Science topic

Patient Advocacy - Science topic

Promotion and protection of the rights of patients, frequently through a legal process.
Questions related to Patient Advocacy
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Dear community of researchers,
I am currently working on a small research project that will explore community- and patient-led strategies for increasing referral of diabetes and hypertension and raising awareness of these two diseases in Mozambique, a highly resource-constrained country.
I would like to ask:
- does anyone have knowledge on patient-led referral strategies and advocacy activities? If so, could you please share any relevant links and/or are you aware of any recommendations on this from international health organisations?
- do you believe that involving patients in such activities would be ethically appropriate? Why/ why not?
Thank you in advance for any replies.
Regards,
Chiara
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Thank you very much Jehan for sharing your perspective, that is very helpful.
To be more clear, with "referral" I referred to the identification by T2D patients of individuals with risk factors for T2D, such as being overweight and having excessive thirst or urination, and their referral to healthcare professionals.
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I'm currently conducting research looking at the information needs of hospital patients. My research questions are:
a) what are patients' experiences of receiving information in acute hospital?
b) what are patients' early information needs?
I'm using Braun & Clarke's (2006; 2019) reflexive method of thematic analysis, which states that themes represent "patterns of meaning across a dataset", rather than being organised as answers to specific questions. While I have a number of themes that meet these criteria, I believe it would also be clinically relevant to have sections entitled "most useful sources of information", and "most important information topics". However I'm worried that these may be viewed as "under-developed themes". If anyone has any guidance on this it would be greatly appreciated.
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It feels like you are distinguishing between the interpretive themes you develop and the practical advice that you provide on "most useful sources of information", and "most important information topics". I agree that if you treated those two topics as themes they would indeed be "under developed," but that need not be the case if you first develop a set of interpretive themes, and then use those themes to organize and present the more practical information.
In some ways, this might be a distinction between what goes into your Results section (the themes) and what goes into your Discussion section (the practical implications of those themes).
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I have 2 comparable cases that were treated with 2 different treatments( both approved for the meant indication) but showed different outcomes. and I think it is better if I present them in one paper for the goal of comparison if needed.
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In my opinion; it would be better to present them in one paper.
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Lead is most dangerous to children, especially those under six. According to CDC nearly one half of a million children living in the United States have levels of lead in their blood that exceed ten micrograms of lead per deciliter of blood, a level at which adverse health effects are known to occur. Lead poisoning can affect virtually every body system; it can damage a child’s central nervous system, kidneys, and reproductive system. Why lead is most dangerous to children? and how can we prevent it?
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The growing bodies of children absorb more lead. At high levels of exposure, lead attacks the brain and central nervous system to cause coma, convulsions and even death. Children who survive severe lead poisoning may be left with mental retardation and behavioural disorders.
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Dear Professors & Researchers
Me and my colleagues are looking for questionnaires used to evaluate patients point of view. We have found a few questionnaires on 'Speaking up for Patient Safety by Healthcare Personnel. But we want to evaluate the "Speaking up for patient safety by patients.' We have found a framework about the subject
which could be a framework for the questionnaire, but have not yet found a questionnaire that could be used to evaluate patients' point of view or their 'Speak up about their care.'
It would be kind if you have any information about this matter.
Your prompt reply is very appreciated.
Sincerely Yours,
Majid Rezai-Rad
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The validity link of the questionnaire in Persian is being prepared online. Hopefully, after gathering comments, we will reach a general conclusion with the help of the respected tutor.
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For those working in the medical field or aware of reliable medical YouTube:
What YouTube channels reflect Evidence-based medicine (EBM), what is example of these channels to suggest for patients?
If you can also specify what medical specialty that YouTube channel got and if other languages are available, that would be even better.
Thank you for sharing your insights to support patients and their families!
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The discussion is very nice and my information improve. Thank you my good friends.
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Hi, I am working with a large medical claims file and need to compute a new variable that represents patients with one of over 300 different diagnosis codes. I would normally use the wizard to compute a new variable and enter the individual diagnosis codes that meet the criteria for inclusion. However, with hundreds of codes, it will take a very long time to enter them and there will likely be a lot of typos. Is there an efficient and accurate way to tell SPSS to select cases that have one of over 300 codes without having to type them in in the syntax editor or the wizard? Thank you! Mary
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Thank you, Ernest! This is perfect and time saving.
