Dec 042012

A little knowledge can be a precious thing, especially when it comes to health care management. According to researcher Judith Hibbard, it’s an essential component of what she calls “patient activation”: having the knowledge, skills and confidence to manage your own health and health care. Hibbard has led the field in developing ways to measure just how activated patients are, and to use that information to more effectively tailor interventions .

Hibbard and her colleagues developed a 13-item Patient Activation measure (PAM), a questionnaire clinicians can use to assess a patient’s activation level. It categorizes people into one of four levels, with those at Level One being the least activated, and those at Level Four having the confidence and skills to face whatever comes their way.

Hibbard explains that the PAM is being used to “help clinicians better meet patients where they are. People who don’t have a lot of confidence, or who have failed in managing their health or health care, can feel pretty discouraged and overwhelmed by the whole business of taking care of their health.” The process, she says, helps patients “understand what they’re brining to the interaction. And clinicians can develop care plans that are much more appropriate, helping the person or family to take small steps that are achievable.”

Health coaches have found the PAM, or a similar tool, the Patient Activation Assessment, to be very useful in their work. According to Risa Hayes, a coach and program manager in Colorado, her group uses the tool in two ways, measuring not only where patients are at the start of an illness, but where they are after participating in coaching. Her colleague Hilarea Amthauer says that coaches use the PAM to “talk to patients about their goals once they leave the hospital. It might be working in your garden, going to your grandson’s basketball game, or just not going back to the hospital.” With those goals in mind, clinicians can begin to understand just where a patient is—and where she’d like to be.

Hayes said it could be that a patient “does not have a lot of positive emotion, and is not ready to start setting a lot of goals. Standard operating procedure is to give everyone sheets of paper, lots of instructions, and phone numbers. It’s just useless for someone whose PAM is a Level One.”

Instead, patients and clinicians need to establish small goals that can be achieved, and that are meaningful in the patient’s life. From there, patients gain the confidence they need to achieve higher activation scores.

And that, Hibbard’s research shows, can lead to better health and health outcomes. She has found that people are more likely to get preventive care, screening, and immunizations; to eat a healthy diet; and to exercise regularly. Different indicators, such as body mass index and cholesterol levels, are more likely to be in the normal range.

Having increased knowledge and confidence is especially important for older patients who have multiple chronic conditions, those nurse Elaine Cannon calls “the sickest of the sick.” In her experience as a visiting nurse in Rochester, New York, Cannon says her role has changed. “As a nurse, it was always a “do-to” type position.  In coaching, you lead the patient to take more ownership of the situation.”

Melissa Wendland, of the Finger Lakes Health Systems Agency in upstate New York, says that patient activation changes the health care dynamic. “Patients are being  supported  in their autonomy. They’re recognizing their competencies. It’s a very different approach for health care.”

Danny Sands, a physician who founded the Society for Participatory Medicine, concurs. “You have to be a participant in your own health care—it’s not a spectator sport. When patients are more engaged in their health, they follow the plan, they have better outcomes, and everyone is happier.” Hibbard suggests that those looking to be more engaged try a few simple things. “Break things down into smaller steps. Take a focus on one thing at a time, and don’t feel overwhelmed by all [clinicians] are asking you to do.”

Mary Minniti of the Institute for Patient- and Family-Centered Care suggests that any time you leave a doctor’s appointment, you should be able to answer three questions: “What’s the problem, medically? What can I do about it? And are there danger signs or things that mean I should get back in contact with you? If you can’t answer those three questions by the time you leave the office, you need to know it’s not a failure on your part, or the clinician’s part—it’s the system’s fault. It’s valid to say, ‘I’m not ready to leave yet. Who besides the doctor can help me to know what I need to know?’”

 key words: patient activation measure, patient activation, care transitions, self-management

Jul 202012

by Phil Burgess

There are two views of aging in America.

