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."

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.

PatientPowered.org wins award!

My invaluable assistant, Jill Hickok, told me about an NPR presentation on the use of story telling in medicine. We are trying to do something similar in Whatcom County to heighten the awareness and understanding of the relational aspects of medicine, especially chronic conditions.

We are coming to believe that among all the change and stresses of medicine the experience is loosing it's meaning for some providers and patients. Focusing on people and their stories is one way to combat the cynicism fostered by a broken or non-existent system of care. Most of us came into the profession because of a love people and a deep interest in people and their stories.

Here is a link to the NPR piece: http://www.npr.org/features/feature.php?wfId=1480863   (I hope their RealPlayer download works better for you than it did for me. May be a firewall issue. I will try it at home tonight.)

Here is a link to a piece on the physician that is spearheading the effort, Rita Charon, M.D., Ph.D.

http://litsite.alaska.edu/uaa/healing/medicine.html

Here is a link to a biosketch on Dr. Charon. http://www.medinfo.ufl.edu/other/histmed/charon.html

I hope to learn more about this approach.

 

I have heard Dr. Rachel Remen talk about the power of story telling.  I find stories more transformative than powerpoint and analytical data. Perhaps it is because they contain what we find most interesting and important--other people.

Here are links to her work: http://www.rachelremen.com/; http://www.meaninginmedicine.org/about_fmm.html; http://www.almanacnews.com/morgue/2000/2000_04_12.hfa.html.

Yesterday I had the privilege of talking about our Pursuing Perfection initiative with the house of delegates for the Washington State Medical Society. Below I have included to content of my 11 slides and my notes.

PURSUING PERFECTION in Whatcom County, WA

SLIDE 1, TITLE SLIDE:

PURSUING PERFECTION

WHAT'S IN A NAME?

Perfection? ...when things seem pretty bleak. When the pace and complexity of practicing medicine is at this highest yet. When frustration or even cynicism seems ready to overwhelm many. But in a culture that takes the charge "first do no harm" seriously. A culture where each of us carries the desire and burden for faultless care with us each working moment. I suggest that  by admitting to ourselves and to the public that we are all in the pursuit of perfect care may allow each of us to get some help. As the Chasm Report points out, the problem is with the system. The system that should help us do the right thing. The problem is not with the effort of doctors and nurses nor with a lack of desire or to do the right thing. The pursuit of perfect care leads directly into systems thinking.

SLIDE 2, OUR JOURNEY

• 1990 vision
• Persistence
• Access for uninsured, level 2 trauma system, seamless care?, Whatcom Integrated Delivery System, Community Health Record, Whatcom Health Information Network, Whatcom Community Health Improvement Consortium, diabetes collaborative, registry system
• IOM: To Err is Human & Quality Chasm
• Pursuing Perfection, Robert Wood Johnson Foundation & Institute for Healthcare Improvement, +16 others

Like many of your communities, cooperation has a long history in the community. Community wide efforts developed access for under-insured OB patients and others including dental patients. The community developed a common sense, yet bold vision to have seamless care and the best outcomes in the state within 10 years (It will happen but it will take 20 years. Who knew?) A series of large-scale initiatives have occurred in Whatcom County. The most audacious effort may be the current P2 initiative to transform healthcare in our community and in the nation.

SLIDE 3, PARTNERS & FRIENDS LOCAL AND REGIONAL
This P2 initiative has caught the imagination of lots of folks.

• 3000 patients with diabetes & congestive heart failure
• Family Care Network
• SeaMar Clinic
• NorthCascade Cardiology
• SJH Center for Senior Health
• St. Joseph Hospital/PeaceHealth
• Group Health Cooperative
• Regence Blue Shield,
• Community Health Plans of Washington
• Olympic/Sterling/Aon

SLIDE 4, PARTNERS & FRIENDS NATIONAL & INTERNATIONAL

• NATIONALLY
• Cambridge Health Alliance,
• Cincinnati Children?s Medical Center,
• Tallahassee Memorial Hospital,
• Hackensack University Medical Center,
• HealthPartners,
• McLeod Medical Center, and
• Whatcom County coalition
  