Best,
Mary
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My study is related to different levels of a hormone (normal, high & low levels) in a cohort of patients. After establishing inclusion criteria and during 4 years, I could collect consecutively about 150 patients. The majority of patients represented the normal level group. The other 2 groups (high & low groups) had limited numbers of patients (12 & 8 patients only). The journal rejected the paper because of these limited numbers. I spent about an additional year trying to find additional suitable patients for the 2 abnormal groups but it was impossible. So, what can I do with submission and publication? I asked the help of some colleagues with the same subspecialty but they are not interested in the study of my topic. Time is going on and I cannot collect more patients with abnormal (high & low) hormone levels. Are there any suggestions, please?
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Thank you very much, Todd and Linda
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Answers will use in the study about CMHC's in Turkey.
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Good morning Dr Chrysikou
I am sure that Buse Acik will benefit from your clarifications on how one obtains architectural plans in the UK for research purposes, as well as from the additional information provided.
For clarity, my response was focused to outline in very brief the process on how one obtain the various permissions to be able to build the facility only.
Regards
Vladimir Ladinski
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In my law practice, I prepare advance directives such as living wills for clients who are suffering from mild dementia. Legally, they are deemed competent to make end-of-life decisions about whether heroic measures should be taken to preserve their lives if they are in a vegetative state. I have also prepared living wills for clients who were in such advanced stages of painful debilitating diseases that they were heavily medicated during the time we discussed the details of their living wills (tube feeding, hydration etc.). Yet, these clients were also deemed legally competent to make decisions about refusing aggressive medical treatment in their final days. Such is not the case with people who have mental health conditions. They may be forced to take antipsychotic drugs despite the fact that these drugs are known to have adverse side effects.
Mental Health America has come out in opposition to treating mental health conditions differently from other disabilities:
“For years, persons with mental health conditions have been combating the centuries-old stereotype that they are not competent enough to make their own decisions, or to be in charge of their own mental health care. Today, we know otherwise, that persons with mental health conditions are not only capable of making their own decisions regarding their care, but that mental health treatment and services can only be effective when the consumer embraces it, not when it is coercive and involuntary. …
“The most common type of involuntary mental health treatment is court-ordered commitment to an inpatient mental health facility. However, involuntary treatment also includes involuntary medication or other treatments including electro-convulsive therapy, whether court-ordered or imposed by mental health professionals…. While MHA recognizes that involuntary treatment may sometimes be necessary, we do not support the use of involuntary outpatient treatment.” http://www.nmha.org/go/position-statements/p-36
What are your views in this subject?
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I might insert consideration of the dialogue between Russell Ackoff and Daniel Greenberg in Greenberg, D., & Ackoff, R. L. (2011). Ethics and morality—A dialogue. Systems Research and Behavioral Science, 28, 3-14. doi: 10.1002/sres.1008 to spice up this cogent argument.
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I am thinking about doing my dissertation on clinical trials participants' understanding of open consent when it comes to genetic samples for futher testing. I would like to know if anyone has expierence in surveying/questionarres to patient groups (as the test sample) and if this is usually effective way of gaining information? are these groups helpful in filling out questionarres? will I be wasting time?
This is my first research project and would appreciate feedback from your experience in the field.
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Hi Lezelle.  I haven't done any work on testing informed consent through surveys.  I have, however, extensive experience as a health advocate looking at informed consent from patients' perspectives.  
I am not sure how you intend to assess understanding.  If you want to assess what people have learnt about certain concepts (e.g. the risk of injury from a procedure, the range of options available to the patient), then some form of questionnaire asking question about the concepts may work quite well. Such an approach assumes you know the 'correct answers.'
If you want to assess the nature of patients' understanding of the issues a questionnaire may not be helpful.  First, it is limited to the questions you think of asking, which may or may not match their experiences.  Second, it assumes language proficiency that may or may not apply.  Third, what people SAY in a survey does not necessarily reflect their concerns or issues. Fourth, there is a lot of self-presentation in questionnaires about deeply personal issues.
I'd suggest using one or more elicitation techniques.  Possibly TAT.  See the attached paper for an example.  Other useful techniques include vignettes
Jenkins, N, Bloor, M, Fischer, JAN, Berney, LEE & Neale, J 2010, 'Putting it in context: the use of vignettes in qualitative interviewing', Qualitative Research, vol. 10, no. 2, pp. 175-98.
