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Tuesday, October 18, 2005 |
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My "Idea Summary" for remarks and discussion at the California HealthCare Foundation's Chronic Disease Care Conference.
Our future will be determined by how our communities manage chronic medical conditions.
Systems supporting chronic care ideally will work throughout a community.
This is the scale at which patients experience care through multiple resources, multiple organizations, multiple providers, friends and family.
Patients are valuable co-designers of health systems and processes.
We include patients on all design teams.
The team knows who to invite, just encourage them.
Avoid advocates. Include active, experienced patients. They have compassion for us.
Care managers, of a special kind, are essential.
They are the often missing link (continuous relationship for complex patients).
o Lifeguard (immediate action to save life and costs)
o Navigator (negotiate access, remove delays)
o Coach (increase patient activation and self management, support behavior change)
o Translator (help physicians, patients, and families understand each other)
There is a large opportunity when we can connect paid care managers with volunteer community resources in support of a much larger group of patients.
Personal Health Records are an essential technology, but not as many organizations are thinking of them.
They support alliances and knowledge sharing for behavior change.
The best one's will be designed by patients and for patients with chronic conditions.
See www.sharedcareplan.org and http://www.wwpp.org/users/0000002/
Supports involvement of each person's virtual care team--the patient invites and controls access.
The PRINTED version, the artifact, stimulates the missing conversations. People talk about it. More productive conversations now occur--
Between providers and patient
Between patient and family
Between relatives at risk for similar conditions
They must be patient "owned" and patient controlled if they are to result in behavior change.
For maximum benefit and adoption it must not be limited or controlled by a part of the fractured health care "system". It must remain functional--
No matter who your doctors are,
No matter whether your doctors choose to use it on-line or not.
No matter which hospital you use.
No matter which health plan you use.
In other words it needs to be a "community" supported tool for communication and for the involvement of patients and anyone that helps them with their chronic conditions.
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Patient Involvement on Teams: Learning from a Community Collaboration in Whatcom County
Considerations:
Some healthcare professionals have been tentative or fearful about patient involvement on their teams. They are concerned that patients will be critical of healthcare providers, and expose the soft underbelly of our tenuous healthcare system.
But patients are true stakeholders and have proven to be great partnerships in care design and delivery. They have a vested interest to ensure that communication is clear, possibilities and risks are explained, and access to information is timely and geared to what patients and family members need. Their input is most often practical, innovative, fresh, and simpler than what we ‘professionals’ envision. And they can do one important thing we cannot do ourselves. They can and do forgive the individuals—they recognize that the flaws are in the system.
“Patients” are people first, with life experience, preferences, resources and resource limitations, and direct experience with what we’ve determined they need from ‘the healthcare system’. Although each of us may be patients or family caregivers at points in our life, and feel more vulnerable in those times, we have access to colleagues and have knowledge of the workings of the ‘system’ to have a different experience.
We owe it to our patients, ourselves, and healthcare professionals everywhere to include our key “customers” as we strive to improve healthcare to become more safe and satisfactory for healthcare providers and recipients alike.
A Simple Rule:
The simple rule is to have the folk who are going to form a team invite patients whom they know and whom they believe would be interested in the work to be done. It almost always works.
The more compulsive approach follows. Our bias is toward simplicity.
Steps for Patient Involvement on Teams:
- Define Purpose of the team:
- What the team is concerned about.
- What the membership of the team will be.
- Duration of the team, frequency and timing of meetings.
- Expected outcomes--impact of the work.
- Define Purpose of patient participation on this team:
- Ask yourself, how will the outcomes differ with patient participation?
- How will the patient experience the team?
- How will the non patient team members experience change with a patient participating:
- Do you need more than one patient?
- Do you need perfect attendance? Can the patient select an alternate when they are unable to attend? Invite more than one patient so that participation limitations due to exacerbations in illness, or travel don’t leave you without patient representation.
- Team leaders or members nominate non-healthcare professionals, non-healthcare employees, for invitation onto team. (You can ask other managers who understand the work of this team to nominate patients for invitation.):
- Think about whether you want someone with experience as a patient, family member or both…
- Determine how to accommodate different levels of patient’s ability and interest in participation. Some will want to take active role, some may prefer advisory role. Physical functioning may limit active role for those with much to contribute, the richest, most articulate participants.
