Design Options for a Self-Management Support Program (continued)
Staffing addresses the people who actually provide the support
to patients. Within the primary care model, self-management support
responsibilities often are delegated to a non-physician member of the
staff—such as a nurse or possibly a medical assistant—who can devote more time
and attention to self-management support than the physician. But the primary
care physician often plays a role as well. An action plan frequently is used to
facilitate collaborative decisionmaking between the primary care physician and
the patient and to facilitate followup in subsequent primary care visits. In
many cases, limited office resources for self-management support are
supplemented by referral or collaboration with other resources in the community.
Many external programs staff their call centers with nurse
care managers, but the programs differ with respect to the qualifications
sought for these positions, seemingly reflecting uncertainty in the field
regarding care manager core competencies. While some programs seek nurses with
backgrounds in the specific disease—e.g., 2 years in acute care cardiac
settings—others stress the importance of interpersonal skills over medical
knowledge, i.e., the ability to focus on a patient's goals rather than solely
on the disease. Some programs distinguish care management skills (with the
focus on coaching and behavior change) from prescriptive educational skills
and/or more traditional nursing skills. Others distinguish between generalists
and specialists, seeking primary care and "broad rather than deep" backgrounds
rather than masters-level nurses. Some emphasize motivational skills and the
ability to foster self-efficacy rather than patient dependency. Other
attributes include empathy and compassion, as well as computer and telephone communication skills.
A Request for Proposal (RFP) for a self-management support
contract may determine staffing levels and qualifications, including whether
and how non-nursing staff will be used. Some programs use staff with other
backgrounds to help provide self-management support. These include social
workers, pharmacists, dieticians, behavioral or mental health specialists,
licensed practical nurses, medical assistants, and patient coordinators.
Programs may use non-nursing staff in the call centers, along with nursing
staff; staff with less medical knowledge focus on tasks such as prompting or
"nagging" and transition the call to one of the nurses in the center when a
medical care issue arises. Some programs specifically look for people with
roots in the community—e.g., nurses who know the community resources, in some
cases, and lay health workers or "promotoras,b in others.
Staffing decisions involve a number of tradeoffs. On the one
hand, nurses have greater medical knowledge and may be viewed as more
acceptable to primary care physicians whose support the programs want to
obtain. On the other hand, nurses are expensive and in short supply. Some
individuals interviewed for this report also argued that nursing training
frequently does not emphasize behavior change interventions. Some characterized
nursing education and the nursing profession as hierarchical and prescriptive
and questioned whether other backgrounds might not be better suited to work
collaboratively with patients. One informant stressed that staffing should be
based on an assessment of major problems in the population and areas needing
improvement. More than one informant discussed the need or potential for
greater specialization in self-management support, differentiating
self-management support tasks and looking for people with different skills for
different tasks. The argument here is that coaching people on exercise takes
different skills than discussing medication side effects; remote
self-management support interaction requires different skills than face-to-face
self-management support. Staffing levels and qualifications are directly linked
to cost issues, and the argument in favor of specialization emphasized the
possibility of greater reach for the same amount of investment. Smaller
caseloads also are more expensive but are needed for high levels of personal
b. Promotoras are outreach workers in Hispanic communities who are responsible for
raising awareness about health and education issues.
The multiple staffing considerations described above reflect
the wide variety of tasks that self-management support staff are frequently
expected to perform and the variety of services patients may receive. Together, these make up the program content.
The first column in Table 2 shows the different kinds of content commonly ascribed to self-management support programs. These content areas reflect the dual purpose of most programs: one, to educate people and thereby increase their knowledge, and two, to coach people to change their behavior.
Educational content (at the top of column 1) primarily consists of information on the disease, its treatment, medications, and self-management. Much of the information provided is disease-specific. The second column shows some of the commonly mentioned prerequisites for providing this content:
- Medical knowledge of the disease, its symptoms, treatment, medications, medication side effects, outcomes, medical terminology, and so forth.
- Knowledge of the self-management tasks needed and their benefits.
- Knowledge of the applicable clinical practice guidelines.
- Knowledge of resources that are useful and available.
- Ability and resources to communicate such information so that people will understand it.
