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Patient Engagement: Experts Talk about Challenges

Trudy Lieberman
Monday, November 7th, 2011

This interview is the ninth and final of a series of brief chats between CFAH president and founder, Jessie Gruman, and experts—our CFAH William Ziff Fellows—who have devoted their careers to understanding and encouraging people’s engagement in their health and health care.

Trudy Lieberman is concerned that despite all the rhetoric, choosing the best hospital, the best doctor, the best health plan, is simply not possible.  Some of the so-called best might be good for some people but not others, and the information available to inform/guide choices is just too ambiguous.

Ms. Lieberman has been a journalist for 43 years and had a long career at Consumer Reports reporting on insurance, health care and health care financing She is a contributing editor of the Columbia Journalism Review and blogs about health care and retirement issues for cjr.org.  She is a CFAH William Ziff Fellow.

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Gruman: What has changed in the past year that has influenced people’s engagement in their health and health care?

Lieberman: Costs have risen a lot, and employers and insurers have made consumers pay higher deductibles, co-pays and coinsurance.  The theory is, if people have to pay more of the costs themselves, they will become wiser consumers.  Have they become smarter about selecting the most appropriate, lowest cost services?   Too many times, the choice people make is to postpone going to the doctor even when they may need to go.  Of course, that means they may forgo needed care.  Research is beginning to show that is happening. 

It’s also good to remember that we don’t have a real market in health care, even though health care sellers keep trying to tell us that we do.   One hospital administrator put it candidly; he said hospitals have to compete to bring more people to the hospital, and not necessarily to do a better job of treating them.  That’s what happens in a for-profit system, which he says is the “screwiest system ever designed.” 

High deductibles, high copayments and high coinsurance demanded by health care providers at point-of-service act as barriers to care.  This is not the case in other countries where care is generally free at the point of service.  Of course, citizens of those countries pay for their care through a system of taxes, and all are entitled to care.  Those social insurance systems work much like our Medicare program.  So, when people have to think about covering the high costs just to get in the door, it’s hard to see how they can engage with their providers when it comes to issues of treatment options and other quality-of-care concerns.

Gruman: What are some important challenges people now face in engaging in their health and care?

Lieberman: Sifting through all the marketing hype being thrown at us by the media is a tough slog.  We cannot even eat dinner and have the tv on without being pushed to ask our doctors about pharmaceuticals we may not need and diseases we don’t have.  All this is geared to snare the consumer into becoming a patient who needs a drug to cure whatever ailment is being promoted. As we approach insurance open enrollment season, consumers are bombarded by ads from health plans and hospitals.  How do we know if an insurer or hospital is legitimate or if there is really an arms-length relationship between the rater and those being rated?  How do we evaluate one scheme over another?  One hospital, for instance, may do a bang-up job on heart care but a terrible job on infection control.  And when you are choosing a plan, how do you know what ailments you’ll need care for?

There’s a lot of talk about transparency, but cost information is really not transparent.  The explanation of benefits people receive are anything but transparent for a lot of people.  And you really can’t figure out what prices insurers have negotiated with health care providers.  They are different for each one and they are deep, dark secrets.  So we really have to step back and see what’s realistic before tossing around such nice-sounding words and phrases as transparency.  What do they really mean and for whom?

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Additional Interviews with our Ziff Fellows on the challenges of patient engagement:

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Patient Engagement: Experts Talk about Challenges

Carol Alter
Monday, October 31st, 2011

This interview is the eighth in a series of brief chats between CFAH president and founder, Jessie Gruman, and experts—our CFAH William Ziff Fellows—who have devoted their careers to understanding and encouraging people’s engagement in their health and health care.

Carol Alter is concerned that “there is an assumption that every patient has a spouse or partner or daughter to” help with the health decision making.  But, “there often isn’t.”

Dr. Alter, who is the Director of Policy and Community Outreach and an Associate Professor in the Georgetown University Department of Psychiatry, is interested in the psychiatric care of patients with cancer, psychosomatic medicine and access to psychiatric care.  She is a CFAH William Ziff Fellow.

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Gruman: What stands out for you as a particularly important focus of patient engagement?

Alter: I am interested in what an individual is able to do for themselves.  What are their strengths and weaknesses?  To what extent can they be engaged?  And to what extent can the system facilitate that?

Gruman: How does this play out in your work as a psychiatrist?