In one, a 70 year-old woman drives another to the doctor.  Across town, a later-life adult takes an even older neighbor to do her grocery shopping and then helps her bring the groceries into the house and makes sure they are properly stored.  When arthritis keeps a home-owner from installing his new storm windows, two volunteers go out to get the job done.  This is the view from the ground, where people are “aging in place,” where real people live, work and play.

There is another view.  That of the hand-wringing analysts and “big thinkers” who tell us that boomers are retiring at the rate of 10,000 a day for the next 18 years; that the number of Americans 65 years or older is about to double – from 35 million in 2000 to more than 70 million in 2030; that Social Security is headed for bankruptcy and Medicare has unfunded liabilities measured in trillions.  To some extent, they are right because our elected leaders are unwilling to address entitlement reforms and new approaches to taxes and spending that are required to get us on the right track.

But at the community level, enterprising Americans are problem solvers, not analysts and finger pointers.  They figure out who needs what and then set out to make it happen.  Somewhere along the way they invariably form a non-profit association to bring people together to get the job done.  Indeed, the American “do-it-yourself” tradition of forming local, voluntary associations to solve problems has deep roots in our culture.

The British statesman and political philosopher Edmund Burke called these voluntary associations the “little platoons” of society and argued that society’s little platoons will out-perform and out-innovate the big battalions of government on most days on most issues – especially human services.

I was privileged last week to see a pioneering and highly-effective little platoon up close.  Founded in 1993 and called Partners in Care – known as PIC – it is headquartered in Pasadena on Ritchie Highway.  Driven by feisty professional women, starting with CEO and co-founder Barbara Huston, and a steadfast, high-energy staff, PIC is dedicated to changing the experience of aging by enabling aging adults to remain in their own home, townhouse or apartment throughout their bonus years.

Last year, for example, PIC member-volunteers, most of whom are themselves seniors, contributed tens of thousands of hours to helping other seniors – including more than  9,000 rides for more than 160,000 miles of “door-through-door” and “arm-in-arm” transportation services.  Most transportation is for medical services – doctors’ appointments and the like – followed by grocery shopping and running errands such as banking and the post office.

PIC member-volunteers also provide home maintenance and handyman services that include fixing leaky faucets, changing light bulbs, painting, cutting the grass and installing home safety equipment – such as grab bars, railings, shower seats, and toilet risers.

PIC’s “lifeline” service provides a personal emergency response – e.g., “I’ve fallen and I can’t get up” – to help older adults live safely at home, providing a sense of security to those living alone and to their families, who may live down the street or hundreds or even thousands of miles away. And PIC provides advocacy services to help elders resolve issues with others in the community such as utilities and landlords.

Here’s how this little platoon works.  When PIC members provide a service, such as transportation, their time is “banked” in the PIC “time-exchange” – like a savings account.  “Though no one who needs a service is denied,” according to Huston, “the PIC exchange is based on the premise that everyone has time or talent to contribute – even if it’s to read a book to an elder with impaired eyesight.  When a member volunteer performs a task or service for another member, he or she earns credit hours that are banked for a later date or donated to another person.  By sharing skills among a large network of people, a community is created, the activities of daily living are accomplished, and people receiving help feel better because they earned it.  The result: Seniors are able to live at home, independently, well into later-life.”

The fact is most Americans in their bonus years are eager to use their gifts of time, talent, and treasure (including experience, not just money) to help others or repair that part of the world they can affect.  Part of PIC’s mission is to provide a way to channel that desire in the service of others.

PIC’s “virtual retirement community” is managed by a small staff.  Compared to assisted living, which can cost as much as $8,000 a month, aging-in-place seniors, who require fewer services, are served by PIC for less than $60 a month .  That is an advantage of a little platoon, “virtual community” approach to the growing national problem of longevity, an approach invented here in Anne Arundel County,.

