By the time Harvey Picker died in March 2008, he had devoted a substantial amount of time, energy, passion and resources to affirming his belief that every citizen of the United States was entitled to healthcare of the highest quality, and that the way to achieve that goal was to make patients full partners in the development and delivery of their care plan.

Shortly after Harvey’s death, Susan Frampton and Sara Guastello of Planetree, an organization of which Harvey thought very highly and to which he contributed many of the resources mentioned above, wrote a profile of Harvey, whom they describe as a pioneer of compassionate healthcare.

We at Picker Institute cherish these words from our friends at Planetree, and we think it is appropriate to revisit them at this time.

Click here for the profile of Harvey Picker.

Dr. Don Berwick and Picker Institute Executive Director Lucile O. Hanscom.

Dr. Don Berwick, the winner of the 2011 Picker Award for Excellence® in the Advancement of Patient-Centered Care, will give the Picker Lecture at the 5th International Conference on Patient- and Family-Centered Care scheduled for June 4-6, 2012, in Washington, D.C. Details will be posted on the Picker Institute Web site (www.pickerinstitute.org) as they become available.

Dr. Berwick received the Picker Award at the 23rd annual  IHI forum in Orlando, Fla.,  in December 2011, several days after he resigned his post as administrator of the federal Centers for Medicare and Medicaid Services.

Click here to see a clip from Dr. Berwick’s acceptance speech at the Picker Awards ceremony.

Conversations with Leaders in the Field of Patient-Centered Care:
Barbara Frank, M.P.A.

One of the ways Picker Institute supports patient-centered care is by recognizing significant contributions to achieving patient-centered care nationwide. “Conversations with Leaders in the Field of Patient-Centered Care” is a regular feature that highlights these contributions

In 2011, B&F Consulting worked with special-focus and critical-access nursing homes in four states through an Advancing Excellence initiative that led to improvements in staff stability and care outcomes. As faculty to the Quality Partners of Rhode Island (now Healthcentric Advisors) “Improving the Nursing Home Culture” pilot in 2005, they helped 254 nursing homes improve staff, resident and organizational outcomes, and co-produced Quality Partners’ Staff Stability Toolkit and the four-part CMS Web series “From Institutional to Individualized Care.”

Barbara led a team in the New Orleans Nursing Home Staffing Project that helped nursing homes recover from the aftermath of Hurricane Katrina, and co-produced a film with Louisiana Public Broadcasting, “The Big Uneasy: Katrina’s Unsung Heroes.” She co-authored Meeting the Leadership Challenge in Long-Term Care: What You Do Matters (Health Professions Press, 2011) with David Farrell and Cathie Brady, and Nursing Homes: Getting Good Care There (Impact Publisher, 1996) with Sarah Burger, Virginia Fraser and Sara Hunt.

Earlier in her career, Barbara worked for 16 years at the National Citizens’ Coalition for Nursing Home Reform in Washington, D.C., where she directed the landmark 1985 study “A Consumer Perspective on Quality Care: The Residents’ Point of View” and helped establish the national network of state and local ombudsman programs. She facilitated the Campaign for Quality Care through which providers, consumers, practitioners and regulators developed consensus on what became the OBRA 1987 legislation that refocused nursing home regulations on individualized care. Barbara facilitated the first Pioneer Network gathering in 1997, and in 2005 she facilitated the St. Louis Accord, a national gathering of providers, consumers, regulators and quality-improvement organizations that came together to improve clinical outcomes through staff stability and culture change.

Barbara serves on the board of the Pioneer Network and has an M.P.A. from the Kennedy School of Government.

You have a very long record of achievements in the field of long-term care and its need for patient-centered care, starting with your work with NCCNHR. What piqued your interest in this field?

The summer after my first year of college, I got a job as a home chore aide in Washington Heights in Manhattan. I lived in New Jersey, so it was an hour-and-forty-five-minute commute each way on buses and subways. And I loved it. I felt heart connections with so many of the people I helped out each day. I took them to clinic appointments, grocery shopping and Mass. I cleaned their houses, and all the while we’d visit. I learned a lot about the challenges and choices of aging, and I found role models and harbingers. My boss was Ann Wyatt, who became my mentor and friend. When I finished school, she introduced me to her friend Elma Holder, with whom she had just founded a national consumer advocacy group. Everything Elma talked about made so much sense to me, and for 16 years I had the amazing experience of getting to work side-by-side with her. She and Ann have nurtured me personally and professionally ever since.