Content areas frequently described as needed in order to
support and coach people's behavior change are listed under "supportive
interventions" in column 1. Much of the specific content of these supportive
activities is patient-specific and relies on the results of the assessments.
Thorough assessment of multiple factors (i.e., the patient's perceptions,
knowledge, motivations, confidence, skills, needs, and goals) is needed to
support many of the subsequent tasks. While many of the prerequisites for the
educational content are disease-specific, the prerequisites for the supportive
interventions tend to be described as a core set of skills applicable across
diseases. A common terminology for describing these skills is lacking, but they
generally are described as psychosocial skills, including the ability to
motivate, persuade, emotionally support, reinforce, build confidence,
problem-solve, and work collaboratively. Programs frequently use
self-management support protocols, software and information system support, and
staff training to promote these skills and tasks.
Programs appear to vary in the relative emphasis they put on
these different content areas. Some programs are primarily educational, and
information is the main content of the support. While all programs include some
education, some programs place considerably more emphasis on supportive
interventions directed towards behavior change. Even within these programs,
there is variation in the types of supportive interventions. The most notable
variation with respect to self-management support content has to do with
emphasis on collaborative decisionmaking. Some program interviewees stressed
the centrality of collaborative decisionmaking, while others never mentioned
it. Where collaborative decisionmaking is key, the program (often through the
care management software) is specifically designed to involve the patient in
selecting and prioritizing the problems to work on, as well as the intensity
and sequencing of the activities. The problem most pressing to the patient,
rather than the clinical priority, is addressed. While traditional education
alone may emphasize the provider's agenda, patient compliance, and provider
decisionmaking, supportive interventions—particularly those involving
collaborative goal setting and shared decisionmaking—move health care
interactions to a focus on the patient's agenda, the patient's self-efficacy
and confidence in his or her ability to change, and collaborative
decisionmaking between patients and providers.41
Patient Population Served
Who is to receive the self-management support? Most of the
primary care model programs target everyone with a specific diagnosis or
diagnoses. Some may offer more support to those who are more ill, but
predictive modeling is not common. One primary care program, however, is
developing a stratification approach, based on patient-reported data, which
divides patients with chronic disease into three categories and distributes
resources differently to each category. The strata are defined by patients'
financial status, confidence in self-care, and presence of bothersome pain and
Within the external models, there is variation in
determining who is eligible for self-management support. Most interviewees
asserted that their programs were designed to target a subset of a population
with a particular diagnosis, but the definition of the subset appeared to
differ. A number of interviewees said that their programs focused on those with
the highest severity of illness. Still others described their target population
in different terms, such as those at highest risk, with greatest potential cost
savings, "likely to have the greatest benefit," "whom they can help," "most
impactable and engageable," or most receptive to change. Most programs use
proprietary algorithms to identify patients with a chronic condition from
claims data and employ commercial predictive modeling software to triage
patients for services. (Some programs even develop and maintain their own
predictive modeling software.) The specific combination of methodology for
identifying and triaging patients, however, is considered the "secret sauce"
and is said to vary from one program to the next. The proportion of the
population that is included in the targeted subset varies too. One informant
said that the number of patients selected for personal contact—"how far down
the list they go"—depends on the specifications of each contract.
Self-management support programming is customized to the
categories identified through predictive modeling. The external programs differ
in whether they limit their self-management support services to the subset or
provide something to everyone in the identified population but reserve more
intensive self-management support for those in the top subset. Programs may
offer written materials, Web site access, or possibly one phone contact to
those below the threshold. For those above the threshold, the intensity of the
outreach, engagement contacts, and coaching contacts may vary with the severity
of illness. As an example, an external call-center program for heart failure
patient support stratified participants (people identified with heart failure who
agreed to enroll) into three categories of high, medium, and low risk. The
protocols specified that individuals at high risk were to receive 16 calls per
year; patients at medium risk were to receive seven calls, and patients at low
risk were to receive two calls.43
Patient engagement in the program is generally considered to
be a major challenge. External programs usually use phone calls and mailings to
get people to participate in the program. Programs differ in the perseverance
that is demanded of the outreach staff, most notably in the number of contact
attempts. They likewise differ in the speed of engagement. While some programs
require participants to "opt-in," others use a more passive "opt-out" approach.