Still, that $60 has to come from someplace.  The biggest single slice is earned income from The Boutique, located at 6 South Ritchie Highway, where people donate upscale used clothing, jewelry, furniture, glassware and other household items.  All donations and revenues from sales are used to support PIC programs that help older adults remain independent, living in their own homes.  The rest comes from competition for government grants (less than 10 percent), foundation grants, fundraisers and, most importantly, individual donations from community supporters and stakeholders.

Partners in Care is a community treasure.  Not just because it allows people to live out their bonus years at home.  Not just because it provides opportunities for older adults to use their gifts of time, talent and treasure to give back.  And not just because individuals aging in place dramatically reduce demand for taxpayer-funded medical and social services.  Partners in Care is a community treasure because it gives the rapidly-aging population of Anne Arundel and surrounding counties opportunities for giving back in the form of in-kind work and social engagement which, together, are the best predictors of successful aging.  As Marie Beynon Ray put it, “The only [later-life] choice that can’t be justified is retiring to a life of do-nothingness.”

Writer Phil Burgess, a columnist for the Annapolis Capital Gazette, is the author of Reboot: What to Do When Your Career is Over But Your Life Isn’t.  This post originally appeared in the Capital Lifestyle section on July 15, 2012. He is the president of the Annapolis Institute, and is interested in hearing from others about their post-career experience. You can email him at [email protected].

Key words: caregiving, community organizing, volunteer bank, aging in place, Partners In Care,

Mar 272012

From Dr. Joanne Lynn, Director, Center for Elder Care and Advanced Illness, Altarum Institute 

“Nothing about me without me!”  That’s the cry of the disability community and the AIDS community and so many others affected by health care dysfunctions.  But for the elderly, thus far, it has been acceptable for everyone else to shape the care system – the doctors, the drug companies, the Congress, the managed care companies, the care coordinators, and on and on. But where are the voices of the elderly?  When do we hear from the folks providing support and love for disabled elderly persons? 

We desperately need that voice.  Without it, we are prone to make decisions in the interests of the status quo or to prioritize myths and provider interests that don’t match what elderly people and their families most need.  The frail and ill elderly are only sometimes able to voice their own needs – but they mostly have family who love and support them, and those family caregivers can become the key to building an efficient and reliable set of supports and services.

Most of us are now or will be family caregivers – and now, most family caregivers are overwhelmed, unorganized, and voiceless.  We need to change that.  Family caregivers need to speak up on behalf of their elderly loved ones, and themselves, and push back on commonplace presumptions as to what matters most at this time of life.  But those of us who are not right now overwhelmed with care needs need to make it easier for family caregivers to have a voice!

That’s the point of our “Agitator’s Guide” ( We’ve drafted up some specific things anyone can do—RIGHT NOW—to improve the lives of frail elders in your community.   We are looking for your advice.  Tell us what possibilities strike you as worthy.  Try one or two out, and let us know how it goes.  All of us aging persons need to weigh in on this and hit upon some acts that change the power of inertia – that is, “keeping doing what we’ve been doing” – which gets us nowhere. 

The time for speaking out is now – we risk being overwhelmed with the costs and challenges of elder care as the numbers double. We must make services appropriate, reliable, and efficient.  Let’s try out some avenues and see what works!

key words: eldercare, advocacy, quality improvement, patient engagement

Feb 212012

By Suzanne Mintz President and CEO, National Family Caregivers Association

Across the chronic care continuum there are only two people who are consistently present, a patient and that person’s family caregiver. Family caregivers are acknowledged as the nation’s primary providers of long-term care, but they are not equally acknowledged as primary providers of their loved one’s non-acute healthcare needs. Family caregivers are like undocumented aliens, they have no official status and there is no official record of their existence. There is significant research about the impact that family caregiving has on the health and wellbeing of family caregivers, but there is very little on the impact that family caregivers make in the lives of their care recipients or on the healthcare system as a whole. We know that:

 Persons with multiple chronic conditions are the most vulnerable and medically expensive members of society. Their care consumes approximately 75% of all healthcare dollars.