You were very involved in the effort to bring about OBRA ’87 [ the Omnibus Budget Reconciliation Act of 1987 that set new standards for care in nursing homes], which many people regard as the first important breakthrough in changing the culture of nursing homes. How well has that legislation served the people for whom it was enacted? What is the need for an update?

I live by OBRA’s words that each home provides the care and services to “attain or maintain the highest practicable physical, mental, and psychosocial well-being of each resident.” That sets such a clear vision: No resident declines unless it’s a natural progression of the person’s condition or disease. We’ve come such a long way that it’s hard to remember the days when restraints were the norm. And we have a long way to go. I see such promise in the progression that is underway. It’s more than two decades since OBRA initiated a new wave of progress, and there’s so much moving it along: the Pioneer Network, culture change coalitions and all the organizations that take specific approaches to transformational change; the QIO network and the Advancing Excellence LANEs; and government action through MDS 3.0, QIS and QAPI. We have a growing understanding of the “how to” as we have more and more adoption of individualized care and staff engagement, and I think in the coming generation we will see the tipping point of the transformation of the norms of care in our field.

You were also involved in the formation of the Pioneer Network, which was truly a groundbreaking development. As a board member, do you feel Pioneer is living up to the expectations of its founders? What do you see as its role in the continuing culture change movement?

Our founders were very wise. They planned to hand over what they started to others who would make it their own, knowing that the best ways to move forward evolve. One of the most thrilling aspects for me about being on the inside of the Pioneer Network is to see how much they live in practice the values they support. People really talk things through, and everyone’s contribution counts. I think that’s a key to the Pioneer Network’s role—to foster continual growth and innovative development. We’re involved now in facilitating a national learning collaborative on using MDS 3.0 as the engine for high-quality individualized care. Assessment and care planning are supposed to be agile, just-in-time, inclusive processes, but instead they’ve been burdensome rote exercises in documentation. We’re helping homes make the care planning process come alive among the staff closest to the resident so there’s a give and take among the care team and with the resident. That’s how you individualize care.

Why is long-term care such a hard sell? It is almost literally the only health development everyone has potentially in common, and yet it doesn’t yet appear to have the star power of cancer or AIDS or the disease of the month. Is this massive denial, aided and abetted by our preoccupation—often to the absurd—with youth?

People fear living in an environment where they can no longer be themselves. The loss of personhood that comes with living in a place where you aren’t at home compounds the horrors of the diseases you mention. In 1985, NCCNHR asked people living in nursing homes all across the country what were the most important factors for quality care. The universal response was “kind, caring staff who know me as an individual and help me continue to live out my days being myself.” That still holds true today. That’s what’s so important about the drive for individualized care through which nursing homes help people live according to their lifelong customs and routines. For all of us, our patterns of daily life and relationship are the foundation for our well-being.

How much of your work is directly with elders? Do they have places in all the organizations you’ve been a part of? Are they advocates for themselves? Of course, we will all be old some day, so perhaps age is irrelevant here.

At B&F Consulting, Cathie Brady and I work directly in nursing homes and then also with networks of stakeholders. Elma Holder’s words echo in my mind every day as I work—to keep the resident’s needs, perspective and experience at the center of my thinking. We generally work with staff and management to support their ability to help residents have the best possible experience. We help staff work better together, and as their ties strengthen, they are better able to support residents. We often use “discovery assignments” in which we encourage staff to ask residents about their experience, or to have the experience themselves, such as wearing an alarm, sitting in a shower chair, lying in a resident’s bed to feel, see, smell, hear. The more we can help management and staff personalize the experience, the better they know how to care for residents.

“The Big Uneasy” was very moving. It is always a wonder to see the heights to which people can rise under pressure. How have you disseminated the DVD? It deserves a huge audience.

Nursing home staff really were the unsung heroes of Hurricane Katrina. They were first responders to the nursing home residents they safely sheltered for days, weeks and months as the entire area collapsed. We had an amazing group—Cathie Brady, Dr. Susan Wehry and colleagues on the ground in New Orleans—that teamed up to provide support as nursing home staff worked to recover. Hearing what they faced, and how they faced it, we were just in awe of their full-hearted courage and compassion. In our last year working with them, as life started to regain some stability, we felt a need to make sure others knew the truth about what they had done, because so many people have the wrong idea of what actually happened. We filmed interviews with staff from six of the homes. It was hard for them to relive it, but they were determined to do so because they believed that by sharing their experience they could help others who might someday face similar circumstances.

