Letters of Intent are due Tuesday, February 13, 2018, by 5:00 p.m. ET.
Those selected to submit a full application will be notified by Wednesday, March 14, 2018.
Full applications are due Wednesday, May 16, 2018, by 5:00 p.m. ET.
The Broad PCORI Funding Announcements (PFAs) seek investigator-initiated applications for patient-centered comparative clinical effectiveness research (CER) projects aligned with our priority areas for research. This PFA covers the following four priority areas: Addressing Disparities; Assessment of Prevention, Diagnosis, and Treatment Options; Assessment of Prevention, Diagnosis, and Treatment Options; Communication and Dissemination Research; and Improving Healthcare Systems. We are looking for your best ideas to address needs of patients, caregivers, clinicians, and other healthcare stakeholders in making personalized clinical decisions across a wide range of conditions, populations, and treatments.
These broad areas encompass the patient-centered comparative clinical effectiveness research we support. As our work progresses and we engage with a broad range of patients, caregivers, clinicians, and other healthcare stakeholders, we may develop additional national priorities for research.
The Deborah Munroe Noonan Memorial Research Fund, established in 1947 by Frank M. Noonan in memory of his mother, continues its proud tradition of supporting improvements in the quality of life for children with disabilities with one-year grants up to $80,000 (inclusive of 20% indirect costs). Recognizing that children’s health services and supports are provided in a wide range of community settings as well as hospitals, the Noonan Research program welcomes research proposals from both nonprofit organizations and academic institutions that serve children with physical or developmental disabilities and associated health-related complications. Eligible organizations and target populations must be within the Fund’s geographic area of interest of Greater Boston. Neither a faculty position nor an advanced degree is required.
The Sara Elizabeth O’Brien Trust, Bank of America, N.A., Trustee, will support up to one additional project submitted to the Noonan Research Fund focusing on medical research related to blindness in children and adolescents. Please note, the O’Brien Trust does not fund work on other visual impairments, e.g., strabismus. The O’Brien Trust is not restricted to the Noonan geography specified by the Noonan Research program.
Proposals for basic science research will not be considered (except for proposals focused on blindness funded by the O’Brien Trust), nor will applications for capital costs such as buildings, renovations, or major equipment items. The Noonan Fund does not support direct service, primary prevention projects, or primary medical conditions such as obesity or device development. Drug trials are not supported by the Noonan Research Fund.
INTRODUCTION: Anyone can become disabled in a flash. Furthermore, across the life span, almost all persons live with disability at some time, especially in their later years. Thus, according to the World Health Organization (WHO), disability is “a continuum, relevant to the lives of all people to different degrees and at different times in their lives,” virtually a “universal phenomenon” and a “natural feature of the human condition.” As the Institute of Medicine stated: If one considers people who now have disabilities…, people who are likely to develop disabilities in the future, and people who are or will be affected by the disabilities of family members or others close to them, then disability affects today or will affect tomorrow the lives of most Americans. Clearly, disability is not a minority issue. Disabilities are diverse although they share one common feature: persons with disability perform basic human functions—such as hearing, seeing, speaking, moving, thinking, and emoting— differently than do other persons. Since early times, human societies have struggled with defining disability and determining whether individuals are disabled. Wherever people gathered to share resources, some individuals could not fully perform their expected social roles or equally contribute to communal wealth because of sensory, physical, cognitive, or mental health impairments.
There is a concerted effort underway to evaluate and reform our nation’s approach to the health of people with ongoing or elevated needs for care, particularly persons with chronic conditions and/or disabilities.
This literature review characterizes the current state of knowledge on the measurement of chronic disease and disability in population-based health services research on working age adults (age 18-64).
Scoping review methods were used to scan the health services research literature published since the year 2000, including medline, psycINFO and manual searches. The guiding question was: “How are chronic conditions and disability defined and measured in studies of healthcare access, quality, utilization or cost?”
Fifty-five studies met the stated inclusion criteria. Chronic conditions were variously defined by brief lists of conditions, broader criteria-based lists, two or more (multiple) chronic conditions, or other constructs. Disability was generally assessed through ADLs/IADLs, functional limitations, activity limitations or program eligibility. A smaller subset of studies used information from both domains to identify a study population or to stratify it by subgroup.
There remains a divide in this literature between studies that rely upon diagnostically-oriented measures and studies that instead rely on functional, activity or other constructs of disability to identify the population of interest. This leads to wide ranging differences in population prevalence and outcome estimates. However, there is also a growing effort to develop methods that account for the overlap between chronic disease and disability and to “segment” this heterogeneous population into policy or practice relevant subgroups.