- Interview (see interview template) and vet the patient. If possible have another patient who has successfully participated on a team participate.
- Orient the patient.
- Confidentiality
- Mission, values, transformational aims
- Show videos that are appropriate for orientation.
- Team charter
- Roles of other team members
- Photos of team members with brief bios
- Contact person and contact information for the patient
- E-mail and document management
- Acronym list and other background documents
- Recognition
- Personal
- Public
- Your program patient materials
- Orientation packet
- Orientation meeting format
- Interview form
- Meeting agendas, minutes
Interview Template
a. Introductions
b. Acknowledge how you came to invite them. Who nominated them?
c. Explain the purpose of the team.
d. Ask about their experience as a patient and discuss with them how their experience seems relevant to the team's work.
e. Tell them something about the other members of the team, their team mates.
f. Ask about their interest in this kind of volunteer work.
g. Discuss logistics of meetings and communications.
h. Ask about internet and e-mail access.
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Wednesday, October 12, 2005 |
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Bill Mahoney and I gave linked presentations at the Collaborative Family Healthcare Association's Seventh Annual Conference (http://www.cfha.net/) on October 9th as the closing plenary speakers. Our presentations can be found by clicking on the following links.
Bill is a PhD Sociologist who has been working within PeaceHealth for about seven years and he is focused on how people can dramatically increase their capacity for working collaboratively together.
Marc Pierson's presentation. (it takes a minute to download due to four photos in the presentation, sorry about that)
Bill Mahoney's presentation.
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Mary Johnson, a librarian in Eugene, OR, speaks about her experience with The Shared Care Plan, a personal health record.
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Please take a look.
CLICK HERE
You may be pleasantly surprised what happens when patients get their own medical record that they can use and share as needed.
The work to create the Shared Care Plan originated from a Robert Wood Johnson Foundation Grant--Pursuing Perfection and was then supplemented by an AHRQ Safety Implementation Grant aimed at creating a single accurate medication list within a community and learning how to implement such a list. The patients in Whatcom County, WA, Eugene, OR, and Florence, OR, have all played an invaluable role in defining what they need and how to spread it. The patients have been and continue to be the designers. Now they are teaching us how to spread it to others.
2:10:35 PM
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Friday, February 04, 2005 |
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Friday, November 26, 2004 |
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Visualizing complex systems is difficult. Trying to navigate without a map is also a perilous undertakinng. Two years ago we created a mathematical model of the system which made the potential winners and losers clear. We have not made as much progress toward our promises and goals as we would like--we have had a plan but not a map.
I have been talking about Jonkoping County, Sweden for more than a year. They have mapped their health care system in one county and begun the process of whole system improvement--a cross multiple organizations. Here is a presentation that I put together after the first trip to Jonkoping.
Finding ways for lots of folks to focus on improving a system is a challenge. API and the County Council of Jonkoping, Sweden have done that.
We have built upon the work done in Sweden. It is interesting that the API (Associates in Process Improvement) methodology called Quality as a Business Strategy (QBS) translates well to the national Baldrige Award quality framework. Here is a first pass at matching their approach with Baldrige. If you want to see our high level map in three parts here they are: Healthcare Processes, Support Processes, and Driver Processes. One can even map the Chronic Care/Planned Care model onto this high level framework. On can also view the "mainstay" or key processes as a Clinical Microsystem as developed at Dartmouth. The trick will then be to locate the processes in the system, link them and then improve them.
Whatcom County created a map of it's healthcare system last May. We are beginning to move this work forward in various ways that I will report on in this web log as we make progress. The most exciting part is creating the map of patient processes as the "mainstay" of their own clinical microsystem (their homes and support networks) with the rest of us in support roles. That may be a major part of the future system of chronic care. Stay tuned.
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Wednesday, November 24, 2004 |
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In the local paper: See bullet # 6.
Of course Pursuing Perfection in Whatcom County is a collaborative effort of several organizations in addition to the hospital--in fact that is what makes it a unique and powerful agent of change. See these two links: one page summary and detailed overview.
