can't do this [change, transformation] "...know that is only true if you believe you must do "this" alone. You are not alone....as I looked around the faces at the 1st International Family-Centered Care conference, it was clear those in healthcare are not alone...we have team members ready, willing and able to bring their gifts, talents and skills to bear on making a positive difference in their own health outcomes...we have to believe this is a team endeavor and not an individual event....and share the burden and possibilities of a future with those most invested in a positive healthcare outcome.

1st International Family-Centered Care Conference- Some thoughts

Just returning from the 1st International Family-Centered Care Conference sponsored by the The Institute for Family-Centered Care www.familycenteredcare.org. I was accompanied by Hal Petersen, a patient representative to the P2 project in Whatcom County. There were many diverse groups represented who are working on integrating patient, family-centered care in the fabric of what is delivered in a variety of arenas. The number of stories told by patients, parent of chronically ill children and others who partner with healthcare professionals was powerful...In a room of 700 people, almost 20% of the attendees were those individuals. Sorrel King opened in the first plenary, sharing her story of medical errors that killed her 18 month old daughter at John Hopkins and the efforts being made to improve the system. More information is available at www.josieking.org. Clearly much more can be done to integrate patients, family members into the fabric of what we are doing in Whatcom County. Creating patient/family advisory councils and hiring paid patient/family coordinator reporting to top leadership at some organizations showed a level of commitment beyond lipservice. Ideas, energy and commitment were in evidence at the core of the center. Creative and innovative ways using videos, dialogue and role-playing with healthcare professionals to heighten awareness and build skills at true partnership were highlighted as interventions that changes culture and behavior. I noticed that on a topical basis over 80% of the examples of patient/family-centered care was in pediatric and maternal/child services and much fewer with adult populations. It renewed my commitment with the ever increasing number of people with chronic illness that expansion to working with patients as partners and members of the care team is even more important. I heard many examples of the burden being lifted from healthcare professionals when they joined with patients in partnership...how they continue to take their responsibilities for excellence seriously...but how they didn't have to make all the decisions, know all the answers and that patient/family members could provide resources to reduce the burden on the healthcare professional and resulted in a better clinical, functional and satisfaction outcome.

Boston: A Milestone Meeting April 28-29, 2003

It has been 10 months since we began transforming healthcare in Whatcom County with patients on the design teams, new roles on the virtual care team [ie.Clinical Care Specialists] and a "tool for self-management" called the Shared Care Plan developed within the context of PatientPowered.org website. It was a dream of community health through transformation begun in earnest in June 2002. Today we sat together with healthcare innovators from 4 countries - Sweden, Denmark, England and the United States to review what we've learned, what great ideas and best results we have experienced and of course, the sharing of "one thing we would never do again!". It was an amazing experience to celebrate the work countless people in 13 communities are doing. And to be reminded by Don Berwick that our opportunity to model a new and better way of providing healthcare...a way that will reduce mortality, embrace the use of scientific evidence, provide relief from pain, reduce waste and reduce needless helplessness for patients must produce results. And through this demonstration of results, we can create the experience and hopefulness we all want for our patients, our loved ones and ourselves from the healthcare system.

We focused on three arenas of challenge; True Patient Partnership, Execution of Large Scale Projects, and Working across Organizational Boundaries. In small groups, we shared innovative ideas...ones that are anxiety-provoking and will result in infrastructure change. And we committed to small tests of change next week on BIG IDEAS...so Whatcom County...the bar, it's moving toward perfection and we will be pursuing it...next week, and the next...and we will get results....our patients and WE expect no less. I have confidence that if we do more of what we have learned in 10 short months...and mobilize the assets our community ...the possibilities are bright for our community and for all. See you soon in Whatcom!