One in five adults in the United States have some type of disability (CDC, 2017).
Adults with disabilities are more likely to be obese, smoke, have high blood pressure, and be physically inactive than adults without disabilities(CDC, 2017).
Increased risk for medical conditions, such as heart disease, stroke, diabetes, and some cancers are also more common among adults with disabilities (CDC, 2017).
Approximately 40 million people in the U.S. identify as having a serious disability, and people with disabilities experience many health disparitiescompared with the general population. The Guide to Community Preventive Services (The Community Guide) identifies evidence-based programs and policies recommended by the Community Preventive Services Task Force (Task Force) to promote health and prevent disease. The Community Guide was assessed to answer the questions: are Community Guide public health intervention recommendations applicable to people with disabilities, and are adaptations required?
An assessment of 91 recommendations from The Community Guide was conducted for 15 health topics by qualitative analysis involving three data approaches: an integrative literature review (years 1980–2011), key informant interviews, and focus group discussion during 2011.
Twenty-six recommended interventions would not need any adaptation to be of benefit to people with disabilities. Forty-one recommended interventions could benefit from adaptations in communication and technology; 33 could benefit from training adaptations; 31 from physical accessibility adaptations; and 16 could benefit from other adaptations, such as written policy changes and creation of peer support networks. Thirty-eight recommended interventions could benefit from one or more adaptations to enhance disability inclusion.
As public health and healthcare systems implement Task Force recommendations, identifying and addressing barriers to full participation for people with disabilities is important so that interventions reach the entire population. With appropriate adaptations, implementation of recommendations from The Community Guide could be successfully expanded to address the needs of people with disabilities.
Access two courses that are approved for continuing education by the Centers for Disease Control and Prevention for physicians, nurses, certified health education specialists and other health professionals.
The Ohio Disability and Health Program has developed online training modules that are designed to increase the capacity of health care providers to provide quality healthcare for persons with disabilities. The two courses are approved for continuing education by the Centers for Disease Control and Prevention for health professionals in multiple areas. For more information, please visit:
NPR Special Series: Abused and Betrayed: People with Intellectual Disabilities and an Epidemic of Sexual Assault https://www.npr.org/series/575502633/abused-and-betrayed
At a moment of reckoning in the United States about sexual harassment and sexual assault, a yearlong NPR investigation finds that there’s little recognition of a group of Americans that is one of the most at risk: adults with intellectual disabilities. The series starts on Monday, January 8 and runs through January 18th.
The Diversity & Inclusion Toolkit is one way AUCD provides resources and strategies to, “champion and model diversity, equity and inclusion.” AUCD is continually searching for resources to make available at the Diversity & Inclusion website. In December, 10 recently added resources are highlighted. The focus of these resources includes health conditions & equity; ethnicities; business and employment; and more.
For people with disabilities, stigma can be a major barrier to participation. Stigmatizing attitudes about disabilities can also affect relationships between patients and providers. However, health care providers can be allies with their patients and help reduce the impact of stigma.
What Is Disability Stigma?
The word stigma comes from the Greek word for “mark.” Generally, stigma is a negative set of beliefs about people with specific characteristics. For example, ethnic or sexual minorities, or people with unusual facial appearance may encounter stigma.
People with disabilities have been stigmatized throughout history. In many cultures, disability has been associated with curses, disease, dependence, and helplessness. Disability stigma can play out in a number of ways, including:
Social Avoidance – People with disabilities may be left out of social activities, or they may find that friends become more distant after they develop a disability. People may be hesitant to make eye contact or start a conversation with someone who has a visible disability.
Stereotyping – People with disabilities may be presumed to be helpless, unable to care for themselves, or unable to make their own decisions. People with one disability, such as a speech impairment, may be presumed to have other disabilities they don’t have, such as an intellectual disability.
Discrimination – People with disabilities may be denied jobs, housing, or other opportunities due to false assumptions or stereotypes about disabilities. This still occurs today, despite disability rights laws such as the Americans with Disabilities Act (ADA).
Condescension – People with disabilities may be coddled or over-protected due to perceptions of their helplessness.
Blaming – People may be blamed for their disability, or accused of using their disability to gain unfair benefits.
Internalization – People with disabilities may themselves adopt negative beliefs about their disability and feel ashamed or embarrassed about it.
Hate Crimes and Violence – People with disabilities may be targeted in hate crimes. They are more likely to be victims of physical or sexual violence than people without disabilities.
