consent and confidentiality

2.Prepare for a professional discussion on consent and confidentiality using the following questions: (AC) 13th December 2018

Q. What is consent, informed consent, and active participation?

 "" CONSENT ""

to give permission or reach agreement on a thing ...
to agree to do something, or to allow someone to do something...

Permission for something to happen or agreement to do something.
https://dictionary.cambridge.org/dictionary/english/consent
https://en.oxforddictionaries.com/definition/consent

 "" INFORMED CONSENT ""
consent to surgery by a patient or to participation in a medical experiment by a subject after achieving an understanding of what is involved ie the person has all the relevant information in terms of what the treatment involves, benefits and risks, if any reasonable alternative treatments, and what will happen if treatment doesn't go ahead

one should also consider "" VOLUNTARY CONSENT "" – in so that a given decision to either consent (or not consent) to treatment must be made by the person themselves, and must not be influenced by pressure from medical staff, friends or family

and the capacity of the patient (mentioned later)

https://www.merriam-webster.com/dictionary/informed%20consent
https://www.nhs.uk/conditions/consent-to-treatment/
https://en.wikipedia.org/wiki/Informed_consent



 "" ACTIVE PARTICIPATION ""
an approach that enables individuals to be included in their care and have a greater say in how they live their life in ways that matter to them.

The benefits of active participation can be divided into primary benefits and secondary benefits.

Primary benefits include:

Physical benefits including greater activity levels.
Increased independence and autonomy in what people do.
An opportunity for individuals in health and social care settings to have a say in matters of direct concern to their lives.
Increased opportunities for social contact and interpersonal relationships.
Encouraging involvement and self-awareness.  Individuals become more involved in the community and more aware of opportunities and what they can hope for themselves.
Increased opportunities for learning and development of important skills, knowledge, education and employment.
Enhanced well-being, with increases in self-confidence, self-esteem and self-belief.
The benefits of active participation include the above primary benefits where the individual gains from its application in the real world of health and social care practice, but there are also some secondary benefits.

The secondary benefits can be described as benefits that occur as a result of active participation, but are not a direct aim of active participation.  These include:

Decreasing the likelihood of abuse. As the individual engages positively by actively participating is area of their life, such as in personal care, the scope for abuse by others is reduced.
Decreasing vulnerability. As individuals gain in their self-confidence and self-esteem they are less prone to exploitation and harm from others


https://freedomtoteach.collins.co.uk/health-and-social-care-benefits-of-active-participation/



Q. Why might a patient decline consent?

multi-factoral but commonly the patient may not believes the risk involved are worth the treatment. on a weekly basis i go through with patients as part of the pre-cataract assessment clinic explaining the risks of surgery (3/1000 end up with vision worse than what they start with & in rare cases 1/10000 people loose the eye sight) whilst these arent large numbers & i express the inverse in a hundred cases 95 people have no problem at all.

either that or on review of the subject matter they believe there are more reasonable alternative treatments available (though in the confines of DRS / optometry the list of choices is respectively finite

others have argued that a patient doesn't understand the subject matter. one site ( https://www.kevinmd.com/blog/2017/07/decline-fall-informed-consent.html ) cited that two common consent forms vary 33-35 pages in length - last time i read a document of that length was applying for a mortgage / buying a house


If the patient decides against the therapy, authorisation and hence consent is withheld. There is a
tendency in the medical literature to refer to this rejection as refusal.

Despite being utilised as synonyms there are distinctions between
their meanings. Refuse is the stronger of the two and often stresses
firmness, at times rudeness; to refuse to obey an order, to refuse to lend
somebody money. Decline on the other hand, means to reject politely or
courteously and is applicable to social events or an offer to help; to
decline a dinner invitation.

The doctor-patient relationship is usually propitious and courteous.
If one acknowledges this and the distinction between refuse and decline,
one realises that patients seldom refuse treatment. If indeed on
occasions patients do refuse in the sense that they have to be rude to
express themselves as unwilling to accept something, then have we not
erred in our consent taking process? Our tendency to use the term
refusal, when a patient politely and courteously rejects our offer of
treatment may more be an indication of our feelings rather than a
reflection of the patient`s sentiment.


https://www.bmj.com/rapid-response/2011/10/28/refuse-or-decline

https://www.kevinmd.com/blog/2017/07/decline-fall-informed-consent.html



Q. What are the potential impacts of screening on the patient/their families?

multi-layered but citing pros / cons of "screening"

Screening is a way of identifying apparently healthy people who may have an increased risk of a particular condition. The NHS offers a range of screening tests (eleven have been approved for national implementation) to different sections of the population.

The benefits of having a screening test include:
Screening can detect a problem early, ie before you have any symptoms.
Finding out about a problem early can mean that treatment is more effective.
Finding out you have a health problem (or increased risk of a said health problem) can help people make better informed decisions about their health.
Screening can reduce the risk of developing a condition or its associated complications.
Screening can save lives.