Programs also differ in approach. At least one self-management support
provider, for example, begins using motivational interviewing techniques during
the initial contact to encourage program participation.
Incentives are considered useful for encouraging program
participation and increasing self-management effort and activities. Small
incentives—such as water bottles, totes, and baby shoes—were mentioned. One
informant expressed the opinion that substantial dollar amounts would be needed
to have a substantial impact. Employers have begun to offer reductions in
health insurance contributions to employees who participate in such programs.
Distinct from the self-management support programs, some employers are offering
financial incentives to employees to encourage better medication compliance
(e.g., instituting changes in formularies to ensure that critical chronic care
drugs are on the least expensive tier and eliminating co-pays for generic drugs).
Information databases for self-management support population
identification and decision support vary considerably and may be nonexistent in
primary care model programs. Registries are a common approach to developing a
database and vary from paper-and-pencil versions to sophisticated electronic
registries. When registries or electronic databases are missing, the reach of
the program may be limited to those seeking care.
In all models, data commonly are collected by interaction
with patients (e.g., signs and symptoms of the disease). External model
programs, on the other hand, characteristically rely on large electronic
databases to identify the target population. Most, if not all, use claims data,
which are convenient but frequently limited by inconsistencies in reliability
and validity and time lags in reporting. Some access pharmacy records, lab
reports, hospital admissions records, health risk assessments, and/or other
data as well. These same data may be used for decision support.
As with identification of the eligible population, the data
available affect the type and amount of decision support available to the
self-management support providers for their interactions with patients. Our
interviewees suggested that there is great variation in decision support
provided within the external models. While not all programs have computerized
decision support, a number of our interviewees stressed the critical importance
of utilizing timely patient information in self-management support contacts.
Timely access to patient information is one of the factors that distinguish
self-management support from traditional didactic education. The kind of
patient information used varies and includes:
- Visit, testing, and prescription utilization data that allow reminders and followup of the patient's management of health care processes.
- Clinical data, such as lab results, that are used to guide contact frequency and coaching content.
- Patient assessment data that guide collaborative decisionmaking and problem-solving, motivational interviewing, and other self-management support content.
In some programs, the care managers input patient assessment data into care management software. This, in turn, helps to define and/or prioritize the patient's self-management problems, contributes to the design of a care plan, assists in implementing self-management support activities, and helps to guides reassessment.
Some care managers have access to data from remote monitoring devices, and some have data from electronic medical records. One informant noted that the program shared these care management data with the patient's primary care physician.
What are the guidelines for self-management support
programs? When asked about protocols, many interviewees referred to clinical
practice guidelines, which they see as underlying their self-management support
programs. Self-management support programs vary in the degree to which they
build on clinical practice guidelines, and for the most part, the clinical
guidelines call for self-management support activities such as patient
education, but do not fully prescribe how these self-management support
activities should be conducted. As an example, the following box presents the
sections of the American Diabetes Association (ADA) guidelines that pertain to
self-management support. National guideline development efforts have yet to
focus on detailed self-management support guidelines.
Self-Management Support Provisions of the American Diabetes Association (ADA) Guidelines
ADA guidelines for diabetes care state that any diabetes management plan:
... should recognize diabetes self-management education (DSME)
as an integral component of care... A variety of strategies and techniques should
be used to provide adequate education and development of problem-solving skills
in the various aspects of diabetes management. Implementation of the management
plan requires that each aspect is understood and agreed on by the patient and
the care providers and that the goals and treatment plan are reasonable.44
The ADA's specific recommendation for DSME follows:
- People with diabetes should receive DSME according to national standards when their diabetes is diagnosed and as needed thereafter.
- DSME should be provided by health care providers who are qualified to provide the DSME based on their professional training and continuing education.
- DSME should address psychosocial issues, since emotional well-being is strongly associated with positive diabetes outcomes.