Funding bill has millions for county
APPROPRIATIONS: Transportation projects are big-ticket items in federal bill.
Aubrey Cohen, The Bellingham Herald
A massive new federal spending bill includes $1 million to help prosecute cases stemming from the Canadian border in Washington, and millions more for Whatcom County.
The $388 billion appropriations bill, approved over the weekend, covers most domestic programs for the budget year that began Oct. 1. The measure is one of the leanest in years and includes a nearly 1 percent across-the-board cut in most line items.
Mike Spahn, spokesman for U.S. Sen. Patty Murray, D-Wash., said Murray sought the border prosecution money in light of lobbying by Whatcom County prosecutors and police, who have said costs to jail, prosecute and defend suspects arrested at the border have increased dramatically since Sept. 11, 2001.
Murray is a member of the Senate Appropriations Committee and the highest-ranking Democrat on the Transportation Appropriations Subcommittee. She announced millions in transportation funding, including:
• $1 million to build San Juan Boulevard between Yew Street and Samish Way.
• $1 million to help establish a border policy research institute at Western Washington University for the study of transportation, mobility and border security.
• $3.314 million for improvements to Interstate 5 south of the border in Blaine and to rebuild the Peace Portal Drive exit, which will be displaced by expansion of the border crossing.
• $1 million for improvements to Western Washington University's Lincoln Creek Transportation Center.
U.S. Rep. Rick Larsen, D-Lake Stevens, also announced funding for several projects, including:
• $121,250 to enhance Mount Baker Theatre's sound system as improvements are made to the building.
• $500,000 to continue and expand St. Joseph Hospital's Pursuing Perfection Program, which is working to implement a nationally recognized chronic care model by coordinating efforts and resources across the county.
• $634,000 to help ease congestion at the Blaine truck crossing.
Reach Aubrey Cohen at aubrey.cohen@bellinghamherald.com or 715-2289. The Associated Press contributed to this story. 
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Well I have been silent for quite a long time.
I have been trying to find my way forward for months.
The groups working on Pursuing Perfection in Whatcom County have accomplished much: Direct involvement of patients in the design of chronic care system and processes, Shared Care Plan, Clinical Care Specialist role, Groups Visits, Shared Governance, Teamwork and process improvement expertise, interaction and learning from some systems with some of the best practices in the country and in Europe. The patients who have experienced benefits of this effort are appreciative.
In order that we continue to improve our system of care (see by line above) we need to see it, literally have a map of Whatcom County as a health care system. And when we can see it, we must have some idea of what to do from there. We are lost without a shared map. A map of the system (parts and interactions between those parts) alone does not develop the territory of the map--the system which produces or limits the health of people in Whatcom County. We then must learn what ideas (theories) work and which do not work. We must use the theories and the associated tools to improve the system (a system which is currently invisible among the parts).
One year ago we learned that Jonkoping County Council, Sweden has taken a systems view, developed a map of the health care system, and made dramatic improvements in the experiences and health of their inhabitants--within the same budget. Well that is Sweden. They are slightly more disposed toward working together, cooperating, than the average American community, where the prevailing theory is that competition at most levels is the way forward. Win-Loose.
This week I have had the privilege of spending four days with a group of the gentlemen who worked with doctor W. Edward Deming for the last 10 or more years of his life. I have since reread "The New Economics, for Industry, Government, Education" Second Edition, by W. Edward Deming.
With the knowledge in that book, with help from those who have gone ahead, with maps of the system of healthcare in Whatcom County in hand, it is clear that we have the compelling reason to be hopeful, to be bold, to improve the system (interactions) that produce the quality of healthcare in this county. I would suggest the same is possible for each community where you can begin to mix theories of systems (cooperation, win-win) with our prevailing common sense that competition (isolation, win-lose, zero-sum games) are the route to improved value and happiness.
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Shared Care Plan. This is a very exciting program. Shared Care Plan is clearly a major step forward in improving the communication between... [:: Chemo Chronicles '04 ::]
Craig Miles writes, "As a cancer patient, I deal with my cancer as a chronic illness and I found this document to be better than anything I had for keeping informed and for sharing with caregivers. I plan to share this with my healthcare team at Kaiser."