 Family caregivers provide 80% of the care for this cohort of the population, most of who reside in the community.

 Family caregivers are ill prepared for their “job” as homecare aide, nurse, advocate, physical therapist, etc. There is no organized mechanism for providing the education, training and support family caregivers need.

Medical records are the official documents of the healthcare system. They provide the information on which care plans are developed, insurers pay claims, and the course of an illness is tracked. Yet nowhere on medical records is there a place to record the name of a person’s family caregiver or the fact that someone is a family caregiver. There is a serious disconnect between the day-to-day reality of chronic illness care and traditional healthcare practice and payments.

Until there is a place on medical records to identify who is and who has a family caregiver:

 American healthcare will not be able to truly alter the way it provides care for those with chronic conditions.

 Family caregivers will continue to be relegated to the category of nuisance rather than taking their rightful place on their care recipient’s health care team, one who has intimate knowledge of the patient that is not available to any other team member.

 There will be no mandate for providing family caregivers with the education, training, and support they need to both be a more confident and capable care provider and also a responsible steward of their own health.

 There will be the lost opportunity for research on the impact family caregivers have on their loved one’s health and wellbeing, healthcare costs, the value of different educational and supportive interventions, and caregivers’ own health behaviors.

As we move toward the implementation of electronic medical records and coordinated care it is more important than ever that we address this issue. It is imperative that going forward medical intake forms and official records capture information on who is a family caregiver and who has a family caregiver. Without recognition of the chronic care dyad the treatment of those with long-term chronic conditions cannot be as effective and efficient as possible, and equally important, family caregivers will not regularly be evaluated for the healthcare risks to which they are prone. For all the reasons stated above it is time for family caregivers to be given official recognition as full-fledged citizens in chronic illness care.

Key Words: family caregivers, care plan, public policy, patient activation

Oct 242011

Dr. Joanne Lynn describes Project RED (Re-Engineered Discharge), a program developed by Dr. Brian Jack and his colleagues at Boston University. It is designed to help hospitals to re-engineer their discharge processes, and offers some free online materials and guidance, as well as IT-enabled patient transition aids. You can read more about the details of the program on its website at:

And you can listen to Dr. Lynn describe it below.

Key words: Care transitions, discharge planning, health information technology, Project RED

Oct 032011

In today’s installment of the video series on improving care transitions, Dr. Joanne Lynn describes three crticial elements for ensuring smoother transitions. These are standardizing the process (in part by mapping what you do now and understanding how the current system works–or does not); activating and mobilizing patients and caregivers to take charge of the transition, to know what is going on, what to expect and how to recognize when things are falling apart; and ensuring good information flow among all settings and with patients and caregivers.



Key Words: Care transitions, quality improvement, process standardization, patient activation, information flow

Jul 082011

Despite widespread interest in the $500 million budget allotted for Community-Based Care Transitions Program (CCTP) under the Affordable Care Act, many stakeholders are confused about the exact nature of the program. What does it aim to do? Who is eligible to apply for the funds?

Aim: CCTP aims to improve the reliability and effectiveness of care transitions as evidenced by reducing hospital readmissions. CCTP participants are paid to improve services targeted fee-for-service Medicare beneficiaries, the population requiring the most frequent care transitions. The backbone of the program in most places will be cooperation of service providers in a geographic community, since the participation and engagement of many stakeholders who share in the care of the area’s patients appears to be essential for sustained excellence.

Eligibility: To be eligible for funding, every applicant must have a minimum of one Community-Based Organization (CBO) and one hospital. While a hospital on CMS’s list of high readmission hospitals by state can lead a proposal, the payment will still go to the CBO, making lead authorship rather trivial. Priority will be given to eligible entities participating in programs run by the Administration on Aging (AoA), or that serve the medically underserved, small communities, or rural areas.