Lessons from the Edge- in Eugene, Oregon

There is a saying, "My Brain is too full." I think Gary Larson even has a cartoon with that theme. These days both my brain and calendar are too full. After 8 months implementing Pursuing Perfection- The Reality, I have had many learning moments. Capturing them on paper often requires some reflective quiet time- something in short supply. However, I will jot down a few soundbites for now...each one worthy of its own weblog...but those musings will be for another time....

Living in another community [at least on the weekends], helps me detach from the decisions made in Bellingham. I can be objective in discussions about the pro/cons. I respect that each organization has to live with the decisions made. I am better able to keep the patient perspective in mind and bring it to bear during discussions.
Five weeks away from home is too long for me...I notice I become more intense [hard to believe] and the edge confuses/muddies communication - raising questions about intent...Creating a balance between home and work is important to the project as well as for me personally.
Managing staff and managing this project are two distinct jobs and I am doing both. It has challenged me in many positive ways. Unfortunately, juggling both has caused a few balls to drop...I believe the P2 staff have shown an immense amount of patience and perserverance with me during this learning. I hope I have shown them the same level of regard and graciousness. They are juggling the pressure of the world and the pilot sites...supporting them through immense changes....As individuals they are resourceful, empathetic and creative...behind the scenesdoing what is a somewhat thankless series of tasks......ask them what it really takes...they know the ups and downs of the creative process...unsung heroes yet not forgotten...this project and its accomplishments would not be possible without them
Despite the positive acclaim we are receiving outside the community for our patient-centered approach, we fall short of what is needed to sustain a patient-centered system. No one organization has embedded the infrastructure to build it into the fabric of all they do...many are experiencing the value and an increased awareness of its importance. As a result, the staff of P2 are spending effort to continually create these opportunties to link patients/organizations. It is critical work, yet something we underestimated in our planning. It is not getting the attention it deserves...and we are aware of the gap...and living between perfection and reality is difficult at times.
Our website: www.patientpowered.org with its education and resource information and leading to the secured portal which holds the secured web-based electronic shared care plan is a beauty to behold. It has been birthed by the dedicated efforts of patients, P2 staff and others. So we have built it...will they come? If the they is patients...resoundingly YES..they will come and help us make it even better through their feedback, involvement and insight. If the they is busy healthcare professionals...doctors, staff etc...in the short term they will struggle...because the way the work is currently organized make this tool "more work in the short term". In the long-term, YES they will come and find it immensely valuable...it is just there is a chasm between now and FUTURE. Fortunately, we have 20 healthcare support staff in training at the community college who have volunteered to help create a bridge between now and future...a resource to help us in the transition...because they care...
Patient outcomes...are they improved? 8 months later...we have more on registries but outcomes look about the same...why? Why is because we are not doing two projects....we are changing healthcare through transformation and piloting all the changes with two patient populations....that is much harder to do...its building a foundation...not pretty but solid so that as we build the new system...it has something strong to build upon....antedoctal stories and patient experiences say we are on the right track...the charts going to IHI just don't show it yet....

Reflections of Site Visit by IHI on November 13, 2002

Ringing in the New Year happens best when we reflect on the year gone by- here is an excerpt of my comments to Whatcom County P2 participants following a RWJF Technical site visit.

The site visit team consisted of: Polly Arango, National Advisory Committee member [who was at the last site visit 2/5/02 and advocated for our community to be funded], Maureen Bisogano, VP at IHI, and Connie Davis, GHC Chronic Illness Care Collaborative and IHI faculty The day was structured to provide brief time for our technical resource team to have a brief overview of work done since June 2002 and then to spend the rest of the day dialoguing with patients, P2 staff, pilot site guidance team members, and PPLB members. The discussions were transparent...we shared the truth, stories of amazing change/success, teamwork, patients and healthcare staff experiencing a positive difference, dedication and passion as well as the bumps, and dilemmas we've encountered along the way. It was a celebration of how far we've come..... and a recommitment to the vision and re-energizing ourselves for the joyful work ahead.