How Can Disability Stigma Affect Your Relationship with Your Patients?
People with disabilities may manage their condition in ways that guard against being stigmatized. In addition, people with disabilities may be especially sensitive to signs of possible stigmatizing from their providers.
Some issues related to stigma that may arise include:
Concealment – If possible, some people may choose to conceal their disability in public in order to minimize stigma. As a result, they may be reluctant to use assistive devices, such as mobility devices or hearing aids, or to tell others about their diagnosis. They may also forgo some medical services.
Disability Pride – On the other hand, some people express pride and a positive identity around their disability as a way to counteract stigma. These individuals may wish to join groups of people who share their disability, where it is no longer stigmatized. They may also opt against medical treatment intended to “cure” their disability because they have developed a positive identity around the condition.
Social Integration – Stigma is social in nature and may interfere with social integration. In contrast to “concealment,” people may choose to make their disability more evident in order to improve their options for social participation. For example, a person with a mobility impairment may choose to use a wheelchair instead of a walker if the wheelchair would allow him or her to travel to work or family activities without fatigue.
Need for Respect – Your patients may be especially sensitive to your attitude about their disability. Building a collaborative partnership with your patient built on trust and respect communicates your support for the patient as a whole person.
Tips for Respectful, Stigma-free Interactions
Establish Respectful Communication
Dospeak directly to your patient, even if he or she has a companion or interpreter in the room. Make eye contact with the patient, not the companion.
Douse ordinary language. It’s OK to say “see you later” to a patient who is blind, or to talk about going for a walk with a patient who is non-ambulatory. Using ordinary expressions signals that you see your patients as full members of their community.
Doask patients with speech impairments how they prefer to communicate. Some patients may write or type to communicate if they have impaired speech, for example, or they may have established yes/no signals.
Douse age appropriate language and tone with adult patients, and assume that a patient with a disability will understand basic instructions unless you have a clear indication otherwise.
Don’t interrupt or rush a patient who communicates slowly because of a speech impairment.
Don’t guess what a patient is saying. If you don’t understand the communication, ask for clarification.
Respect Patient Privacy and Autonomy
Do provide written materials in an electronic format when possible, for patients with visual impairments and those who have difficulty with handwriting or manipulating print materials. A patient can independently fill out an electronic form in advance of an appointment. Provide medical record information, treatment plans, and instructions in a digital format when requested.
Do ensure that your office building and toilets are accessible to people using mobility aids such as walkers and wheelchairs, so that they can navigate the space independently.
Do ensure that your office practice is accessible. For example, your patients with disabilities should be able to get weighed, use the exam tables, and access radiological exams.
Do ask a patient the best way to provide physical assistance if it is needed.
Don’ttouch, pull or grab a patient’s body without asking for consent. For patients with some physical conditions, inappropriate touch can cause pain or interfere with balance. For others, unwanted touch can cause anxiety. Asking for consent respects the patient’s bodily autonomy.
Don’t handle a patient’s mobility device without consent.
Respect Disability Identity and Culture
Do respect a patient’s choice to downplay or highlight their disability in particular settings.
Don’t use negative words to describe disabilities. Words such as “tragedy” or “suffering” can convey a stigmatizing view of disability to your patients. Patients are not “confined to wheel chairs,” but rather use wheelchairs.
Don’t fall into the trap of “golden rule thinking.” This is imagining how you would personally feel with a disability as a way to infer how your patients feel. Disability is a complex experience that differs from person to person and changes over time. Listen to your patients to discover how you can be their best ally.
Eddey, G. E. & Robey, K. L. (2005). Considering the culture of disability in cultural competence education. Academic Medicine, 80, 706-712.
Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity. New York: Simon and Schuster.
Morris, M. A., Yorkston, K. & Clayman, M. L. (2014). Improving communication in the primary care setting: Perspectives of patients with speech disabilities. Patient, 7, 397-401.
Olkin, R. (1999). What Psychotherapists Should Know About Disability. New York: Guilford Press.
“Disability Stigma and Your Patients” was developed by Arielle Silverman, PhD, and published by the University of Washington Aging RRTC. Content is based on research evidence and/or professional consensus.
This information is not meant to replace the advice from a medical professional. You should consult your health care provider regarding specific medical concerns or treatment.
University of Washington. (2016). Disability Stigma and Your Patients [Factsheet]. Aging Well with a Physical Disability Factsheet Series. Healthy Aging & Physical Disability RRTC, http://agerrtc.washington.edu