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Objectives New to Healthy People 2020
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HC/HIT HP2020–6:
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(Developmental) Increase the proportion of persons who report that their health care providers always involved them in decisions about their health care as much as they wanted.
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Status: New to Healthy People 2020.
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View Objective Comments
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Objective Clarification:
Topic Area: Health Communication and Health IT
HC/HIT HP2020–6:
(Developmental) Increase the proportion of persons who report that their health care providers always involved them in decisions about their health care as much as they wanted.
Objective Clarification: This should be expanded to include caregivers along with the actual individuals: in text, that might read something like “Increase the proportion of persons and/or their caregivers who report . . .”
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Objective Clarification, Objective Text:
Reposting as account was inadvertently logged out:
This is an important objective; I agree that it needs to be re-worded. I stongly support that the individual who is directly receiving care needs to be involved (to the extent that they desire) in medical decision-making. However, it cannot be overlooked that for both the elderly and individuals with disabilites of any age, families are an important component of the health care delivery system. To varying levels they often observe, manage, and support the health care needs of their loved ones in the community. The best health care would be achieved via family-centered models of care that include participation by these support persons in decision making when the individual receiving care does not object. It can be difficult, no doubt, to treat a family, but the individual does not live in isolation and is often reliant on family members, sometimes to a great extent, to manage their healthcare needs. Many family members report difficulties engaging with providers, especially since HIPAA legislation; I do not believe HIPAA was intended to undermine communication, including participation in decision-making, by family caregivers when an individual either requires and/or desires support and does not object.
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Objective Clarification, Objective Text:
This is an important objective; I agree that it needs to be re-worded. I stongly support that the individual who is directly receiving care needs to be involved (to the extent that they desire) in medical decision-making. However, it cannot be overlooked that for both the elderly and individuals with disabilites of any age, families are an important component of the health care delivery system. To varying levels they often observe, manage, and support the health care needs of their loved ones in the community. The best health care would be achieved via family-centered models of care that include participation by these support persons in decision making when the individual receiving care does not object. It can be difficult, no doubt, to treat a family, but the individual does not live in isolation and is often reliant on family members, sometimes to a great extent, to manage their healthcare needs. Many family members report difficulties engaging with providers, especially since HIPAA legislation; I do not believe HIPAA was intended to undermine communication, including participation in decision-making, by family caregivers when an individual either requires and/or desires support and does not object.
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Objective Clarification, Objective Text:
The language should reflect a partnership in which the communication flows from both provider and patient. The American College of Obstetricians and Gynecologists agrees with the previous comment suggesting a change in language to “report satisfaction with their involvement in medical decision-making decisions.”
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Objective Clarification, Objective Text:
The National Council on Disability (NCD) noted in its “The Current State of Health Care for People with Disabilities” report (2009) that people with disabilities in general are significantly less likely than people without disabilities to be satisfied with the quality of health care they receive.
One study of Medicaid beneficiaries concluded that women with disabilities were about 50 percent less likely than women who did not have disabilities to be satisfied with their medical care. Amongst numerous barriers cited, another study that focused on breast cancer screening noted that attitudinal barriers adversely affected the health care services received by women with physical disabilities. In this study, women with disabilities reported that their health care providers held them in lower regard and were more likely to disregard or overlook symptoms when treating women without disabilities. Outcomes from focus groups conducted in Massachusetts include the following anecdote:
In one particularly troubling instance, a provider’s value judgment about a patient with mental retardation led to a year-long delay in treatment for a life-threatening medical condition. The patient suffered from advanced breast cancer that required surgery, but her physician implied that due to her already low quality of life (owing to her disability), she did not merit the intervention, and her guardian did not want to make the decision to go forward without the physician’s support. This woman reportedly died within a year, and there was concern that her death may have been precipitated by the delay in surgery. (Mari-Lynn Drainoni et al., “Cross-Disability Experiences of Barriers of Health-Care Access,” Journal of Disability Policy Studies 17, no. 2 (2006), p. 101 – 105).