We will be receiving a summary of what they shared informally at the wrap-up at day's end....but why wait...Let me share for you a few of their general themes.

Maureen: Our vision is a decade ahead of others she's seen in the U.S. Perhaps the world. Our commitment to patient-centered and the efforts to integrate patient voices into the ongoing design of the system is much farther ahead of anything she's seen. Our IT infrastructure is amazing. Our communication methods outstanding. She challenged us to keep a strong connection to clinical outcomes. Are you, are patients healthier as a result of the change? Run more cycles of change in small ways to move quickly. Link the finance depts. into the work we are doing to ensure we are lowering costs.
Connie: Whatcom County is amazing, has a reputation in many areas as being a leader in this area...We are to be commended for taking on the difficult challenge of behavior change on three incredible levels: patient, staff and system. Remember the diffusion theory and start with people who are ready. Renew energy to continue through the stories of patients whose lives are better because of changes made.
Polly: Coming here is invigorating...the information and strategies we have in place gave her ideas for her own community and others she encounters. The shared care plan may be the symbol of what this is really about and the best method for proving it. Our vision-effort is broad in its enormity/complexity...and challenging to keep one's arms around. Our greatest success 10 years from now will because word-of-mouth in the community will create the spread. Stories need formalizing....in the patients she met today...there are stories to share....powerful and compelling. She encouraged us to celebrate the little successes...look for them everyday. She reminded us that problems teach us and that the learning can be profound as we solve them.

I am thinking of you who have been involved in Whatcom County over the years building a foundation and to those of you in other PeaceHealth regions whose experiences we have integrated into the fabric of our vision and strategy for transformation of healthcare....it's all being brought together in this "learning lab in Whatcom County " that RWJF calls Pursuing Perfection. Thank you for the problems you've already solved and those we didn't quite solve- both experiences have created learning. Thank you for the passion you've already expressed through your caring for patients and each other. Thank you for your commitment to continuously improve the experience of patients/families. It's the focus that comes from a willingness to look every day for ways to keep the patient in the center and build a system to support their improved health. We are making a positive difference and I am proud to be associated with you in this journey.

Innovation, Ideas and Influence

Today, I had the privledge of sitting with the Pursuing Perfection Project staff in Whatcom County and hearing their thoughts, dreams and frustrations - the human experience of being in the inside of innovation. I heard many messages:

a desire to innovate, push themselves and the project outside the boundaries of what the community had agreed to do because of their passion for patients, and people trapped in a system that doesn't work anymore and creates distress among the healthcare workforce.
I also heard a desire to share as a team some of the ideas that have risen to the surface as we explore what we might do- the possibilities if we chose to focus our collective energy, resources toward new ideas that enlarge and move toward the vision of patient-centered care.
And then there was a questioning and yearning for influence- having immediate influence that moves those sites who struggle with the gap between vision and what might be and today- and what they have capacity to add to their already busy day....
and then the desire to have influence for patients by creating tools that make a difference from their perspective....

It seemed clear that there also was an interest in influence beyond one's individual role and the deliverables of a grant. We are individuals who come together for a common purpose; we do not necessarily play with innovation, ideas and influence with the same perceptions and experience.

So what is the right balance between innovation, ideas and influence within the context of what we agreed to deliver...and how do we as a team and individuals maintain a balance that nutures the project and the people? I'm not sure there are easy answers...but I have some ideas.....

Look for ways to make a difference today and in the moment by doing what you can within the context of your role. Assume permission to innovate, engage patient, team members to create the best that resources and time will allow.
Share your ideas about the future state and ways to get there freely and write them down so others can see them and think about ways some kernal of the idea can be integrated as opportunities may present themselves.
Understand that control over others or the direction- something as big as tranformation in healthcare - cannot be controlled by one idea or one individual. Influence through interaction and sharing ideas is the best to influence in this complex adaptive system.

I wonder what other ideas to create positive influence others may have as we continue the journey of change?