OLLI — the Osher Lifelong Learning Institute — is an integral part of FSU's commitment to people in all stages of life and learning.By Neil Charness, Ph.D.Director, the Institute for Successful LongevityWilliam G. Chase Professor of Psychology
Florida State University was recently awarded the designation of being
an Age-Friendly University. The age-friendly university initiative is an
international effort, started in Ireland by Dublin City University and fits nicely with initiatives such as WHO’s age-friendly city and community effort, being
spearheaded locally by Sheila Salyer and the Senior Center here in
Tallahassee. These initiatives represent grassroots efforts to address the challenges
of an aging society.
The Age-friendly University initiative aims to highlight the role
higher education plays in responding to the challenges and opportunities
associated with an aging population. It has 10 principles for distinguishing
and evaluating age-friendly programs and policies as well as defining
opportunities for growth:
§ To encourage the participation of older adults
in all the core activities of the university, including educational and
§ To promote personal and career development in
the second half of life and to support those who wish to pursue second careers.
§ To recognize the range of educational needs of
older adults (from those who were early school-leavers through to those who
wish to pursue master’s or Ph.D. qualifications).
§ To promote intergenerational learning to
facilitate the reciprocal sharing of expertise between learners of all ages.
§ To widen access to online educational
opportunities for older adults to ensure a diversity of routes to
§ To ensure that the university’s research
agenda is informed by the needs of an aging society and to promote public
discourse on how higher education can better respond to the varied interests
and needs of older adults.
§ To increase the understanding of students of
the longevity dividend and the increasing complexity and richness that aging
brings to our society.
§ To enhance access for older adults to the
university’s range of health and wellness programs and its arts and cultural
§ To engage actively with the university’s own
§ To ensure regular dialogue with organizations
representing the interests of the aging population.
When I first heard of this
opportunity a few years ago, I realized that FSU met many of the principles
already. We have an active non-credit educational program through the Osher
Lifelong Learning Institute (OLLI), and FSU, of course, offers credit courses to
students, including non-traditional (older) students. The College of Social Work houses our certificate
program in gerontology, open to both undergraduate and graduate
students. FSU’s Career Center provides superb service to students and alumni, and we also specialize
in providing education and career guidance to veterans through the Student Veterans Center.
We have an active
Association of Retired Faculty (ARF). Our Institute for Successful Longevity already
works with seniors throughout the region to include them in research through
registry. FSU is famous for its arts and
cultural programs and provides many free (e.g., student recital) events to the
It was easy to work with
other Center Directors here (e.g., Anne Barrett, Director of the Pepper Institute on Aging and Public Policy, Larry Polivka, Director of the Pepper Center) to structure an application, confer with senior
administrators at FSU, and get the go ahead to apply. Even though we have succeeded in achieving this
designation, there are plenty of opportunities to broaden and deepen our
ISL aims to improve the
chances for successful longevity by all those who are benefiting from the longevity
dividend, the nearly 30-year increase in
life expectancy at birth that our nation has enjoyed between the 20th
and 21st centuries. FSU as an
age-friendly university can play a leading role in this effort.
Department of Psychology
We all often blank on
an acquaintance’s name or forget a phone number that we’ve just checked. When we’re young, we don’t pay much attention
to these memory failures, but as we grow older, we become concerned more about
what they mean. According to a new
national survey (West Health Institute/NORC Survey on Aging on America: http://www.westhealth.org/press-release/worries-about-aging-loom-large-for-americans-over-30-survey-finds/), memory loss is
one of the leading concern for 60+ Americans. Older adults often not only
perceive memory failures but also frequently complain about the perceived
memory failures. In fact, increase in memory complaints in older adults
can be seen as a “normal” part of aging, which is associated with age-related
memory decline. But memory complaints might be a possible indicator of
more serious cognitive and functional deterioration, including dementia and
Alzheimer’s disease. Aging researchers have thus been interested in studying
memory complaints in older adults.
Memory complaints and depressive symptoms
However, early research has shown that
subjective memory complaints in older adults are just partly based on actual
memory performance. In fact,
research has shown that subjective memory complaints are associated with some
other factors, such as depressive symptom and personality traits (e.g.
neuroticism and conscientiousness) reflecting In fact,
research has shown that subjective memory complaints are associated with some
other factors, such as depressive symptom and personality traits (e.g.
neuroticism and conscientiousness) reflecting negative affectivity. Particularly, the link between subjective
memory complaints and depressive symptoms in older adults has intrigued aging
researchers for decades. In general,
individuals with more depressive symptoms complaints more about their memory. Recent
studies also support the notion that changes in memory complaints over time may
be affected by depressive symptoms rather than monitoring of actual age-related
This is not surprising because depressive
symptoms would lead individuals to interpret a common, everyday memory problem,
such as a forgetting incident, more seriously because depressive affect would
increase concern for the negative information (i.e. memory problem). Older adults with depressive symptoms might also
be more susceptible to everyday memory problems, perceiving them as an
indicator of more serious age-related cognitive decline .
The type of memory complaints, depressive symptoms, and cognitive
of previous studies have mainly relied on very brief and global assessments of
subjective memory measured by participants’ responses on a limited number of
items (e.g. “Over the past month, have you had difficulty with your
memory?”). This measure may not be
sensitive enough to detect subtle changes in memory and would simply reflect
older adults’ general beliefs about their memory rather than actual changes in
the limitation, some aging researchers have attempted to assess the
relationship between subjective memory complaints and depressive symptoms using
a more extensive subjective memory complaint scale, namely, the Memory
Functioning Questionnaire (MFQ) .
measures four different types of memory complaints: 1) Frequency of Forgetting
(FF; How often do you forget names, faces, appointments, etc.?), 2) Seriousness
of Forgetting (SF; When you actually forget those items, how serious of a
problem do you consider the memory failure to be?), 3) Retrospective
Functioning (RF; How is your memory compared to the way it was 1 year ago, 5
years ago, and so on?), and 4) Mnemonic Usage (MU; How often do you use
techniques – e.g. keep an appointment book, make lists of things to do, etc. – to
remind yourself about things?).
shows that the
associations between memory complaints and depressive symptoms can vary with
the specific type of memory complaints measured by the MFQ . In particular, among the four different types
of memory complaints, reporting more frequent forgetting (FF) is most strongly
associated with depressive symptoms. Reporting a greater decline in memory
function (RF) is also linked to depressive symptoms. However, seriousness of
forgetting (SF) and mnemonic usage (MU) are not associated with depressive
a pattern of relationships between cognitive factors and memory complaints also
varies with the type of MFQ measure. In the same study , older adults with
higher cognitive functioning reported less frequent forgetting incidents (FF),
although they tended to report a worse decline in memory (RF) and a more use of
mnemonics (MU). The results indicates that older adults with
better cognitive functioning might be more likely to notice declines in memory
functioning and undertake compensating activities (e.g. use of mnemonics) to
cope with the perceived memory problems.