Alter: I am now running the consultation-liaison service at Georgetown Hospital, so we see patients referred by their medical teams if there are concerns about psychiatric disorders or for other coping or mental health concerns. I saw a person recently who had developed paraplegia (inability to walk) after having spinal surgery. At the time we saw him it was not clear whether his functioning would improve or not.  His medical team wanted us to help with his anxiety.   The man is divorced, in his 50’s, retired from the government, but now working on his own as a consultant.  He has no kids, no partner, but he has a group of friends and an active church community, all of whom live about 60 miles away from the hospital.

Gruman: What is going to happen to him now?

Alter: Even though the medical team says they have explained the medical situation to him, including explanations regarding timing, chances for potential improvement (or not), next steps etc., he states that no one has told him anything about his condition or next steps. He is extremely upset; he can’t process the information.  He is resentful because he feels like he is being told what to do.  It looks like he will be sent to a sub-acute rehab facility where at most he would get 2 hours of physical therapy a day and that’s all.  Who is helping him think about this?  Who is advocating for him to get more or better?  If he had family, they would be advocating, “Why are you sending him to this place?  Why not another?  What treatment has the best chance of return to functioning?”

Gruman: Who is responsible in such a case?

Alter: While the hospital and the medical team have the responsibility to meet the patient’s needs for care, safety and comfort, there is also an assumption that every patient has “people” who provide support to them. What happens if the patient doesn’t have a father, mother, spouse or child to help guide the way?  While our hospital has implemented a number of quality based initiatives to improve patient communication, discharge planning and care coordination, they all rely upon an active, engaged patient or family in order to be maximally effective.  If the patient can’t fully advocate for themselves and if there is no one to do that on their behalf, the hospital is limited in what it can do to provide additional resources to be sure the patient is receiving the best discharge.

Gruman: I thought hospitals had to be prepared for such situations…

Alter: On one end of the spectrum, if someone lacks the cognitive capacity, the hospital and the legal system invoke a set of actions which allow others to help with decision making or to assure that the patients’ best interests are considered fairly.  But what if someone is cognitively intact, but has no social support, and they can’t adequately advocate for themselves?

For this patient, the primary physician said, “We spent hours with him.”  But this man needs something else.  He’s anxious, worried, alone, afraid.  He’s sick. He can’t bring everything to the table that he needs to do to make decisions.  The system assumes that there will be someone there.  There often isn’t.

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Additional Interviews with our Ziff Fellows on the challenges of patient engagement:

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Patient Engagement: Experts Talk about Challenges

Judith Hibbard
Monday, October 24th, 2011

This interview is the seventh in a series of brief chats between CFAH president and founder, Jessie Gruman, and experts—our CFAH William Ziff Fellows—who have devoted their careers to understanding and encouraging people’s engagement in their health and health care.

Judith Hibbard notes that “People take their cues (about engagement) from medical care, but health professionals are often not aware of the implicit and explicit cues they are sending.”

Dr. Hibbard is a Professor of Health Policy at the University of Oregon. She is the lead author of the Patient Activation Measure (PAM) and is an international expert on consumerism in health care.  She is a CFAH William Ziff Fellow.

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Gruman: What needs to be done to improve the effectiveness of interventions to improve people’s participation in their health and care?

Hibbard: I think there is great potential in trying to link engagement to what’s influential in people’s life – kind of like surround sound stereo.  We need to find more ways—methods, modeling—to help people understand their role and fulfill it.  This includes media, workplaces, communities, and schools.

It’s clear that one-size-fits-all doesn’t work.  Even for people who are more active, health care is overwhelming.  Breaking it down and taking it slower is easier.

Gruman: How can we get the attention of those who have little interest, willingness or even ability to engage in their care?

Hibbard: There is a segment of the population that doesn’t understand that it is important to play an active role in their health and health care—these are the people who score lowest on the Patient Activation Measure.  Depending on the population, that proportion can be between 15-30% and can be as high as 60%.  This is age-related and slightly gender related.

We tend to tell people they should do X, Y and Z—specific health-related behaviors—but don’t explicitly tell them they will do better if they are more involved in their care.

Frosch did a study—the key message that was experimentally conveyed was that you will do better if you are more involved in your care.  They found a dose response—being exposed to this intervention increased activation.  We need to be explicit about the benefits of engagement.  If a person doesn’t get this point, he or she won’t pay attention because they don’t see that it is their job, or may not see that it is in their interest.