Financing: Foremost, this is not a grant! Payment is based on a blended rate proposed in the response to the solicitation, paid “per eligible discharge” and heavily based on the type of intervention. The blended rate can reflect different costs for different categories of patients and can include such elements as ongoing supervision, monitoring, administrative costs, and so on. Most important, however, it does not include initial training: Sites must have some previous experience with care transitions, so they must have paid for initial training. CMS payment also cannot directly support travel expenses for attending the required meetings in Baltimore (the cost of this must come from some other source).

Applicants are required to use the worksheet provided by CMS. No payments will be made more than once in 6 months for each beneficiary. In other words, CMS will not pay for re-treatment of patients for whom first efforts to prevent rehospitalization failed. Keep in mind that, although the program will run for 5 years, the initial award is only for 2 years, with possibility of renewal annually thereafter.

Intervention: CCTP interventions must target Medicare beneficiaries who are at high-risk for readmissions, based on criteria provided by HHS, or for substandard care post-hospitalization. Interventions cannot duplicate already required services. You must be willing to participate in collaborative learning and redesign (including data collection). Finally, and not surprisingly, your intervention must save money overall, and show savings within two years.

CMS’s measures so far include:

Outcome measures

  1. 30-d Risk-adjusted all-cause readmission rate (currently under development)
  2. 30-d unadjusted all cause readmission rate
  3. 30-d risk-adjusted AMI, HF, and Pneu readmissions

Process measures

  1. PCP follow-up within 7 days of hospital discharge
  2. PCP follow-up within 30 days of hospital discharge

“HCAHP items” – (note – includes more than HCAHPS)

  1. HCAHPS on medication info
  2. HCAHPS on discharge info
  3. Care Transitions Measure (3 – item)
  4. Patient Activation Measure (13-item, see:

Note: There are some areas where the solicitation is unclear or internally inconsistent.

Key words: hospital readmission, care transitions, 3026 funding, evidence-based intervenitons, patient activation measure, budget worksheet, financing, medicare beneficiaries, payment rate, CMS

Jul 052011

The Agency for Health Care Research and Quality (AHRQ) Effective Health Care Program site encourages patients to be proactive in making treatment decisions, offering a series of how-to guides, treatment guidelines, and real-patient stories about making health care decisions. The site puts the results of various research studies into plain-language information for consumers and families. According to an AHRQ press release, the campaign aims to increase consumers’ involvement in their care by providing easy access to unbiased information about treatment options and tools. It features television, radio, print, web and outdoor ads encouraging consumers to visit AHRQ’s Effective Health Care Program website to find plain-language guides that summarize the scientific evidence on treatments for numerous medical conditions.

Several of the guides should prove useful to patients and caregivers, including older adults and those facing end-of-life decisions, In particular, a series of tips on how to get the most out of visits to doctors’ offices and how to work with doctors provides useful information on medication management, talking about symptoms, and understanding treatment options and decisions. Also useful is a self-assessment, the Health Priorities Snapshot, aimed at understanding quality of life issues; patients rank the importance of being able to engage in common daily activities while undergoing treatment.

The treatment option guides range from issues surrounding heart health and musculoskeletal problems to mental health and pregnancy and childbirth. None of the guidelines, however, speak directly to issues facing frail elders and their caregivers; there is nothing on living with a serious illness that will prove fatal, for instance, or on treatment decisions surrounding Alzheimer disease. The site does a good job of encouraging patients to be partners in their care, and over time, perhaps, guides of special interest to older adults and their caregivers will be added.

“We see the best outcomes when doctors and patients work together to come up with a treatment plan that takes into account the patient’s quality-of-life concerns,” said AHRQ Director Carolyn M. Clancy, M.D. “Information is power in health care, and this campaign will provide patients with the information they need to become partners with their doctors in their health and health care.” The ads and the new website features can be found at

Keywords: patient decisionmaking, patient activation, treatment options, social marketing, evidence-based treatment guidelines