What those findings mean and how we use them
people perceive their own memory functioning can have important implications
for assessing cognitive and clinical aspects in later life. Previous studies have
demonstrated that the investigation of specific patterns between
the type of memory complaints and depressive symptoms might allow us to
differentiate individuals experiencing mild memory deficit from those with
depressive symptoms. It means that investigators and clinicians should
carefully examine if and how the associations between memory complaints,
depressive symptoms, and cognitive factors vary with the specific type of
memory complaints. More specifically, it appears that clinicians
need to screen for depression when older clients present with complaints about
It is important to investigate where memory
complaints come from, how older adults deal with this perceived memory decline,
and how these are tied in with the individual’s well-being.
Future studies could benefit from exploring activated neural pathways
underlying the association between depressive symptoms, cognition, and memory
complaints as well as the effect of aging on them.
 Hülür, G., Hertzog,
C., Pearman, A., Ram, N., & Gerstorf, D. (2014). Longitudinal associations
of subjective memory with memory performance and depressive symptoms:
Between-person and within-person perspectives. Psychology and Aging, 29, 814-827.
A., Hertzog, C., & Gerstorf, D. (2014). Little evidence for links between
memory complaints and memory performance in very old age: Longitudinal analyses
from the Berlin Aging Study. Psychology
and Aging, 29, 828-842.
 Gilewski, M. J., Zelinski, E. M., & Schaie, K. W. (1990). The
Memory Functioning Questionnaire for assessment of memory complaints in
adulthood and old age. Psychology and
Aging, 5, 482–490.
J-., Charness, N., Boot, W. R., Czaja, S. J., & Rogers, W. A. (in press). Depressive
Symptoms as a Predictor of Memory Complaints in the PRISM Sample. The
Journals of Gerontology, Series B: Psychological Sciences and Social Sciences.
By Neil Charness, Ph.D.
A silk worker in the 1940s works from home in Patterson, New Jersey, as he's no longer part of the factory work force; life for older workers has changed since then, but challenges remain in the 21st century economy.
Director, Institute for Successful Longevity
There is an interesting development in terms of
older adult participation in the paid labor force — people are working longer,
reversing a decades-long trend toward earlier retirement.
The huge Baby Boom cohort has expressed interest
in working past “normal” retirement periods of age 62, with partial pension,
and age 65 for full pension. (Retirement with full Social Security benefits
comes at age 67 for those born after 1960 and between 66 and 67 for Baby Boomers.)
Of course, not long ago people worked their entire
lives, before national governments became rich enough to support the
creation of social safety nets such as Social Security here in the United
States (instituted in 1935). One of the earliest
national plans was established in 1889 in Prussia/Germany by Otto von Bismarck,
then chancellor, with entitlement set at age 70 (not the mythical 65 most
people have heard of, though the government eventually set the earliest
pensionable age to 65 in 1916, years after Bismarck’s death). There were private
pension plans long before public ones, with the first in the United
States apparently being that by the American Express Company in 1875. By 1929,
nearly 400 retirement plans were in operation.
This work-longer trend is occurring at a time of dropping participation rates in the labor force. The participation rate is defined as the
proportion of the civilian noninstitutional population that is in the labor
force. Non-institutional means those people 16 years of age and older
residing in the 50 states and the District of Columbia who are not inmates of
institutions (penal, mental facilities, homes for the aged), and who are not on
active duty in the Armed Forces.
There are a number of reasons that older adults
might be staying longer at work. One factor may be the shift of risk from
companies to individuals for private retirement savings, marked by companies
dropping defined benefit-pension plans, which pay fixed and predictable pensions,
to defined-contribution plans, where the individual is responsible for
investing with uncertainty about the payoff on retirement if investments go
Another is the trend of not having pensions
offered at all in some, usually smaller, companies, especially for low-wage
workers. Another is that the centuries-long increases in life expectancy
(which may now be reversing) is making people
aware of the possibility of outliving their financial resources, so they retire
later as a buffer against that uncertainty.
Certainly there are other cost-shifts that have
occurred, for instance, in paying for health benefits, that make people more
uncertain about whether they have saved enough for increasing health care costs
while retired. (No Virginia, there is no Uncle Sam or Santa Claus to pay
skilled nursing home care should you be incapacitated at the end
of life, until you exhaust
all your financial resources.) Those are the
negatives that may be driving later retirements.
There are also positives. People in white-collar
work environments may want to remain, perhaps at less intensity (part-time) to
maintain social networks at work, as well as for the extra income. They may
find considerable satisfaction in their work too, as does this blogger. Those
trends may not occur in many physically demanding blue-collar work
environments: think coal mining, where most everyone retires as early as possible
(age 62 in the United States).
So, our work force is going to be increasingly
older. So, an interesting question is: how are we preparing to support an
aging work force? There are some predictable age-related trends that show little sign
of changing, such as decreasing perceptual, cognitive, and psychomotor
abilities with increased age. Countering negative trends in many
abilities as people age is the increase in knowledge that people continue to
acquire until quite late in life.
Obsolescence is probably more of a threat to older worker productivity
than loss in abilities. Given the need
to maintain productivity (which has slowed in recent years), we now need to
contemplate how to keep all age groups up to date and well-equipped to enhance
work force productivity.
There are still biases against training and promoting older workers,
though the literature suggests that an economic case can be made for training older workers.
Training and retraining methods best-suited for older workers are not yet clear
cut, at least on the research evidence front, though there are some useful
resources that provide guidelines.
So, we have some interesting challenges, particularly
the desire of Baby Boom workers to stay employed longer, yet we need to allow
for those in physically demanding settings or those in poor health to retire
earlier and with true social security.
Can we take advantage of the knowledge that older workers have acquired
over their increasingly lengthy careers (perhaps through mentor roles)? How can
we best compensate for any ability losses (through work-place redesign) and for
obsolescence (with new training)? Now is the time for all of us to get to
work on this issue.
Neil Charness, Ph.D., is the William
G. Chase Professor of Psychology at Florida State University and director of
the Institute for Successful Longevity.
By Jasminka Z. Ilich-Ernst
Nutrition, Food and Exercise Sciences
The triad of bone, muscle
and fat tissue deregulation
Recently, a new syndrome was identified and termed osteosarcopenic
obesity (OSO), signifying the impairment of bone, muscle and adipose
tissues as an ultimate consequence of aging. OSO may also develop due to the initiating
presence of overweight/obesity perpetuated by low-grade chronic inflammation,
as well as to inadequate diet and lifestyle.
Additionally, some chronic
conditions, like cancers, diabetes and other diseases that cause endocrine
imbalance and stem cell lineage disruption may also cause OSO. Although the
tight connection between bone and muscle has been recognized and addressed in
recent years, the inclusion of fat tissue, either as an overt obesity, or as an
age-induced redistribution of fat, or as an infiltrated fat into bone and
muscle, is just beginning to gain more attention within the context of bone and
muscle impairments. We realize now that obesity (once
thought to be protective of bone and muscle), is increasingly linked to
deterioration of these tissues, especially with aging. Therefore, other new terms; osteopenic
obesity and sarcopenic obesity, resulting
from increased overall body fat and/or fat infiltration into bone and muscle, leading
to lower bone and muscle mass, quality, and possibly increased frailty, need to be taken into
consideration as well.
