Patient Participation - Science topic

Personally I'm familiar with SDM-Q-9 scale which is pretty compact questionnaire to measure the extent to which patients are involved in decision-making in healthcare. I'll paste a link for you here to the page of the developers of the scale: https://www.patient-als-partner.de/index.php?article_id=20&clang=2

There are however other scales as well.

Although I do not know of a published paper on this subject, I suggest you look at the website of the Dana-Farber Cancer Center in Boston: https://www.dana-farber.org/about/quality-safety/culture

A few decades ago, after a serious patient safety problem emerged, the Dana-Farber decided to build patient and family members into several of its organizational processes.

Thank you for your suggestion, I will try that too:-)

You may have found it already, but there is actually a PAM for mental health (even though the original measure was intended to be generic for use in mental and physical health). Link to the paper is here:

Best wishes,

Beth

Hi James, has a look at these links.

Measuring patient engagement: Development and psychometric p...

,https://www.nursingsimulation.org/article/S1876-1399(19)30026-X/abstract

I think the Medical Education need to go more disciplinary and share more lessons learned. Please refer to our papers on our book

Dear Marie-Madeleine Bernard, I appreciate your contribution, also with respect to mentioning the importance of monitoring side effects. I also agree that political interest has already affect research on COVID-19, some of these forcing premature data presentation/interpretation with strong effects on the final results.

Surely during M.B.B.S course Psychiatry should be equally important as important

as Pharmacology . A Good Doctor specially surgeon should be a better councilling

capability to transfer the pateint to O.T without anxiety .

It might need an endorsement from the author(s). Using international validated tools as the guidelines on http://www.equator-network.org is a good way to create the check-list of the plain-language summaries. Hopefully one day the guidelines incorporate this on their checklist

What are the differences between patient participation and patient engagement?

I follow answers

best regards

A lot depends on how much prior research has been done in your area. If you are looking at a well studied area, such as patient satisfaction or quality of life, then you may well be able to adapt existing questionnaires without patient input. Alternatively, if you are looking something that is condition-specific or that applies to a unique group of patients, then it would be highly advisable to get their input.

I would be interested in learning this as well.

You may find helpful the transtheoretical model approach by the Robert Wood Johnson foundation in the Diabetes Initiative program, in their studies the RWJF was able to design a model to increase patient attendance and medication adherence in their diabetes centers

Karen:

Perhaps, my conference paper on lessons learnt as a Blended Learning Champion for my School of Education may be helpful in answering your question:

many thanks,

Debra

Dear Kate,

Last month we published a paper in PLOSone on determinants of activation for self-management in 4 chronic diseases: COPD, DM-II, HF & Renal disease. The PAM-13 was used as a dependent variable and a large number of patient, disease and context variables as covariates. Although this does not specifically focused at engagement in programs/interventions this might provide some increased understanding on the variance in engagement for SM in general. 

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0126400 

Kind regards

Jaap 

From a legal standpoint this falls under something called 'informed refusal.' A physician makes a clear recommendation to the patient [to take a drug, to have a test, etc]. Should the patient not follow that recommendation it is the physician's duty to make sure the patient knows the risks and consequences of not following that advice. There are as many styles as  physicians as to the emotional attachment a physician puts into encouraging a patient to anything. Above I've described the core [this is what I want you to do and these are the consequences if you don't do it]. As noted above non-compliance to some therapy is almost the rule.

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

In this terms, terminal stages of dementia, for instance, are in similar conditions: "no meaningful life" . Or very severe oligophrenias -with no meaninful interactions, even with his or her parents- Neuroimaging will show in all cases severe structural brain damage but no image will draw the ethic limit or frontier .

If we define euthanasia as "a deliberate intervention undertaken with the express intention of ending a life, to relieve intractable suffering" in EVP, severe mental retarded, etc lack the demonstration of intractable suffering. Family and/or friends suffers and grieves, but the patients , we don´t know.