• INTERNATIONALLY
• 8 communities in Great Britain,
• 1 in the Netherlands,
• 1 in Sweden

SLIDE 5, LEARNING

• Advanced Access
• Patient input into design
• We did not have to wait
• Collaboration among all sectors
• Leadership by physicians for collaboration

So, in this P2 initiative what have we learned to date: a year and a half into it? Doing Advanced Access, in primary care and specialty care, seems to me to be the only thing that can free up people and time to take on the work of redesigning the acute care system into one that provides chronic care. HealthPartners and Jonkoeping County, Sweden point to this conclusion. We have been working with Catherine Tantau, RN. Others have worked with Mark Murray, MD. Patients are of surprising help in redesigning care systems. Their insights are generally lead to simpler and cheaper solutions that we imagine on our own. We could have been doing this 5 years ago. Without working together little will occur. The innovations almost all require cooperation of others beyond your organization. Fortunately the benefits are that diffuse too. Physicians can lead their organizations into cooperation. It will not happen otherwise.

SLIDE 6, 80/20 SYSTEMS THINKING

• Baby boomer demographic bulge
• Chronic care in acute care system
• Winners and losers (modeled)
• Collaborators (relationships between parts on behalf of all stakeholders)

There are a lot of things we all consider doing. but which are the most important? The biggest problem and opportunity is heading our way--the aging baby boomers. Chronic care accounts for almost 80% of the healthcare costs and it is going to get higher. If we can effect this dynamic it will have more impact that almost any other change. (Possibly at the same or lower cost for a given population.) We have reviewed the literature on chronic care, we have worked with our patients and our physicians. We have designed a system for patient-centered, community-wide chronic care management. We have modeled the outcomes. We know who the winners and losers are likely to be. Nothing big will happen if the winners don?? help the losers. Medicare, pharmaceutical companies, employers, and taxpayers will need to rethink their roles if the benefits are to be gained and sustained.

SLIDE 7, SOLUTION SPACES

• Care management and managers
• Navigators and insider advocates for patients
• Activated informed patients
• Group visits
• Shared care plan  (electronic and paper versions)
• Advanced access
• Results based advocacy

Our approach combines community-based care managers (nurses). Improved access to information for patients with DM and CHF and for the members of their care team. There are group visits, web access to tailored information and to a personal medical record called the shared care plan. I now call our previous medical records business medical records, not patient medical records. The shared care plan may be a step toward a real patient medical record. None of the changes are manageable in physician offices or with physician staff until excess capacity for seeing patients and for improvement work is created. Advanced access has this great side effect. Modeling the effects of the changes and getting those affected to participate in the solution is essential. Otherwise it is not sustainable. Medicare (thus Congress), pharmaceutical companies, local businesses and government, and patients as purchasers and voters.

SLIDE 8, INTERESTED PARTIES

• Robert Wood Johnson Foundation
• Institute for Healthcare Improvement
• Medicare (CMS)
• Healthcare insurance companies
• Our community as well as other communities and healthcare organizations
• Other foundations

The work and learning going on in Whatcom County has captured the interest of numerous organizations and communities. Many of whom we are working with. There are now 17 communities or healthcare provider organizations. We are hoping to spread this to Ketchikan, AK. beginning this year. We hope to spread to more of the patients and providers in Whatcom County.

SLIDE 9, COOPERATION

• Necessity or preference?
• System? ...or only parts?
• How? or YES!
• Leaders?
  

Somehow we think this is optional, on an organizational level. We do cooperate as individuals. Our organizations must understand the experience of the patients and design and connect our processes so that they work as a system. Peter Block has written a book called The Answer to How? Is Yes! It is a kind of Nike "Just do it!" attitude. On can delay starting assuming the worst and endlessly asking how, rather than experimenting and working our way forward together, with the patients. A new kind of leader is needed--courageous in collaboration, not in war.

SLIDE 10, MORE?