Currently, there are no estimates about
the number/percentage of older adults suffering from the combined condition of
OSO and some preliminary criteria to diagnose it are just being developed. However,
at least 54 million Americans currently have osteopenia and/or osteoporosis and
one in two American women will experience a bone fracture. Additionally, about
5-13% of adults >65 years old and ~50% of adults >80 years old have
sarcopenia. Ironically, hip or any other osteoporotic fracture accelerates the
onset of sarcopenia in older adults; and sarcopenia, which impairs overall
physical function, increases the risk of falls and fractures. One of the most
common health problems in the osteosarcopenic obese population is increased
risk of falls and fractures. Fall-related injuries are one of the major causes
of mortality and morbidity among the elderly. These injuries could have a
significant impact on health-related costs and quality of life. In 2014, one
third of fall- related deaths were attributable to osteoporosis and/or
economic impact of third component of OSO (overweight/obesity) is especially
manifested in healthcare costs and long-term loss of productivity. The annual
medical costs for an obese individual are on average $1,429 higher than that of
a normal-weight healthy individual. The recent rise in the prevalence of
obesity is associated with comorbidities such as type II diabetes mellitus,
hypertension, hyperlipidemia, coronary heart disease, stroke, asthma,
obstructive sleep apnea, osteoarthritis, renal failure, cancer and others.
Aside from all of these complications, obesity has been associated with a 6 to
20-year loss in life expectancy.
chronic disease, drug therapy, genetic predisposition and environmental factors
are the main determinants in the etiology of OSO, lifestyle factors such as
dietary patterns and physical activity are important as well. The latter two
play a substantial role in metabolic homeostasis, determining to what extent an
individual is able to preserve bone mass, muscle mass, and overall function,
while still preserving an optimal body weight or reducing obesity with age.
Nutrition: Although American
adults consume more food and total energy than people of many other cultures
worldwide, evidence points to increased malnutrition risk with age and a link
between the so called “Western-type Diet” and development of chronic disease,
including bone, muscle and fat tissue disorders. Older adults in the United
States are potentially at nutritional risk due to three main factors: increased
consumption of high-energy and low-nutrient-density types of food; inadequate
dietary fiber consumption; and decreased ability to absorb or utilize some essential
nutrients with age. The Western Diet being heavily based on processed food,
provides increased energy but decreased amount of many essential nutrients, and
promotes deregulation of major systems in the body. A typically low dietary
fiber intake in older adults is associated with insulin resistance and
increased inflammation, especially in the obese. Western diet is also
characterized by the high ratio of omega-6 to omega-3 polyunsaturated fatty
acids (the latter being eicosapentaenoic acid (EPA) and docosahexaenoic acid
(DHA)), which contributes to low-grade chronic inflammation and
other unfavorable physiological outcomes. Besides the relatively unwholesome
diet, older adults often consume less nutrients secondary to decreased
appetite, side effects from medications, dementia or a desire for weight loss. Particularly
affected nutrients are protein, calcium, magnesium and vitamin D, all needed to
maintain and build bone and muscle. Additionally, dietary absorption of most of
vitamins and minerals is also decreased, making it harder for the body to
utilize them from the food consumed.
The combination of low protein, high simple
carbohydrates, deficiencies of calcium, magnesium and potassium and excess of phosphorus,
sodium and iron may be associated with lower bone mass, sarcopenia and obesity,
and therefore OSO syndrome. Overall the nutrient composition of the Western
Diet, distribution and amounts, for both macro and micro nutrients may not
promote healthy aging and may be contributing to the development of OSO
Physical activity: In
general, physical activity is needed for maintenance and improvement of all
components of body composition, as well as the physiological and mental health
in people of all ages. Specifically for the OSO syndrome, physical activity,
even in the form of low intensity or habitual activity, is needed to maintain
or improve bone health, muscle strength and quality, improve balance, and
reduce adiposity and inflammation, with aging. A comprehensive exercise program
for older adults includes aerobic, strength, flexibility, and balance training
and could reduce risk for falls, increase functional ability, and improve
quality of life. However, recent findings show that although resistance training
may increase lean (muscle) mass and weight bearing exercise may result in a
reduction of the rate of bone loss (rather than in a significant increase in
bone mass), the best exercise is what an older person is able to do. Aside from
some medium to high-impact activities, habitual and low-impact physical
activity including heavy housework,
gardening, do-it-yourself activities, recreational activities and walking have
been shown to be beneficial for bone, muscle and overall endurance.
Other alternative exercises such as Tai
Chi, Yoga, and Pilates, could be used to support body composition and prevent
bone loss and, as it has been shown, these exercises are associated with increased
quality of life of older individuals. Overall, older adults may require special
considerations such as tailoring progression of exercise intensity and
beginning at a lower intensity. However, any type of immobilization, even
during illness, should be avoided as much as possible in order for the proper
maintenance of bone, muscle and fat tissues.
and overall recommendations
OSO syndrome is
a multifactorial condition of age-related changes in body composition including
bone loss and muscle loss combined with increased adiposity. This complex
condition of aging may be aggravated by poor nutrition, lack of physical
activity and chronic disease. Treatment for OSO syndrome or its management may
require the combination of healthy/optimal nutrition and different modes of
physical activity. For the best prevention, efforts should be made to achieve
peak bone mass before the age of 30, to gain/maintain muscle mass for all age
groups and maintain healthy weight. As discussed above, nutritional interventions
include: consumption of foods with high and good quality protein (eggs, fish,
meat, dairy) adequate energy intake (to maintain healthy weight), adequate calcium,
magnesium and vitamin D intake (dairy foods), consumption of food rich in EPA
and DHA (omega-3 polyunsaturated fatty acids; as found in flaxseed oil, fish oil,
walnuts, soybeans). Moreover, physical activity including strength
training and aerobic exercise supports the maintenance of bone and skeletal
muscle mass and thus attenuates osteopenia/osteoporosis as well as sarcopenia
and may maintain weight. However, habitual daily activity as well as some alternative
types of exercise (Yoga, Pilates) may be more acceptable in older individuals
and thus better suited for the prevention and management of OSO syndrome.
Zhe He, Ph.D.
Assistant Professor, School of Information
Florida State University
email@example.com / ischool.cci.fsu.edu
Clinical trials are conducted for testing the
efficacy and safety of a treatment (e.g., medication, device, procedure) for
one or more medical conditions. However, older adults are systematically underrepresented
in clinical trials, and this creates serious repercussions in the
For example, as early as 1999, a study of
Southwest Oncology Group reported that although about 60% of new cases of
cancer occur among older adults, they comprise only 25% of participants in
cancer clinical trials .
Besides cancer studies, older
adults are also systematically underrepresented in clinical studies on other chronic
conditions such as cardiovascular diseases, diabetes, and dementia. In 2004, Schoenmaker and Van Gool reported a wide
age gap between the patients enrolled in dementia clinical studies and the
patients with dementia in the general patient population . The dementia patients who are
included in clinical research are systematically younger than patients from the
Due to lack of population representativeness,
many trials failed to balance the internal validity and the external validity. In the context of clinical research,
Internal validity refers to whether the design and execution of the clinical trial
leads to valid conclusions about the efficacy and the safety of the treatment.