- DSME should be
reimbursed by third-party payers.44
The national standards are structural criteria:
ADA-recognized DSME programs have staff that includes at
least a registered nurse and a registered dietitian; these staff must be
certified diabetes educators or have recent experience in diabetes education
and management. The curriculum of ADA-recognized DSME programs must cover all
areas of diabetes management, with the assessed needs of the individual
determining which areas are addressed. All ADA-recognized DSME programs utilize
a process of continuous quality improvement to evaluate the effectiveness of
the DSME provided and to identify opportunities for improvement.44
Self-management support protocols vary by contract, but many
contract negotiators know little about protocols. Purchasers may leave a number
of the protocol specifications up to the vendor (or the protocol decisions
essentially may follow from the choice of vendor), but a number of vendors also
made reference to specifications included in a Request for Proposal (RFP).
Guidelines for how to provide self-management support appear
in training materials, care management software, other decision support tools
(e.g., scripts), and documentation formats for assessments, contact logs, goal
summaries, action plans, treatment plans, and so forth. Possibly because they
are somewhat "buried" in the software and materials, protocol variations may be
difficult for prospective purchasers to discern. They also may be considered
proprietary information. Protocol specifications may vary with the goals of the
program and the contract under which the program is provided. For example, how
many outbound calls does an employer want to pay a vendor/health plan to provide?
Programs particularly vary in the frequency and intensity of
contact, the degree of scripting they provide for support staff, and the
content of the communicated support. Frequency and intensity of contact are
affected by the goal of the program (e.g., wellness, risk prevention, or
disease management) and the contract/business arrangements of the program
including the intended reach of the program. The interviews and literature
review suggest that most programs have at least one initial outbound call.
Subsequent calls are largely determined by the program contract and the alerts
raised by monitoring of patient data, often assisted by decision support tools.
Patients at higher risk and those with more severe/complex diseases generally get more contacts.
Interviewees rarely spoke in detail about the specific
content of sequential sessions. Some literature was more explicit. A 7-week,
small-group, self-management support program for patients with one or more
chronic diseases, for example, is guided by a detailed manual and covers the
following topics: overview of self-management and chronic health conditions,
creation of an action plan, relaxation/cognitive symptom management,
feedback/problem solving, anger/fear/frustration, fitness/exercise, fatigue
management, healthy eating, advance directives, communication, medications,
making treatment decisions, depression, informing the health care team, and
working with health care professionals.45-46
In addition to assessment forms and questionnaires, many
programs provide scripts to their self-management support staff. Although some
programs provide explicit scripts to be used during phone calls with patients,
the majority of programs have scripts that include typical dialogue for a given
interaction (e.g., high-risk patient, or early vs. late-stage interaction), and
support staff are encouraged to "use their own words" and personalize the
conversation to the patient. In general, there appear to be differences in the
degree of prescriptiveness of program protocols. While some emphasize that
protocols are useful for monitoring self-management support staff performance
and ensuring uniformity in program implementation, concern was also expressed
that prescriptive protocols may reduce flexibility in a service that needs tailoring and personalization.
Although a number of the primary care model pioneers
received training through the Institute for
Healthcare Improvement or government-sponsored quality improvement
collaboratives, non-collaborative training opportunities are not numerous, and
much of the training is on-the-job. Training is available for facilitators of
some structured workshops, such as the Chronic Disease Self-Management Program
and Tomando Control de su Salud.47 One informant stated that a good self-management support training school with a good curriculum and trained instructors is sorely needed.
While some experts voiced the opinion that external model
staff training is critical because much of the self-management support content
and skills are not taught in nursing school (or other professional schools),
there was uncertainty about the length and format of training needed. The
content appears to parallel the staffing qualifications emphasized: care
management skills, motivational interviewing, cognitive skill-building, disease
knowledge and clinical updates (including common comorbidities), medications,
self-management skills, program protocols and standards, care management
software, and computer skills. Additional content items mentioned included
exercise, nutrition, sensitivity to patient issues, skills with lower literacy
patients, and behavioral health information. Subcontracting out for training
was infrequently mentioned. Descriptions of internal training varied
considerably. One informant said that self-management support provider training
came under the responsibility of the nursing director for ensuring nurse
education. Two interviewees said their programs provided a 6-week training
program plus subsequent mentoring. Others mentioned ongoing presentations,
monthly meetings, onsite mentors, call monitoring, shadowing, and feedback of
nurse-specific outcomes data. One informant claimed that there are lots of care
manager training programs on the Internet, but their content and quality vary.