Gruman: What is the role of the clinician in encouraging/helping people engage in their care?

Hibbard: People take their cues (about engagement) from medical care—but health professionals are not aware of the cues they are sending, nor is the delivery system aware of them.

For example, in our Fairview Health System study we were able to link the PAM score with whether the doctor encouraged the patient to use the patient portal and then whether they used it.   We found that doctors were more likely to encourage people who were more activated.  Among the group that was encouraged, the more highly activated were the ones who used the portal.

This is a reminder that health plans, clinicians, employers and the government offer lots of prompts and tools and services through community and delivery system but we have no idea who they are reaching—and it looks like (here and elsewhere) it’s the people who are already activated who use them.  Because we don’t measure this, we just don’t know.  Unfortunately, this doesn’t stop us from thinking we are doing fine.

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Additional Interviews with our Ziff Fellows on the challenges of patient engagement:

 

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Patient Engagement: Experts Talk about Challenges

Shoshanna Sofaer
Monday, October 17th, 2011

This interview is the sixth in a series of brief chats between CFAH president and founder, Jessie Gruman, and experts—our CFAH William Ziff Fellows—who have devoted their careers to understanding and encouraging people’s engagement in their health and health care.

Shoshanna Sofaer believes there is an important distinction to be made “between someone who is engaged in their health care and those who are in a confrontational relationship with the health care system.” 

Dr. Sofaer is the Robert P. Luciano Professor of Health Care Policy at the School of Public Affairs, Baruch College.  She conducts research and publishes on topics including the development of quality measures that resonate with consumers and patients; the development of tools patients and families can use to engage productively in their health and health care; and the response of the public and policy makers to the use of cost-effectiveness analysis to make societal resource allocation decisions.  She is a CFAH William Ziff Fellow.

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Gruman: What recent changes have affected people’s engagement in their health and health care?

Sofaer: I feel like the environment for this work has gotten bad.  The reason?  The zeitgeist of the times is about deep mistrust and people’s limited sense of hope that they can do anything about their own circumstances.  People have lost faith with all sorts of institutions and authority.  They are watching polarization in Washington and in their own communities and families.

Somehow the “truth” has lost importance.  Facts are not important.  This is the context in which asking people to change anything because of facts or evidence is a problem.  I guess, in a way there is an opening: for some people who have a sense of basic competence, they can say “I can’t depend on these institutions. I have to do this for myself.” 

Gruman: Do you think this phenomenon is fairly widespread?

Sofaer: Unfortunately, the people most in need of being engaged are the least confident in themselves.  This makes me very worried.  I don’t know how you ask people who are feeling so unsupported to take a chance on new behaviors.

 Certainly engagement refers to a new orientation to health generally, but any of the engagement behaviors implies a different role with regard to their health.  I’m not thinking about younger, computer-literate people.  I am thinking about older sick people—those who use the most health care, who need the most health care and who are being battered and buffeted by what’s going on.  The confluence of economic supports for people is being eroded: Medicaid will be harder to deal with; all kinds of local services and community programs are being cut back severely.  This doesn’t help our aims.

Think about the working single mom who has a kid with asthma.  She’s desperate to keep her job and afraid that her health insurance will be cut back (if she has any).  People are hurting.  The environment of the political dialog about the debt ceiling poisoned the atmosphere but also distracts us from looking at what the effects of cut backs are on normal people.  This makes our work harder – and more essential.  There isn’t a lot of hope out there.

Gruman: But this doesn’t seem to have put the brakes on the rhetorical use of the idea of patient engagement…

Sofaer: “Engagement” right now is a bumper-sticker phrase that is mostly rhetorical.

The bumper-sticker appellation means there are some people and institutions that will devote time and resources to it.  Among a subset of hospitals, there is a sense they have to address this.  But changing things to support engagement is not implementing interventions around what people should do—it’s making it possible for people to do the whole range of things they must do to function well.

There is a difference between someone who is engaged in their health care and those who are in a confrontational relationship with the health care system.  Many of the people who are writing about engagement think patients should confront their doctors and nurses and demand their rights.  People need to know how to help themselves without crossing lines but without taking clinicians off the hook.  This is a fine balance.  The nuance of this doesn’t get through.  Being engaged for your own health and your family’s doesn’t mean being an advocate for system change.  We need engagement at both the micro and “system” level but we need to recognize the difference.

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Additional Interviews with our Ziff Fellows on the challenges of patient engagement:

 

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