For example, say you were interested in whether a new drug
was effective for headache relief. If you don’t include a control condition,
such as a placebo pill, along with the experimental treatment condition, you
won’t be able to conclude that the drug is effective. You may be observing a
placebo effect, where any treatment would work (e.g., to cure a headache) as
long as the patient believed the treatment would relieve pain. So, typically, a
trial involves random assignment to a placebo intervention and a treatment intervention
as well as trying to keep the patients blind to the intervention that they are
in (hence the placebo pill) as well as having the evaluators of the outcome
blind to the intervention when they make measurements on the patients (such as
for blood glucose levels, HbA1c, in a diabetes trial). If the internal controls
are not adequate, then the conclusions about the efficacy of the treatment may
not be valid.
External validity refers to the generalizability of the
trial. Even when internal validity is strong, if the trial involves just one
age group, say college students, would make it difficult to conclude that the
treatment effect (assuming it was significant) will generalize to the whole
population (e.g., children, seniors).
Often, internal validity and external validity are in
conflict as tight internal controls, the inclusion and exclusion criteria for enrolling
into a study, systematically bias in the types of sample recruited, making it
more difficult to ensure generalizability.
You need internal validity to draw valid conclusions about
efficacy. You need external validity to
draw valid conclusions about the range of people for whom the treatment can be
expected to have efficacy.
For example, studies are usually designed to minimize
confounding factors and adverse events by excluding patients with
co-medications/polypharmacy, multiple comorbidities, and cognitive impairment, which disproportionately exclude older adults. The
participants in a trial had fewer comorbid conditions and lower overall
mortality than the general patient population . Stringent
eligibility criteria may explicitly or implicitly limit the inclusion of
elderly patients with typical age-related organ impairment and comorbid
conditions that may not interact with the treatment under study. Moreover,
there is a lack of evidence for assessing quality of care for elderly patients
with multiple comorbidities as clinical practice guidelines commonly only focus
on a single disease. To provide the evidence for assessing the efficacy and
safety of a medication that will be used in elders with multiple comorbidities,
these patients should be appropriately represented in clinical trials.
are the consequences?
are the consequences of ignoring or excluding older adults in clinical trials? First, older adults who cannot afford the treatment may not
have a chance to try the free treatment that may save their lives. More
importantly, older adults often have more chronic conditions and take more
medications than younger people. When they take the drug that was primarily
tested on younger people, they may not find it as effective as stated. Even
worse, they have a higher likelihood to encounter serious adverse drug
reactions such as toxicity, organ damage, or even death due to complex
From 1969 when the drug event reporting system of FDA was
initiated till 2002, about
2.3 million case reports of adverse events for the cumulative number of
approximately 6,000 marketed drugs were entered in the database . Out of these 2.3
million cases reports, 1.8 millions reports originated from the United States.
Among the reports who specified age, 35% referred to those 60 years or older. More than 75 drugs/drug products have been removed
from the market due to safety problems. Since 2006, the
number of reports gradually increases each year and has exceeded 1 million in
2013 (See the figure below). This phenomenon naturally makes us to rethink
about the clinical research enterprise. How can we identify most safety issues
during pre-marketing clinical trials instead of asking the entire real-world
patients to “test” the drugs?
Number of adverse
event reports received (solid bars) and entered (checked bars) into Adverse
Events Reporting System since 2006 through the first quarter of 2015. (Form http://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/Surveillance/AdverseDrugEffects/ucm070434.htm)
How to improve the
representation of older adults in clinical trials?
information about clinical trials
is the official clinical study and results registry created and maintained by
the U.S. National Library of Medicine. Mandated by Section 801 of the Food and
Drug Administration Amendments Act (FDAAA 801), all the US-based clinical trials
of drugs, devices, and biological products other than Phase I trials have to be
registered in ClinicalTrials.gov. As of October 6, there were 227,255 studies
with sites in 191 countries registered. On September 16, FDA released the final
rule for clinical trial registration and results information submission in
ClinicalTrials.gov. National Institutes of Health Director Dr. Francis Collins co-authored a viewpoint in the Journal of the American Medical Association about recent NIH efforts
on clinical trial reform which aim to enhance
the award processes, increase NIH’s ability to better assess applications,
improve oversight, and increase sharing of results . Dr. Collins and other senior leaders said: “Investigators and sponsors who fail to
comply with the regulation may be subject to civil monetary penalties assessed
by FDA. In addition, NIH will withhold clinical trial funding to grantee
institutions if the agency is unable to verify adequate registration and
results reporting from all trials funded at that institution. The availability
of results will promote innovations in clinical trial design and avoid
duplication of unsuccessful strategies, thereby avoiding unnecessary risks to
transparency of clinical trials, clinical investigators should be able to
broaden their search for trial participants. Meanwhile, it should be easier for
patients to find clinical trials to get screening.
eligibility criteria in clinical trials
Clinical trial designers should evaluate the
population representativeness of eligible patients during the design phase of a
new trial. Normally, one could manually identify a set of representative
exclusion criteria in a trial and analyze the percentage of real-world patients
that would not fulfill each of these criteria. The vast amount of electronic
data also presents unprecedented opportunity for improving trial design with
big data technologies. A
visual analysis tool of quantitative eligibility features named VITTA (http://is.gd/VITTA),
which includes processed studies summaries in ClinicalTrials.gov, allows one to flexibly select trials
in the same disease domain and then visualize their study populations with a
quantitative eligibility feature . For example, VITTA can visualize overly included or
systematically excluded value ranges of HbA1c of type 2 diabetes trials. Milians and her colleagues used semantic web technologies
to structure eligibility criteria to enhance their reuse and relaxation .
The underrepresentation of older adults in
clinical trials reduces their generalizability and the cost-effectiveness
ratio. Concerted efforts should be made to attract
older adults who are safe to be enrolled in the trials on medical conditions
often seen in older adults. Clinical trials with optimized balance between internal
validity and external validity will give their findings more credibility.
 Hutchins LF, Unger JM, Crowley JJ, Coltman CA, Jr., Albain KS.
Underrepresentation of patients 65 years of age or older in cancer-treatment trials.
N Engl J Med. 1999;341(27):2061-7. PMID: 10615079
 Schoenmaker N, Van Gool WA. The age gap
between patients in clinical studies and in the general population: a pitfall
for dementia research. Lancet Neurol. 2004;3(10):627-30. PMID: 15380160
 van de Water W, Kiderlen M, Bastiaannet E,
Siesling S, Westendorp RG, van de Velde CJ, et al. External validity of a trial
comprised of elderly patients with hormone receptor-positive breast cancer. J
Natl Cancer Inst. 2014;106(4):dju05. PMID: 24647464
 Wysowski DK, Swartz L. Adverse drug event
surveillance and drug withdrawals in the United States, 1969-2002: the
importance of reporting suspected reactions. Arch Intern Med.