• http://www.patientpowered.org
• http://www.wwpp.org
• http://www.Google.com "Marc Pierson"
• Call Marc 360 756-6805
• http://www.ihi.org
• http://www.qualityhealthcare.org

You may find the details and the tools at these websites. Do feel free to contact me. I put some of what I think on my web log, as do many of the people working in this endeavor.

SLIDE 11, PARTNERS?

• Already down this road?
• Learn together?
• Tipping points?

The Institute for Halthcare Improvement is attempting to spread the learning from Pursuing Perfection communities.
We have time for those who want to transform healthcare locally, in their communities.

Thank you for your time and attention.

Link to Bellingham Herald Editorial

Link to more about program

Helping chronically ill manage care improves lives, cuts costs
HEALTH CARE: "Pursuing Perfection" program is so simple, it's brilliant.

The whole point of "managed care" started out, at least in theory, as an attempt to contain health-care costs through prevention. It's no secret that's not what happened. In fact, navigating the medical maze has become more difficult than ever, it seems.

But there is a solid movement afoot to change that and Whatcom County is one of the ground-zero sites for a program called "Pursuing Perfection: Raising the Bar for Healthcare Performance." Its method isn't complicated. It seeks to help people manage their own health care, sometimes by doing something as simple as regular telephone calls to check up on patients and answer their questions. By heading off potential problems, extensive and pricey hospital visits can often be avoided and a patient's health better maintained. It's so simple, it's brilliant.

The Whatcom Community Health Improvement Consortium last year was one of seven groups in the nation to win a $20.9 million grant from Robert Wood Johnson Foundation and the Institute for Healthcare Improvement that funds the program. It's not just some kind of feel-good program, either. The foundation wants to document measurable results in improvement of patients' access to care, patients' self-management and satisfaction, and a decrease in medical errors.

Caring for chronically ill people consumes as much as 70 percent of the nation's health-care dollars, so it makes sense that helping them manage their own conditions would reduce those costs and help those people lead more productive and less frustrating lives.

In Whatcom County, two of the most common chronic illnesses are diabetes and congestive heart failure. In 2000, St. Joseph Hospital had almost 700 admissions related to diabetes and almost 900 related to congestive heart failure.

Empowering patients with better information and better access to people who monitor their progress and can quickly answer questions can help keep many from becoming dangerously ill and compromising their health further. Medical advances happen quickly as new drugs are developed, more information is discovered about drug interactions and new technologies help people monitor their blood sugar. Keeping patients active in helping to make their own decisions will result in better outcomes. After all, who better to "manage" the care than the person living with the illness?

Balanced human interactions will make sense of some of the craziness that is US healthcare.

I would like you to read the very thoughtful and humane comments that Daniel Shurman makes. After a very difficult year he and his wife Bonnie have insights we should all reflect upon. There is nothing I can say that will add to his message.

Dan is responding to my post on Sunday, June 22, '03.

 

After reading the though provoking article Chronic Illness, Comorbidities, and the Need for Medical Generalism, by Kevin Grumbach, MD, in the first edition of Annals of Family Medicine. I had these thoughts:

The idea of non-reductionist thinking and wholistic planning is so important and so non-western. A reductionist nightmare.

Placing the patient at the center begins to make sense of things. I am not yet sure that we aren't trying to put the PCP at the center; even though that may move in the right direction in some cases.

With the help of Robert Wood Johnson Foundation, we in Whatcom County, WA are building a system to deliver "patient-centered, community-wide, chronic disease management" based upon Wagner's chronic care model. Even that model may be too physician centric. See my post.

Conidering the chaotic non-system and it's misaligned reimbursement, I am not sure that the overburdened PCP can help all the patients navigate. We are using nurse care coordinators Connie Golas and Nancy Stothard to assist, and we also use a patient centered/patient designed Shared Care Plan

I will follow your new journal with interest. As you poit out in the article, we should not be too self congratulatory. For even the best approaches in the US are very inadequate from the patient's perspective. See the Commonwealth Fund report (pdf)

A chasm exists. Any narrow focus on the parts, even the PCP role, risks a further Balkanization of US healthcare. We must focus on the patient and their family, we must include the patient in all the discussions. So long as the journals exclude patients from the dialogue they will miss an opportunity for truly integrative solutions. Even the PCPs may be a "specialists" compared to patients and their families.