"Too often, we think empowerment is patient-oriented, I think this misses the point. The entire healthcare team needs to be empowered."
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A few days ago a group of patients and their families talked to Ed Wagner about their experiences in Pursuing Perfection in Whatcom county. Each of these patients had a clinical care specialists and a shared care plan. What I heard changed my thinking.
They described the role of the shared care plan differently than I had expected. As I listened I came to see that for them it was a cultural artifact, an object around which improved conversations can occur. In the doctor's office, a paper copy is used to help the physician or nurse understand where the patient is in their goals and understanding. Likewise this piece of paper helps the patient learn from physician or nurse. They can write down and discuss medical concepts, diagnoses, medications, goals and plans. I heard that without this piece of paper the 15 minutes of an office visit is often confusing and less valuable. I heard over and over that this piece of paper help create a relationship between the doctor and patient that is more like a partnership than a trip to the principles office. One patient's daughter made the cute comment, "Dad is getting kind of uppity. He uses big medical words now." The point I took away is that now he understands the meaning of important medical concepts and that he, with his family and care team, can do a better job of managing his situation with diabetes.
Even more surprising was the story of a family. Before the shared care plan, "Dad, did not want to bother us with his diabetes." Little communication about his needs for special diet, exercise, and medications occurred, due to his desire not to be a burden. Since the daughters and wife have access to his shared care plan, they now print it out and talk together about what they can do to help. They have all changed their diets as they learned to change the cooking for their father. They understand more about what they can do to reduce the chances that they and their children will develop type II diabetes. This simple piece of paper has become the focus of new family conversations that help everyone. It has obviously added meaningfully to the lives of this family.
Something important is happening here. We are discovering with patients how to move beyond business medical records (which help physicians and nurses get the information they need and help insure that they get paid for what they did) toward a shared document about which learning and planning for improved self-care and partnerships can develop.
You can download a Microsoft Word version of the Shared Care Plan from https://www.patientpowered.org/PatientSite/Login.asp and you can look at the on-line electronic version which prints out for those who have assess to it. In Whatcom county, Washington, we are opening up use of the electronic version to patients and their families and caregivers.
For those of you who what to know more about the best thinking for how communities can support their citizens with chronic medical conditions, I recommend the Improving Chronic Illness Care site http://www.improvingchroniccare.org/index.html
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Sunday, February 29, 2004 |
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There is a really interesting book by Robert E. Quinn, Deep Change. Figure 14.1 on page 123 is very interesting. Read the book to see Quinn's insights on these three paradigms. It sure puts a lot of things into understandable context. The bold highlights are mine.
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Individual Contributor: |
Manager: |
Leader: |
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| Three Paradigms of Organizational Life: |
Technical paradigm |
Transactional paradigm |
Transformational paradigm |
| First objective |
Personal survival |
Personal survival |
Vision realization |
| Nature of organization |
Technical system |
Political system |
Moral system |
| Source of power |
Technical competence |
Effective transactions |
Core values |
| Source of credibility |
Technical standards |
Organizational position |
Behavioral integrity |
| Orientation to authority |
Cynical |
Responsive |
Self-authorizing |
| Orientation to elite |
Rational confrontation |
Compromise |
Complex confrontation |
| Orientation to planning |
Rational-tactical |
Rational-strategic |
Action learning |
| Communication patterens |
Factual |
Conceptual |
Symbolic |
| Strategic complexity |
Simple |
Complex |
Highly complex |
| Behavior patterns |
Conventional |
Conventional |
Unconventional |
| Ease of understanding |
Comprehensible |
Comprehensible |
Nearly incomprehensible |
| Source of paradigm |
Professional training |
Administrative socialization |
Personal rebirth |
Please understand that transactional paradigm includes the technical paradigm and that the transformational paradigm includes both the technical and transactional. Developmentally the technical paradigm comes first and is not necessarily accompanied by the transactional or transformational wisdoms.
If deep or transformational change requires commitment to realizing a vision (that does not exist in reality yet), if it requires "action learning" (something poorly understood generally), if it requires highly complex strategy (when highly simplistic strategy is the best one commonly sees), and if it requires "personal rebirth" something usually left to religious and spiritual realms... well there is work to do.