2005;165(12):1363-9. PMID: 15983284
 Hudson KL, Lauer MS, Collins FS. Toward a New
Era of Trust and Transparency in Clinical Trials. JAMA. 2016;316(13):1353-4
 He Z, Carini S, Sim I, Weng C. Visual
aggregate analysis of eligibility features of clinical trials. J Biomed Inform.
 Milian K, Hoekstra R, Bucur A, Ten Teije A,
van Harmelen F, Paulissen J. Enhancing reuse of structured eligibility criteria
and supporting their relaxation. J Biomed Inform. 2015;56:205-19
Can telehealth contribute to successful longevity?
By Neil Charness
Director, Institute for Successful
August 8, 2016
When the Soviet Union launched the Sputnik satellite on
October 4, 1957, it did more than trigger the Space Race — it also laid the
foundation for today’s telehealth, the remote provision of health care and
education via communications technology.
As the Space Race rushed forward, from simple radio
communications to putting animals and then humans in orbit, scientists and
engineers in the USSR and in America wrestled with the need to monitor vital
signs of the cosmonauts and astronauts. They took advantage of cutting-edge
electronics to transmit heart rates, blood pressure measurements and other data
from spacecraft to Earth. This same concept — aided by many evolutions in
technology — is at work today as telehealth communications.
Here on the ground, telehealth services were later rolled
out (on dog sleds) to people living in Alaska in the last century as a way to
provide health care outside the main cities.
Originally remote monitoring drew on television technology and bulky
camera systems to beam images of patients and their health conditions
(including data from devices such as electronic stethoscopes) from remote
clinics to physicians who could diagnose and treat the problem.
Today telehealth involves much more compact devices,
including smartphones, but still the most popular format is videoconferencing
between a patient and a health care provider.
Services that required a visit to a clinic or an office (or a hospital)
can be delivered to the home (or a remote clinic), enabling health care
professionals to “see” patients more efficiently and hopefully, more cost effectively.
on cost effectiveness is still open, particularly after a very large clinical
trial in the United Kingdom (the Whole Systems Demonstrator project) failed to find cost effectiveness
compared to usual care, though it was “usual care” pitted against usual care
important advances in communication bandwidth, imaging, and even telerobotics,
remote provision of care can now include remote operations where a surgeon at
one location guides equipment at a different one. (Hopefully the telecommunications link is
sound and doesn’t fail at a critical junction.)
It can also involve having a rehabilitation specialist looking in on a
client to be sure that exercises are being performed the right way. Many forms of telehealth can reduce the costs
of interacting, particularly travel costs for patients and provide health care
resources in a timely way.
So what has
telehealth to do with successful longevity?
the world are living longer than ever before, though there are some worrying indicators that progress may be stalling or even
reversing for some groups here in the United States. Nonetheless, increased age is still strongly
associated with costly to treat chronic conditions such as heart disease, cancer,
respiratory disorders, diabetes, and dementia.
Some estimates suggest that nearly 90% of health care expenditures in the United States are on behalf of those with chronic
conditions. Thus, managing chronic
conditions cost effectively is a major challenge. Management involves monitoring, detecting
negative trends, and intervening before someone reaches a crisis requiring
costly emergency care.
monitoring part is ideally suited to telehealth technology. Rapidly improving sensor technology can be
packaged in wristwatch like devices. It
can be coupled with intelligent software that can detect negative changes and
send alerts via text messages and email to health-care providers. So, it is increasingly feasible to offload
monitoring usually done via regular visits to overburdened physicians to
still plenty of issues to resolve before intelligent agents (think Siri)
replace or even just supplement usual care practices. As one example, how reliable are such systems? Here in Florida, we have regular power
interruptions during summer thunderstorm season, not to mention, occasionally
experiencing more severe weather events such as hurricanes. One hundred percent
reliable electrical transmission systems are not likely to be in place. A recent study my colleagues and I conducted
showed that our telehealth system was pretty reliable, with up time for the
network around 93%. Strikingly, the
human components of the system were less reliable, with patients completing around
80% of measurements that we asked them to take daily (such as weight, blood
pressure, filling out survey items).
Finding ways to minimize (fallible) human effort by substituting more
reliable machine components is going to be a challenge for the field, though
monitoring is always going to be a collaborative enterprise between the human
and the monitoring system.
potential barrier to adoption is knowledge about and attitudes toward
telehealth. Several large surveys
(mainly in Europe and Canada) have shown that only about 10% of people know
what telehealth is, though most saw potential value once it was defined. That finding extends even to clinicians in some countries.
may be a much tougher nut to crack for aging adults as many seniors are
reluctant to embrace new technologies given the greater cost to them of
learning new things compared to younger adults.
Perceived usefulness and perceived ease of use dominate as predictors of
technology adoption and use, as my colleague Wally Boot and I showed in a
recent review chapter.
The cost of new learning contributes negatively to perceived ease of
use. Even health-care professionals such
as nurses have shown some concerns about adopting telehealth in their
practices, as a study we conducted jointly with colleagues in the Netherlands discovered.
assuming other important hurdles such as licensure for practitioners (to
practice across geographic regions rather than solely in the state in which
they are licensed), and payment for telehealth services can be surmounted, it
seems inevitable that health-care delivery will migrate from hospitals and
clinics to the home. That process will
require better design of telehealth systems and better training for users, both
professionals and the people they treat, mainly the growing numbers of seniors
with costly to manage chronic conditions.
Telehealth will increasingly be in the spotlight in our quest to reduce
health care costs and enhance the prospects for successful longevity.
Neil Charness, Ph.D., is the
William G. Chase Professor of Psychology at Florida State University and
director of the Institute for Successful Longevity.
Long Term Care in the U.S.: From Community to Corporate Control
Professor Larry Polivka, Claude Pepper Center, Florida State University
The U.S. Long Term Care System
Long term care for impaired younger and older adults has been a major part of the nation’s health care system for several decades, but until now it has not received much attention from the media or policymakers. With the projected doubling of the 70+ population over the next thirty years, however, it is being looked at with renewed interest.
The current publicly (mostly Medicaid) supported long term care (LTC) system is a mix of nursing home, assisted living and in-home supportive services. This mix is slowly but steadily shifting in the direction of community-based services. This shift is largely in response to the proven cost effectiveness of community based alternatives to nursing home care and the overwhelming preference of both older and younger impaired persons for them.
Most paid LTC services are funded by the Medicaid program and, to a much lesser extent, Federal Older Americans Act funds. In most states, these federal funds are administered through the non -profit Aging Network (AN), which consists of over 600 Area Agencies on Aging (AAAs), several thousand mostly non-profit service providers, and many advocates for aging services. As documented by AARP in recent reports, state and local Aging Networks have built an extensive infrastructure of community-based services over the last thirty years and administered them in a comparatively efficient, low-cost manner.