We’ve shown it as part of disaster preparedness training with Jocelyn Montgomery from the California Association of Health Facilities, and people have found it to be a perfect primer for emergency readiness, because people speak concretely from real experience.

Linda Sadden, the State Ombudsman oversaw our work, and Louisiana Public Broadcasting produced the film, which was funded using civil monetary penalty funds. The ombudsman’s office sent copies to every state survey agency, ombudsman, QIO and provider association, and sends out bulk orders at cost. You can also order a single copy from the Pioneer Network (www.pioneernetwork.net/Store/BigUneasy/).

What do you see as the most formidable obstacles to reforming nursing homes? How can they be overcome?

Corporations have a huge influence on health care now, and they need to take a page from the “stop doing” list David Farrell included in our book, Meeting the Leadership Challenge in Long-Term Care. We’ve worked with some outstanding corporations who understand that to do well as companies, they need to do right by their staff and residents. But too many corporations have gotten too far away from the basics of good business. They focus on today’s census and profit rather than on how to invest in the people and systems needed to provide good service.

Corporations need to foster innovation and understand that caring about and listening to their staff is the best way to assure good care for residents as well as good performance for their organizations. I’ve seen some amazing examples of high-performing corporations, and very capable, caring administrators and directors of nursing whose good management and people development have been the bedrock of good care.

The best management practices are bottom up—and yet too many corporations don’t listen to and don’t support their administrators and DoNs. Too often these on-site leaders are micro-managed with questions like “Why did you spend so much on broccoli crowns?” or directed to take actions that break trust with staff, such as staffing to census. We’ve watched time and again as good administrators have had to leave because they were not well enough supported by their regional directors and corporate bosses, or because they faced situations that required them to act against their conscience. The turnover of good top leadership shatters an organization.

We have a strong body of evidence about effective leadership and human resource practices. If corporations would adopt these practices, we would be well on our way to good care for all.

Many of your accomplishments have been the result of collaboration. Can you tell us a little about those experiences?

I believe very strongly in the power of collaboration. When people with different points of view get together, they often find they have far more in common than they originally thought. That’s been powerful in building a national movement, it’s powerful in a learning process and it’s been a powerful force in my life.

One of the ways Picker Institute supports patient-centered care is by recognizing significant contributions to achieving patient-centered care nationwide. “Conversations with Leaders in the Field of Patient-Centered Care” is a regular feature that highlights these contributions. This Conversation is with Dr. Charles Burger, a strong proponent of the problem-knowledge coupler principle.

“The problem-knowledge coupler principle is simple: Gather a large number of variables (medical history findings, physical exam findings, laboratory data) and use a computer to sort them into all the diagnostic or treatment possibilities for a patient’s unique clinical situation.”

Charles Burger, MD
“The Use of Problem-Knowledge
Couplers in a Primary Care Practice”

In 1968, Dr. Lawrence Weed, a physician researcher, posited that the rapid growth of medical knowledge was creating a demand for new ways of providing information in support of evidence-based medical practice. Following his own passion for a disciplined approach to medical record documentation to optimize the care provided to each individual patient, he developed the problem-knowledge coupler.

Problem-knowledge couplers comprise a sophisticated, evidence-based diagnostic and treatment decision support tool, embedded in technology, to manage condition and disease, reduce life-style risk and provide primary care. Couplers match unique patient information and unique characteristics with an extensive medical database to provide guidance tailored to unique individuals.

Couplers are developed through a collaboration among clinicians, informaticians and librarians. They recognize that functionality must be predicated upon combining unique patient information, gleaned through relevant structured question sets, with the appropriate knowledge found in the world’s peer-reviewed medical literature. Two pilot studies indicate that couplers can meet the gold standards of decision making within both a primary care and a specialty practice.

Issues remain about how to best integrate problem-knowledge couplers into clinical practice and whether large-scale outcomes research will support the findings of pilot studies. However, problem-knowledge couplers represent a promising approach that might portend a new model for healthcare delivery in the next millennium.