Pursuing Perfection in Whatcom County is not an undertaking of convenience. It is a matter of commitments. Commitments have been made.

The prior five or six years of work by CHIC memebers were agreements and collaborations of convenience, we publicly promised nothing, we did things in our own time. Pursuing Perfection is different, we have made difficult promises to patients and we must keep them. As Karl Weick points out, to have true commitment one must state voluntarily, personally, publicly, and in an irrevocable manner what you will do. We have done this.

The Cluetrain Manifesto has something to do with Transparency and with Patient-centered and more. I had never seen it until tonight. It is definitely not business as usual.

This is something that a community could support and afford that may not be adopted by many small practices. If the usual adoption delay in health care, 10+ years applies, maybe it is on the horizon.

I have been watching and wanting this for about 7 years.

Bill Mahoney sends us a very useful web link: http://clinicalmicrosystem.org/ 

These folks give us much useful information on clinical work place improvements. Robert Wood Johnson Foundation supports their efforts. There is a strong team involved in the work and tools make available from this site. OD specialists and Process Engineers/Facilitators will find it useful as will folks in clinical work units.

For the pursuing perfection grant we have the challenge of creating spread of the innovations in care and also the challenge of implementing sustainable changes to the system.

At AMIA (the American Medical Informatics Association) this month I learned about a movement that is likely to make healthcare more sustainable: it is the internet communities that support patients with chronic diseases (each other) 24 X 7 at no cost and with high levels of user (patient) satisfaction. This movement is likely to reduce the pressure on over-burdened primary care physicians and specialists.

As Dr. Tom Ferguson says, "Condition-specific electronic support communities appear to be best at what doctors are worst at and worst at what doctors are best at."

I am trying to listen to some of my stakeholders and create a concise report so that they can keep up to date on our progress. Here is my first attempt: Marc's September Report. Do feel free to give feedback to me so that I can improve it.

Dr. Bertha Safford and Dr. John Hruby told an inspiring story about the teamwork that is developing in their Ferndale office. It is a real story of commitment and enthusiasm amid the press of a busy office. I will ask them to put their own story in electronic ink and get it out here for you to hear also. Teamwork, partnerships, collaboration, everyone doing their part across an office, a community, and hopefully a nation--Robert Wood Johnson Foundation's investment and encouragement is paying off from my perspective.

Please read Mary Minniti's comments on Exceptional Partnerships and Results One Patient at a TIme. She tells a compelling story of a collaborative approach to a failed patient promise as well as painting a picture of the amazing progress on several fronts.

Annie Gort's Patient Perspectives on Patient Education tells how patients do understand some of the pressures that weigh upon providers. It also begins to reveal how patients want communication to occur. Stay tuned or participate.

If you have not read Connie Golas' last post on a patient's emergency department experience (A patient's Rewards and Challenges) you will want to.

Improving health care will happen by putting patients at the center of all efforts.

I wonder if Userland could manage a "shared care plan". The key idea is that several (3-7) people need to be informed and in communication about a specific "data set".

I believe that Nicholas Riley had done this previously with Frontier Manilla or Radio.

Bill Mahoney begins the open dialogue on Patient Centered care when he posts:

Activated patientness is not a trait but a state. The state is created by the care team (in whatever form) providing patient-centered care. The only importance of patient traits is that they (e,g, locus of control, self-esteem, soci-economic status, location in the social structure) specify the probability of x level/type of patient-centered care activity resulting in y level of activation. The biggest barrier (if the focus groups done 2 years ago tell us anything) is not the patient, but the provider. Building patient-centered care (CCM's productive interactions) is identical to building team development (it is team development.....patient as full partner in the care team). The absolutely essential foundation of patient-centered care is the creation of team cohesiveness (see team measure) and this will require that providers redefine their role, the patient's role and the nature of the patient-provider relationship. My hypothesis is that few will be willing to go there and we may easily revert to blaming it on those noncompliant patients...an animal that does not exist. [Bill Mahoney's Radio Weblog]