The Move to Managed Long Term Care
The relative cost effectiveness of AN has not, however, stopped states from seeking to convert their Medicaid-supported LTC system from non-profit Aging Network administered home and community based systems into managed LTC systems that are largely controlled by for-profit HMO organizations. This transition to HMO-run managed LTC systems is occurring in the absence of much, if any, evidence that these services can be provided as cost effectively by HMOs as they have been for several years through the Aging Network. In fact, four studies conducted in Florida since 2003, have found that the state’s HMO-administered community-based program was consistently less cost effective than the Aging Network run programs.
The move toward HMO-administered managed long term care (MLTC) programs has received a boost from the federal government through the recent Dual Eligible Demonstration Project, implemented in over fifteen states. Most of these projects are administered by HMOs under a merged Medicare/Medicaid capitation rate.
Does the future belong to HMO-administered MLTC? Is the AN on the cusp of becoming a LTC side show over the next decade? Has the MLTC train left the station? In some states the answers would appear to be yes. In these states the HMO infrastructure for MLTC is established and the AN has either become a limited player in community-based LTC or else it was never a major LTC player to begin with. In other states, where the AN is established, well-organized, and relatively sophisticated, the train is unlikely to arrive, or, if it does, it would not mean HMOs would displace and marginalize AN organizations (Oregon, Washington, and a few other states). In the remaining states, mixed models of LTC involving the AN and HMOs, are likely to emerge over the next decade (Massachusetts, Minnesota, and Ohio). These hybrid models might provide opportunities for extensive partnerships between HMOs and AN organizations, but only if the latter continue to receive sufficient support from policymakers.
Preserving the Aging Network Role in Long Term Care
I think it is important for several reasons that the AN role in LTC be preserved and even strengthened in the future. First, the older population is growing rapidly and the need for LTC services is projected to double over the next twenty years, heightening the need for efficient and low-cost administration of services. The AN has a 20-year history of managing LTC services with an administrative overhead of around 5% and minimal increases in reimbursement rates. It is highly doubtful that for-profit HMOs can match this record while meeting shareholder profit expectations. In order to avoid serious threats to the quality of services or access to care, HMO-administered LTC services could well end up costing substantially more than AN-run services, creating fiscal pressures that could lead to unmet needs and declining quality. Policymakers and the elderly could, in short, be caught between the escalating need for services, on the one hand, and cost increases that could seriously jeopardize the states’ capacity to meet a minimally acceptable levels of care, on the other.
A second reason for maintaining the role of the Aging Networks is the Network’s demonstrated ability to strengthen and maintain informal caregiving networks. Long term care’s labor intensive and, at its best, depends on close interaction between formal (paid) and informal (unpaid) care from family, friends, neighbors, and volunteers. The social capital (community trust and support) of non-profit organizations in the AN is essential for building and maintaining the formal-informal caregiving networks and for avoiding a potential crisis in caregiving as described by the President’s Council on Bioethics in 2005:
…The danger is that some old people will be abandoned or impoverished, with no one to care for them, no advocate to stand with them, and inadequate resources to provide for themselves.
An increasing number of baby boomers will lack children or spouses to help provide care, which means that we as a nation are facing a major caregiver challenge. An AN-based LTC system deeply embedded in the community is what we need to meet this challenge. It could become an
essential part of a more comprehensive, community-based model guided by an “ethic of care” rather than the maximization of shareholder value. This kind of community-embedded and oriented care could provide a framework for integrating all domains of care from preventative and acute care services to LTC for the huge number of elderly who will need help over the next several years.
Why Managed Long Term Care Now?
Since the evidence indicates that the non-profit aging network organizations have long been a cost-effective provider of community-based care with the demonstrated capacity to administer an integrated LTC system, why have for-profit HMOs been enlisted to replace them in several states with the support of the Federal Center for Medicare and Medicaid Services (CMS). My co-author, Professor Baozhen Luo, and I are now completing a paper that addresses this question by suggesting that this innovation is a product of the public policy driven by the neoliberal political economy, which has been ascendant in the last several years.
The neoliberal political economy and policy agenda are based on several ideological assumptions about how the economy and government should work, individuals live, and communities function. Neoliberalism assumes the supremacy of the free market in determining the value of goods and services and the superiority of market incentives to maximize profits over collective efforts to achieve the common good. The neoliberal policy agenda prioritizes cuts in spending on public programs and privatizing what remains, cutting and virtually never raising taxes, removing as much public regulation as possible, and maximizing the scope of individual responsibility for every aspect of life from daycare and education to retirement security and long term care. This economic model denies the value of the public sector and its ability to create the conditions (including substantial government subsidies) necessary for economic growth.
What’s At Stake?
Long term care is one of the last remaining domains of the U.S. health care system not dominated by corporate health organizations. This situation, however, is rapidly changing, as HMOs have become convinced that they can profitably administer LTC programs created by the non-profit AN, and as the neoliberal policy agenda has gained traction at the Federal and state levels for over thirty years. I seriously doubt that the neoliberal corporate model will be able to achieve the same efficiencies and quality of care outcomes as has the AN in most states for over twenty-five years. If the AN has been allowed to wither away and the corporate model fails to contain costs or meet quality standards, the critical LTC challenge facing the U.S. will become dire, and, we will have little choice but to either pay the corporate piper anyway or allow the need for LTC services to go unmet.
In most states the AN organizations are essential and widely-supported elements of their local communities. They are well-positioned to serve as hubs for community based, integrated health and LTC systems. The displacement of these aging network by HMOs would, in my judgment, represent a lost opportunity for further developing such systems of community-based and person-centered systems of care. The AN is a civic asset whose benefits radiate throughout their local communities and contribute to the creation of strong communities with a sense of control over their own fates.
Even in those states that move toward comprehensive HMO-administered MLTC systems, AN organizations, including services providers, should be given the chance to evolve in a manner conducive to their survival and even to thrive in modified roles. This eventuality is unlikely, however, in the absence of a serious discussion about LTC policy at the federal and state levels and a renewal of aging advocacy activity.
Reinhard, S. C., et al. 2014, AARP, Raising Expectations, Second Edition.
Polivka, L. & Zayac, H. 2008, The Gerontologist, Forum, Vol. 48, No. 5, 564-572
The Florida Legislature, OPPAGA 2010, Report No. 10-33.
Pay for Performance: Can it Help Improve Nursing Home Care?
William G. Weissert
Jan. 22, 2016
Nursing home quality of care is a chronic problem the country over. Nearly 95 percent of nursing homes flunk one or more quality measures on regulatory surveys. A quarter of homes have problems that threaten patients’ lives. Regulators strive to pull laggards up to the minimal standards required to keep licensure and certifications, but they can go only so far. A small group of facilities is always at the bottom. Nothing seems to move them up.
How about paying for performance? If they improve quality of care, pay them a bonus. ObamaCare (the ACA) now does that for hospitals. They get paid a bonus of 1 or 2 percent of their Medicare bill if they meet hard-to-achieve quality markers for certain conditions. They lose money if they don’t show improvement, readmit too many patients because they failed to fix their problems the first time, or because they fail to control infections in their hospital. Together these bonuses and fines can add up to substantial new revenues, or substantial losses.