Dr. Charles Burger, the medical director of Evergreen Woods Primary Care in Bangor, Maine, has been working with computerized problem-knowledge couplers since 1984. Click here to read his article about their use in a primary-care practice, which appeared in the Spring 2010 (Kaiser) Permanente Journal.

Dr. Weed proposed his problem-knowledge coupler theory in 1968 with his article on “Medical Records That Guide and Teach.” More than 40 years later, the idea seems to be a novelty still, yet people like you, who have incorporated it into practice, have nothing but praise for it. Why is it taking so long for it to catch on?
This is by far the most complicated issue here. Physicians who are concerned that it is not “experiential” enough have probably never even used the tool. However, more and more often, thoughtful physicians are recognizing that the job we are trying to do is cognitively impossible  due to the complexity of the information that we have to deal with, and that they’re unable to keep in mind either generally or specifically all the elements of the cases they’re dealing with.

As with all tools, one must be trained to use it. That takes time and commitment. And as with all learning, one goes from novice to master over a period of time, and that can be a significant barrier.

One must follow the path I outlined in the article—reorganizing your practice around the use of new software—and that is a difficult process. It takes a commitment to certain principles to push through on that.

Finally, I am sure that many physicians are offended by the thought that they need a tool for their brain!

Dr. Weed was the president of PKC (Problem-Knowledge Coupling) Corp. in South Burlington, Vt. Do you think there is any onus attached to the fact that the theory has been commercialized?
It’s sad that Dr. Weed is no longer the president—he was forced out a couple of years ago, and I think this has been a disaster. But I do agree that the commercial product limits success to a certain level. I know it is the commercial aspect that dismays some of the leading names in healthcare  and that many professionals support the idea but are dissuaded from actively moving it forward.

Early on, Dr. Weed tried to interest the Library of Medicine, as well as the NEJM, in taking over the project, but nothing happened. It should be managed as though it were an open-source software company.

Forty-two years of technology have brought us a long way. Do you think early reluctance to buy into the proposition had anything to do with the amount of work it must have required, which must have been staggering, before it was fully computerized?
There has been a considerable evolution of the product, but I am not sure that the lack of technology has had anything to do with the reluctance to embrace the science.  Look how slowly physicians have adapted to the EMR!

Is there any proof that PKC results in better outcomes more often? Have those measurements been made?
There have not been enough good studies to say one way or the other. Does the science enable doctors to be more thorough? Yes! Does the patient get better information? Yes! Do I feel that the reliability of the system improves by using them? Yes! Outcomes are a system function, and no single tool can improve them by itself , any more than the medical record can. The problem is that we do not have a system in medicine that has feedback loops so that we can get wiser over time. Here’s a schematic outline of what that process might look like.     

 In his new book, Thinking, Fast and Slow, Nobel-Prize winner Daniel Kahneman  points out the inherent biases that are built into our decision- making process. These same biases are at work when physicians make patient-care decisions. Couplers provide at least some protection against these biases by forcing us to collect all the relevant information on patient problems up front before considering options. We know, for instance, that on average providers make an initial diagnosis within 30 seconds of talking with a patient. From that time on they look for information that confirms that judgment and ignore that which refutes it (called confirmation bias).

Have there been attempts to integrate this science into medical curricula? If so, where have they succeeded?
Sadly, no, though I am trying very hard to put the program in the hands of medical students.

Where can PKC go from here?
Without tools like these, patients take a risk every time they visit their healthcare provider, and I think it is inevitable that this very important technological development will become as vital a part of healthcare as MRIs and CT scans. In my own practice, we have successfully integrated a sophisticated clinical support system into our busy primary-care practice with no loss of productivity. We have standardized inputs at the front end (itself a quality gain),with the variations occurring in the outputs (options) generated by each unique patient situation. We have minimized the chances that the rare or unusual case will be missed, and we are able to provide detailed, current information for the patient. We have shown that it can be done. The only question is whether the profession is willing to minimize the limitations of the human mind to deal with complex data through the use of new tools, and I think that with good, strong leadership that can be accomplished.

Dr. Weed’s new book, Medicine in Denial, published in March 2011, offers a very clear blueprint for using PKC to build a healthcare system that would serve as a hope for the future rather than what it is now, a looming liability.