Communication with Patients
Program components in the primary care model may include
various combinations of communication (face-to-face education, phone followup,
Web site access, group visits or sessions, and referrals to classes and/or
community resources). Patients may receive action plans, visit reports, and/or
tools such as calendars or diaries that combine recording opportunities for
self-management monitoring (e.g., recording of daily weights) with information
to support decisions on when to take specific actions.
Many external model programs offer Web site access and written
education materials in addition to telephone contact and face-to-face contact
(in the case of the external on-the-ground programs). Some also use other modes
of communication, such as E-mail and telephone hotlines. Group visits, classes,
and home visits are used less frequently.
Communication Between Physicians and Self-Management Support Staff
Given its location within the primary care setting, the
primary care model usually involves communication between the self-management
support staff and the primary care physician. The primary care physician often
plays a collaborative role in the self-management support (through use of
action plans, for example, or reinforcement of goals and efforts to change
behavior). The self-management support providers and primary care physicians
may share treatment plans, as well as action plans. The nature and degree of
their interaction may vary from a team structure with extensive collaboration
to exchange of information through charting or electronic records.
External model programs differ considerably in their
approach to communicating with the primary care physicians. Some programs
foster little or no communication between the self-management support staff and
the patient's primary care physician, while others strive for a collaborative
relationship. One of the arguments voiced by representatives of programs that
minimized communications with primary care physicians is that in order to
foster independence, the patient, not the self-management support program, should
communicate with the primary care physician. If the patient is having
difficulty communicating with the primary care physician, the appropriate role
for the self-management support provider, according to this argument, is to
coach the patient and help him or her build the skills needed for good
communication. A different reason for minimizing communication with the primary
care physician rests with the claim that physicians do not want such
communication; they already are bombarded with paper and telephone calls; since
they only have a few minutes with each patient, they do not want to use part of
that time to talk about the self-management support program. On the other hand,
proponents of communication with the primary care physician argue that
physician participation is critical; patients trust their physicians, and
physician reinforcement of self-management support leads to better outcomes.
The increasing prevalence of pay-for-performance programs
that reward physicians for compliance with guidelines creates an incentive for
primary care physicians to collaborate with external self-management providers,
as those providers may be able to identify patients that require certain tests or drugs.
In those programs that encourage communication with the
primary care physician, the form of the communication may differ. Not all
programs notify the primary care physician when patients enter the
self-management support program. Some program protocols call for sending
information to the primary care physician in the form of assessment summaries,
relevant clinical practice guidelines, identified risk factors, gaps in care,
acute symptoms, or self-management issues being addressed. Communication may be
by mail, fax, telephone messages, or E-mail. Some externally run programs
provide self-management support in primary care settings. Other communication
strategies mentioned include:
- Provide the primary care physician with access to patient data. (One program is putting its system on the Internet so the provider has access to data gathered by the program.)
- Send reminders and alerts about possible treatment gaps.
- Support the primary care physician's treatment plan.
- Give decision-support software to community providers.
- Request patient data from physicians.
- Put administrative personnel in physician offices to check clinic schedules, print patient data, and put data in charts.
As part of the self-management support provided, some
programs prepare the patient for their visit with the primary care physician.
One program encourages patients to prepare to ask three questions at every
primary care physician visit and works with them to prioritize their questions
beforehand. Another program will occasionally conduct three-way calls (with
patient and primary care physician) to facilitate the patient's communication.
Others simply review issues with the patient before a primary care physician
visit. In one program, the nurse may accompany the patient into the exam room
to help with the patient-primary care physician communication.
In programs with physician communication, self-management
support staff members typically build relationships with non-physician
personnel in primary care physician offices. While two-way communication may be
a goal for some programs, most of the communication at this point is one-way;
self-management support providers generally receive little information or
response from the primary care physicians. Some programs are considering
pay-for-performance or "pay-for-participation" incentives to get physicians to collaborate
with self-management support providers.
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