But the ACA does not apply to nursing homes. We wanted to know whether or not it should. Could Pay for Performance – P4P – help improve nursing home care. Not replace current regulations. Just complement them with bonuses for improving care.
We reviewed the P4P studies done over a decade in hospitals and nursing homes to see what has been learned about P4P in both nursing homes and hospitals. Over the years 2002 to 2012, 22 studies were found suitable for inclusion in our analysis. Six were randomized controlled trials, 10 were not randomized but had a control group, and six were before and after studies with no comparison group. We calculated “effect sizes” for each study: That is, how big and in what direction was the effect of receiving P4P on the 150 outcomes studied across all the 22 studies?
The range of effects was large. Most positive was a 45 percent increase in foot exams when a facility was paid extra to do them. Tests for kidney disease were positively affected (37 percent increase); 28 percent more patients received perfect asthma care when providers were paid for perfect care; eye exams in diabetic patients went up by more than 25 percent. A dozen and a half other outcomes went up by double digits. Several dozen more went up by single digits and more by less than 1 percent increase.
Unfortunately, nearly another two-dozen outcomes got worse when paid to get better. Most of the negative effects were less than a 1 percent decline. But two were in single digits, and one was a 21 percent decline: the amount of blood being pumped from the heart’s left ventricle. But it was in a rural hospital, and probably reflects an increase in a small number of patients.
Of more concern is the median effect size. That was less than 3 percent. Even if we assume that over time P4P would get providers’ attention and cause them to work harder at improvement, to say the 75th percentile (a very generous assumption), P4P promises to improve care by barely over 4.5 percent.
If P4P were cheap, easy and pretty certain to deliver improvement, even a 3 or 4.5 percent increase might be worth trying for. But alas, P4P is anything but cheap, easy or certain. In point of fact it is likely to be rather expensive for at least two reasons: The cost of bonuses; and The cost of monitoring to make sure that patients have the condition being paid for at the start of a payment period, and that it’s been fixed when payment is due. With bonuses and potential lawsuits at stake, careful, ideally repeated and validated measurement is necessary. And bonuses have to be large enough to attract providers’ attention.
But these are not the only problems with P4P. Indeed, the list of potential pitfalls with P4P is quite distressing. It typically starts with poor design. For example, what do you pay for? If you pay for things that are easy, you waste money and produce little improvement. If you pay for difficult, complex outcomes, you risk demanding that providers prevent or fix problems that may be the result of nature or other causes beyond the providers’ control. If you pay for only a few things, quality still lags in most areas. If you pay for many, providers may lose focus or get discouraged. And you can only pay for things that can be measured clearly, and for which there are enough cases to do analysis, and there is a reasonable chance of success.
And whom do you pay? If you pay top management, the money may never trickle down to those whose behavior at the bedside has to change. But if you pay aides and nurses, management may not cooperate in supporting extra care needed. And when do you pay? Monthly to keep providers aware of their potential to benefit, or infrequently so that successes and failures even out so you don’t have to take money back that you gave last month when things went well now that we’re in a month when declines are outnumbering improvements.
But these are just design problems. There is still implementation. Here is where things can really go wrong, plagued by such problems as:
“Slippery slope:” Caving in when providers demand that you pay for almost meeting success criteria; paying for processes of care that don’t guarantee better outcomes; paying for good outcomes that don’t really change patient well-being; paying for outcomes that are similar but not as difficult as the ones you wanted to pay for; paying for improved record keeping rather than real change in care practice; and paying windfalls to facilities that were already going to do it, while the ones you really want to improve are still not meeting outcome goals, not getting bonuses but not getting any better.
“Distortion effect:” What you pay for is what you get, but when you don't pay for what you used to get, you may not get it anymore until you add it to the pay list. Care and attention get drawn away to things that earn bonuses.
“Cream skimming:” Facilities quickly figure out that they should admit only patients likely to improve, shun those not likely to improve, and load up on patients with conditions that are lucrative under your P4P system.
Staff may also not know how to fix the problems you are eager to pay for. Training may be inadequate even if knowledge is available. And no one knows whether paying for certain outcomes will cease to be effective over time. Providers may become inured. Finally, will filthy lucre drive out good will? Will those who used to work harder out of a sense of mission and duty now cease to volunteer unless they are paid?
These problems are not made up. They come from experiences of those who’ve done the studies and those who’ve studied them. But there are some positive lessons to take home. Among them are: transparency is important – providers must know what’s being measured and where the baseline from which they’re expected to improve started; providers have to be involved in choosing outcome performance targets and agree that they are achievable; and P4P is more likely to succeed if it’s coupled with other reforms, like web-based quality ratings.
In the paper we’re summarizing here we did report one large and very successful randomized controlled trial of nursing home P4P which was done decades before any of the other less successful studies. Alas it was conducted by the present author and colleagues at what is now called the US Agency for Healthcare Research and Quality. It resulted in: (1) admission of more complex cases to the treatment group nursing homes (cases they normally shun); (2) longer life expectancy; (3) increased discharges; (4) reduced hospitalizations; and (4) and higher patient satisfaction. So it can be done. The problem is that it’s easy to go wrong, hard to get P4P right, it’s likely to have only small effect sizes, it’s expensive, and no one knows whether short term P4P improvements will last over the decades that we want nursing homes to deliver good quality.
On the other hand, it’s an approach that can be broadly applied to many nursing homes, which most reforms can’t. Those few celebrated nursing home success stories tend to focus on star performers, which is not helping the average Medicaid patient. And Congress really likes P4P and is likely to demand broader application of it. We’d be best served by trying to improve our design and implementation efforts rather than giving up on it even though, frankly, it’s not clear that the juice is worth the squeeze.
Dr. Weissert is director of the FSU Public Health degree program, professor of political science at FSU, and professor emeritus of public health at the University of Michigan.
 Weissert, William G. and Lucy Faye Frederick. 2013. Pay for Performance: Can It Help Improve Nursing Home Quality? Public Administration Review 73:S1, (S140–S151) October.
Nursing Home Culture Change: Legal Apprehensions and Opportunities
Marshall B. Kapp, J.D., M.P.H
Director, Florida State University Center for Innovative Collaboration in Medicine and Law
Despite significant improvements over the past quarter century, problems persist in nursing home quality of care and quality of life in nursing homes. They persist despite an atmosphere of extensive regulation and litigation. The Culture Change Movement is an attempt to improve quality of life by making nursing homes less institutional and more homelike. The movement officially originated in 1997, has been spearheaded by the Pioneer Network, and is currently embodied in such projects as the Eden Alternative, Wellspring Program, Green House Project, and Advancing Excellence in America’s Nursing Homes campaign.
One example of a Culture Change initiative was the August 2011 publication of “New Dining Practice Standards” written by the Pioneer Network and the Food and Dining Clinical Standards Task Force, with its emphasis on individualized diets. Building on that effort and broadening it, the Rothschild Person-Centered Care Planning Task Force published “A Process for Care Planning for Resident Choice” in February 2015.