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Thursday, January 01, 2004 |
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Building Trust, by Flores and Solomon is a really good book. I rank it with The Wisdom of Insecurity, by Alan Watts as two of the most mind altering books I have read. Watts turned the conventional wisdom of insecurity on it's head, essentially showing that security or fixedness is closer to death and that insecurity or uncertainty is closer to life. When his wisdom sinks in, one comes to appreciate insecurity for what it is--the experience life-giving growth. On can then quit amplifying a certain amount of natural stress, by dropping the judgment that insecurity is bad.
Flores and Solomon turn broken trust and betrayal on their heads, as Watts did with insecurity. They allow one to see that trust and betrayal are sides of the same coin (one meaningless without the possibility of the other) and they also allow one to see that creating and rebuilding trust is the key act in creating a better and shared future. Without such acts of trusting and rebuilding of trust from moments of betrayal, no better future is possible. Trust is not a thing to be shattered. Trusting is a competency for all forward looking people to practice and learn--a verb, not a noun.
Below is a kind of relationship diagram that captures some of the ideas that filled my head as I read the book.
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A friend of mine, Gervase Bushe, wrote a very useful book: Clear Leadership. The insights and framework are based upon his career as a professor and business consultant
Clear Leadership is full of practical and immediately useful mental models and advice. Organizations are beginning to use it as a framework for leadership training at all levels.
After reading this book, I created a mnemonic and a drawing that help me keep a few of the book's key points in mind and handy for my use. I give them to you with Gervase's permission.
SOFTeNeD stories and maps.
Sensing--what is my body telling me? Am I poised for a fight, to flee, to hear, to learn, to have fun, etc.
Observing--what would others agree happened, what was objective, what data can we agree upon and share?
Feeling--awareness of feelings is very useful early on, as feeling color everything else.
experience, each person has a different one
Need (want)--what do I want to happen, what do I want in the way of agreements.
experience, our stories come from our experience, we can share these and ask others to share their's. Experience is subjective and has numerous aspects (SOFTND)
Do--what will I do and what will I agree to do?
This little graphic represents for me Gervase's four profound senses of self and matching sets of skills:
Appreciative self--the halos, understand what you and the other have done that you would like to see more of. It is a kind of "assets based" approach or "appreciative" approach and comes form the appreciative inquiry framework.
Aware self--the recursive loop, suggests that we spend time first going over the SOFTeNeD algorithm personally, before trying to tell others or ask others.
Descriptive self--the arrow from my mouth to the other's ear, suggests that I must describe my SOFTeNeD stories and maps to the other in an appreciative frame and expressing understanding that it is only my experience, not all facts.
Curious self--the arrow from the other's mouth to my ear, suggests that I must have skill in asking and hearing about their experiences and if possible their SOFTeNeD stories and maps. I try to hear in an appreciative frame.
It has been about a year since I read this book and I have not reviewed it for this post. I hope you will pick the book up and work with the concepts in it. We can all do our parts to reduce the "interpersonal mush" in our organizations and communities as well as at home.
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I have gradually come to realize that I unconsciously make a binary choice each time I think or act. I get out of my bed either on the defensive side or the learning side.
I either start my day holding on to... you name it. Or, I start my day open, willing and interested in learning, being vulnerable, wrong, embarrassed, over worked, surprised, delighted...open to a different future than I had yesterday. I think that it is this almost unconscious step that determines what is possible and what happens.
This is a short and somewhat personal post. I doubt that it requires more explaination.
I am just trying to be more aware of that first step each morning and each moment.
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A friend sent me a link to this poem. I pass it on to you. It is good and it rings true. It is by a doctor and more or less for doctors. But all may appreciate the sentiments.
A few lines:
"For the head will explain
but the final common pathway is the heart
whatever kingdom may come
For what matters finally is how the human spirit is spent"
Click here.
Healthcare is science, reason and caring. May none be missing.
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Thursday, November 20, 2003 |
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PatientPowered.org was recently recognized by receiving a silver eHealthcare Leadership Award in the category "Best Care/Disease Management Site". This award was presented by eHealthcare Strategy and Trends at their annual "Leveraging Technology and the Internet" conference ... (click here to read) |
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