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Looking for published research on the motivation behind and the definition of the stages a patient goes through, moving from patient to patient advocate to expert patient advocate.
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Dear  Loes,
Thank you very much for your thorough answer.
I speak French and I know the work of V. Rabeharisoa for some five years now as well as that of S Epstein.
 I have heard recently talking about "patient advocate experts" and asked what is the difference between this and the "expert patient advocates" but the answer was vague and could not make the difference between the two.
While the expert patient advocate by Epstein reflects what patient advocates do today,  a patient advocate expert does not sound proper to me. First I would say it's rather "patient advocacy expert" and not "patient advocate expert", but what does someone understand by it? I would say that it directs to someone who is expert on the practicalities, the management of patient advocacy and who uses this knowledge and skills either for his own advocacy or for others (a patient group or organization). Moreover, it leads to think about a professional who offers services for a fee.
Wondering what you and other researchers active in this field think about this term. Can it be used to differentiate between a patient who is enabled, engaged, empowered,  equipped, (these adjectives refer to definition of the e-patient by Dr Tom Ferguson) and uses the experiential knowledge acquired while caring for his health to advocate for better care for patients, either individually or as a member of a patient organisation, and a  "patient advocate expert' ?
A "patient advocate expert" is presumably a patient, who after becoming expert in his disease and in participation in a patient organization or in individual activism,  is rather a full-time patient advocate, volunteer or professional consultant, who  not only advocates for better care but also consults interested bodies on health care delivery issues, is invited to be member of various health care policy committees, consults on how to deal with patient advocacy groups, is and considers himself a "health professional" in his own right.
Would be interested to hear your views.
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I am interested in policy related research that would help to drive legislation in safe patient handling, or to influence organizations such as Joint Commission, OSHA and CMS.
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The Association of periOperative Registered Nurses (AORN) has a guideline on this. www.aorn.og
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I am looking for some advocacy plans for tobacco (both smokeless and smoke) cessation/ control which still have room to experiment among various consuming populations groups.
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Maybe a good strategy is to  encourage smokers you know  who have developed  lung cancer to sue the tobacco  companies?  Such actions certainly  create awareness about the grubby nature of the industry and the danger  of their products. 
A Florida jury has fined the Reynolds Tobacco Co. US$23.6 for punitive damages in a lawsuit filed by the widow of a smoker who died of lung cancer in 1996.
The case is one of those filed in Florida after the state Supreme Court in 2006 threw out a US$145 billion class action verdict. That ruling also said smokers and their families need only prove addiction and that smoking caused their illnesses or deaths.
In 2013, Florida’s highest court re-approved that decision, which made it easier for sick smokers or their survivors to pursue lawsuits against tobacco companies without having to prove to the court again that Big Tobacco knowingly sold dangerous products and lied about the hazards of cigarette smoking.
As expected the Reynolds senior management grizzled about the verdict.
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I am doing research for class and needed to develop ideas.
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Participatory decision making will in no dought improve the quality of healthcare and reduce defects. Consultations/discussion with peers leads to an appropriate decision taken being taken by a clinician. Discussing with patients as well about their treatment will improve on medication use and avoid any potential defects that may result in the absence of a clinician
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Over the last 20 years or so there's been a remarkable rise in public awareness around autism. Its public image has changed profoundly if only one looks at its portrayal in ‘Rain man’ and the popular American tv-series ‘The Big Bang Theory’ (and others, see http://www.avclub.com/articles/the-changing-face-of-nerds-and-autism-in-popular-c,91151/).
Moreover autistic people and their parents and advocates acquired a voice – at times a hysterical one, particularly in the US – and influence health policies and the research agenda. However, I find very little serious sociological study of these phenomena. Good examples are
Chamak, Brigitte, ‘Autism and social movements: French parents’ associations and international autistic individuals’ organizations’, In: Sociology of Health & Illness 30(2008) 1, 76–96.
Chamak, Brigitte, Beatrice Bonniau, Emmanuel Jaunay & David Cohen, ‘What Can We Learn about Autism from Autistic Persons?’ In: Psychotherapy and Psychosomatics, (2008)77, 271–279.
I’m looking for more, or – if there isn’t much – colleagues interested in pursuing this line of inquiry.
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Thanks Nicholas !!!