An area of interest for me is the extent to which legal apprehensions held by nursing home providers serve as an impediment to changes in facility practices that could promote Culture Change. Many providers are concerned that resident choices regarding their daily lives may be inconsistent with professional custom and/or recommendations, and therefore respecting those choices may expose the provider to adverse legal consequences in the event of bad health outcomes. Providers also are concerned that current regulations, by focusing sharply on medical outcomes, may be inconsistent with a forceful enhancement of quality of life for residents. Because health care providers on the whole generally have low to no tolerance when they perceive their own legal risks, it is important to study the extent (if any) that perceived defensive, risk management-oriented behavior drives out positive, resident autonomy-enhancing opportunities.
What might be done to ameliorate some of the provider anxiety about regulatory repercussions that effectively stand in the way of more vigorous commitment to Culture Change? For one thing, we must emphasize the consistency between person-centered care and resident rights regulations. Additionally, we should amend applicable regulations and subregulations (such as Guidances, Opinions, and Advisory Letters), for example, incorporating by reference New Dining Practice Standards into the Centers for Medicare/Medicaid Services (CMS) Long-Term Care Interpretive Guidelines for surveyors. We need to closely examine proposed federal Medicare/Medicaid Conditions of Participation now under consideration for their compatibility or incompatibility with the Culture Change philosophy and practice. We should endeavor to make the Medicare/Medicaid Survey & Certification process more transparent and consistent, less punitive (“Gotcha”), and more collaborative with good facilities honestly working to improve resident quality of life. Providers need to engage in proactive communication and collaboration with resident advocacy groups and ombudsmen.
Valuable strides have been made in making nursing homes better places to live, but much more remains to be accomplished. Research and education regarding the interplay of law and practice will be an essential part of this effort.
Information needs of an aging population
Michelle M. Kazmer, Ph.D.
School of Information
Florida State University
firstname.lastname@example.org / ischool.cci.fsu.edu
Information scientists are a scholarly community who believe that it is vital to do empirical research to identify the information behaviors (a broad concept that encompasses many behaviors of people vis-à-vis information) of groups of users, and the environments (contexts, social worlds, etc.) in which they engage with information. Information behavior research within the field of information science centers the user and his/her needs, with the goal that information sources and services will be designed and delivered to meet those needs.
A review of the research about information needs of older adults indicates that substantial literature, including empirical research and expert opinions, focuses on “the information that experts believe older adults should have, and how the experts believe it should be delivered to them.” On one hand, this is entirely appropriate, because there are inherent flaws in allowing users of any age to completely define their own information use environments: people have pre-conceived notions about what is true or false, and they have preferred sources of information that may not be of high quality when measured objectively. There is a lot of vital information that would foster health, financial stability, and social connectedness, but people – and in particular older adults – are often unaware it exists or do not have means to access it.
On the other hand, when subject experts such as physicians, financial planners, and social media managers exclusively determine the information needs and design of information materials and services for older adults without systematically collecting and analyzing input from users, the results are often disappointing. Information is delivered in the wrong medium, and at the wrong time and place. Information users careen from information poverty to information overload and back again, overwhelmed by content with little context or process to help them figure out how to use it. Information technology environments are deeply over- or underestimated. The ability to use, store, and retrieve materials in a personal collection may be misgauged.
Through our research, intentionally focusing on the information needs and information use environments of older adults, our group of information science researchers have identified key factors to consider as inputs to designing information sources and services for older adults.
- Breadth of needs
- Technology and technology training
- Religion and spirituality
- Interaction and inclusions
Breadth of information needs
Health-related information is important to many people including older adults, and is the focus of a lot of existing research, but it is not the only type of information needed by older adults. It is important to understand empirically the full spectrum of their information needs. Genealogy, travel, cooking, finances, and lifelong learning opportunities are examples that have emerged, but ongoing research within specific service populations is needed. Considerations of age (the spectrum of “older”), language of origin, culture, ethnicity, education level, and personal interests is vital. Our tendency to group people obscures the fact that people are always members of more than one “group”; any tendency to consider “older adults” as a group with homogeneous information needs, for whom a similar set of information sources and services will work well, is doomed to fail.
Information technology and training
Among older adults, access issues that may affect people of any age in the community are sometimes, but not always, compounded by unfamiliarity and reluctance to engage with new technologies. The question of “why” emerges as a strong finding: older adults are more likely to ask “why” we need to apply information technology to an information source or service when it never required one before (why a website instead of a pamphlet? why a patient portal rather than making a phone call?). Many older adults are eager to seek information and try technology in a supportive environment. It is vital to explore the true range from technophobe to technophile, from reluctant to eager user when technology is available, and to consider how to assess and ameliorate practical naiveté among many older adults about phishing, malware, and other social engineering. Age is not as important a factor for learning and successfully using information technology as is one's level of interest, engagement, and personality. Among older adults, those who are able to make it a priority to engage actively with technology generally succeed in using newer technology to fulfill their information needs.
The need to use great teaching techniques applies just as much to older adults as it does to young students when we design and implement information services and technology training. Using strong visuals, verbal explanations, demonstrations, and hands-on learning in the same learning session is optimal. Where feasible, adopt learners’ terms and language in teaching. For example, if you use the term “USB drive” and your learners use the term “thumb drive,” switch to that term where possible. All learners get overwhelmed from time to time; using language that they are already familiar with helps them to concentrate on learning new concepts.
Religion and spirituality
In some aging populations, religion and spiritual practices are intrinsically intertwined with information behaviors. From the church community as an information world, to the role of divine messages as an authoritative information source, it is important to consider how (or whether) we wish to, or are able to (or not), meet our older adults’ information needs in ways that are aligned with their religious and spiritual preferences. Either way, it is important to evaluate the extent to which we need to consider older adults’ religious beliefs and practices in understanding their approach to information, and the constraints and opportunities of these information settings.
Interaction and inclusion
While many older adults do feel comfortable communicating via social media, email, and text messaging, in-person and telephone are preferred for information seeking and sharing. Interpersonal information seeking among peers and family is common, but not in place of seeking information from experts; rather, interpersonal information seeking is used to identify useful experts (nurses, librarians, clergy) who are considered truly helpful.
When we consider in-person information interactions, we need to consider accessible and inclusive physical spaces. Meeting ADA standards in our physical information spaces, such as libraries, senior centers, and information commons in retirement communities, is necessary but not always sufficient. Continuing to focus on signs, seating, lighting, and other aspects of the physical environment and materials is important to successful information use. Partnerships that allow information to be where the users are – rather than requiring users to come to where the information is – are especially important for older adults.
Finally, part of being inclusive in considering the information behaviors of older adults is considering older adults as sources of information in addition to considering them as information users. As noted above, reviewing the literature shows a largely one-directional flow of information from “experts” to older adults, not taking into consideration the fact that they can be effective leaders who bring expertise to projects such as creating community histories, teaching technology classes, facilitating events, and guiding makerspaces. Our shared goal is an integrated, inclusive, multi-faceted and multi-directional approach to information behavior (information needs, seeking, use, etc.) and creation of information sources and services.