People with developmental disabilities also report a lack of participation in their health care decisions. Difficulty communicating with some health care providers because too little time is available during standard office visits for discussion of complex health issues means that people with developmental disabilities are often insufficiently informed about wellness and prevention activities.
On account of the fact that people with disabilities often face a lack of meaningful participation in health care decision making due to the attitudinal barriers displayed by their health care providers, improvements must be made in professional education and training in disability cultural competence. Disability competency is not a core curriculum requirement for accreditation or receipt of federal funding for most medical and dental schools or for hospitals to participate in federally funded medical student internship and residency programs. In addition, applicants who seek either a medical or other professional health care license are generally not required to demonstrate disability competency.
In “The Current State of Health Care for People with Disabilities” (2009), NCD recommends that agencies of the Federal Government, including the institutes and centers of NIH that are involved in providing federal grants and federal loans, including loan forgiveness programs for medical education, should require that medical training institutions, whose students receive support, include in their training curricula material that ensures that graduates will possess disability knowledge, cultural competency, and a basic capacity to work effectively with people with disabilities. Further, NCD recommends that federal agencies concerned with health care quality for people with disabilities–including the Agency for Healthcare Research Quality, the National Institute on Disability and Rehabilitation Research, and the Access Board–should develop a best practices guide to help providers (a) recognize that universal design goes beyond Americans with Disabilities Act requirements, and (b) understand methods of implementing and evaluating universal design principles in health care settings. This guide should also profile organizations that have implemented best practices, including their methods and outcomes.
See: National Council on Disability, “The Current State of Health Care for People with Disabilities” (2009), http://www.ncd.gov/newsroom/publications/2009/HealthCare/HealthCare.html.
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Objective Clarification:
HC/HIT6 needs rephrasing, “always” is unrealistic
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Objective Clarification:
Suggest rewording this objective to: "Increase the proportion of adults (age 18+) who report being satisfied with their level of involvement in their health care-related decisions."
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Objective Clarification:
While it is a vital goal to increase the proportion of persons who report that their health care providers always involved them in decisions about their health care 'as much as they wanted' we must also note that not all patients will wish to engage all the time in shared decision making.
As an example - when I go in for ankle surgeries I am an engaged patient (ePatient) who discusses options with my entire care team.
However, when I am diagnosed with the swine flu, I may just want to be a passive recipient of care - I just want my doctor to 'fix' me.
We must encode in the semantic structure of this objective the underlying point that what matters is the available, ready OPPORTUNITY to engage with my providers in shared decision-making processes on a subjective, at will basis.
We must not penalize patients who do NOT wish to engage but wish to be instead passive recipients of care.
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Objective Clarification, Objective Text:
ASHA supports the addition of this objective. Emphasis should be placed on the appropriate use of interpreters for those who do not speak English, as well as the use of augmentative and alternative communication (AAC) for those who have problems communicating. The use of communication aids will help patients become more engaged in their health care decisions, if they so choose.
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Objective Text:
Comment 3 (12/14/09)'s rewording seems clearer than that of the original.
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Objective Clarification, Objective Text:
This objective, as written, perpetuates the old standard of care. Consider Berwick's definition in Health Affairs 19 May 2009 for what this transaction should be experienced as by 2020:
The experience (to the extent the informed, individual patient desires it) of transparency, individualization,
recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care.
Note especially the issue of transparency and that specific health care contexts are provided (relationships and circumstances, not just physical care). Perhaps it should also include 'patient and their family are involved...' to respect the larger sphere of medical decision-making processes that go on most of the time.
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Objective Text:
I agree with the previous comment. This is a very important addition. Perhaps it could be worded, "Increase the proportion of persons reporting satisfaction with their involvement in medical decision-making discussions."
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Objective Text:
The wording of this objectives may be problematic, specifically the words 'ALWAYS' and the phrase 'AS MUCH AS THEY WANTED.' I suspect it will be very difficult to measure as it is currently written.
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Objective Text, Status:
We strongly support inclusion of this objective.
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