The limitations of screening can include:
Screening tests are not 100% accurate (i refer to sensitivity & specificity). You could be told you are at risk of problem when you don't (referred to as "false positive") and may lead to some people having unnecessary further tests or treatment as a result of screening. A screening test could also miss a problem (referred to as "false negative") and could lead to people ignoring potential symptoms in the future as they had a negative screening result.
Because screening is not 100% sensitive or specific which can lead to anxiety over a given disease / condition, it is important that individuals have access to up-to-date and accurate information in a format they can understand in order to reach a decision as to whether or not to accept the offer of screening.
Some screening tests can lead to difficult decisions. For example, if a pregnancy screening test tells you your baby has a higher risk of a particular condition, you may then be faced with a decision about having further diagnostic tests that involve a risk to your pregnancy. If the diagnostic test is positive, you may then need to decide whether to continue with your pregnancy.
Finding out you may have a health problem can cause considerable anxiety = emotional worry of health checks / finance (how will X cope with Y treatment) / transport to the screening centre
Even if your screening test result is normal or negative (meaning you are not at high risk), you could still go on to develop the condition.



https://www.healthknowledge.org.uk/interactive-learning/screening/chapter1
https://www.nhs.uk/conditions/nhs-screening/



Q. Tell me how you take consent?
in the guise of the screening program, i identify the patient info (complying with GDPR) who i am, what my role  my intent to perform photograph capture (screening) and assessment (grading) on a given patienT, send the data securely to salford, where the central data center is managed. Finally we would like to use the photos for research purposes but this is optional to and NOT a condition of performing DRS.

I also identify that this consent is required in order to allow the patient to participate in the DRS program

If patient declines what has been offered, we advise them we are unable to take said photos for the DRS, BUT it doesnt interfere with their right to access the service at a later date.

we have a similar configuration with work following the GDPR update, in so that we advise the patient that during their time at our practise, we would like to store & process their personal information, and are they ok with that? if they say no, then we advise unfortunately under these circumstances we are unable to offer them (the patient this care) our services, and either invite them to re-consider or offer them alternative treatment (another optician)



Q. When has consent been a challenge and how did you manage the situation?
Can think of two angles

one (language barrier) its not uncommon to conduct eye tests via a translator, but on one occasion it involved explaining the risks or performing cataract surgery with an elderly cantonese woman (who daughter was acting as translator*), initially patient was worried about the post op care requiring the use of drops to be instilled four time a day & her arthritis would hinder her ability to look after herself in such a way, and was on the verge of declining the cataract surgery. whilst i was about to offer & say this is part of the process we discuss with the patient on ensuring there was the right care in place post-operatively in so that the HES would make sure community nurses would have been available for it, it was instead her daughter interjected* & offered that between her (daugther) and her three sisters all living locally there would.

* - there is an implied assumption that a translator provided by the patient (ie not an official NHS approved translator) is going to acting on the patients best interests and is imparting every aspect of what i have said as part of my duties to the MY patient and not giving them a potted version to suit their needs of ease of translation / time constraints.
* - one could also argue the opposite that an NHS supplied translator (something i have only experienced in working with NHS england - no such service was available in NHS wales & i have many a time when a Px declined to use our services because we (a private company were unwilling to freely supply a translator)) or similar any professional translator who has no direct affiliation with the patient will reflect as near as possible translation without the input of bias
both have the merits - the former is arranged by the patient but we have no way of verifying their intent or skill set of translation, the latter needs to be booked in advance (2 weeks) so cant be used for same day / emergency services


two (cognitive / capacity) - patient is too young / has learning difficulties / acquired cognitive issues (list is almost limitless

further example would be husband & wife attending jointly for an annual eye sight test, one of which has Alzheimers leading to memory loss. As part of my test i found cause to refer one of them on


Q. Tell me when you have needed to use others in the consenting process?

language barriers - recording who is acting as the intermediary

Minors? gillick competence refusal of treatment & Mental Capacity Act (2005) play a factor
https://www.nhs.uk/conditions/consent-to-treatment/children/


mentally infirm / significant learning disabilities / substance abuse

https://www.nhs.uk/conditions/consent-to-treatment/capacity/



Q. What is confidentiality?
Confidentiality involves a set of rules or a promise usually executed through confidentiality agreements that limits access or places restrictions on certain types of information.
https://en.wikipedia.org/wiki/Confidentiality

in the guise of healthcare - i am only able to discuss the patients care with the patient, with someone else agreed upon with the patients consent (be it issued there & then ie husband asking after wife's care or longstanding ie mentally disabled person accompanied by the carer / representative with a LPA (lasting power of attourney)



Q. What is the main data protection legislation?
https://www.gov.uk/data-protection = "The Data Protection Act 2018" is the UK’s implementation of the General Data Protection Regulation (GDPR)
The "General Data Protection Regulation" 2016/679 is a regulation in EU law on data protection and privacy for all individuals within the European Union and the European Economic Area. It also addresses the export of personal data outside the EU and EEA areas. Implementation date: 25 May 2018
https://en.wikipedia.org/wiki/General_Data_Protection_Regulation

previously "The Data Protection Act 1998" (c 29) is a United Kingdom Act of Parliament designed to protect personal data stored on computers or in an organised paper filing system. It enacted the EU Data Protection Directive 1995's provisions on the protection, processing and movement of data.
this "1998" Act replaced the "Data Protection Act 1984" and the "Access to Personal Files Act 1987"
https://en.wikipedia.org/wiki/Data_Protection_Act_1998



Q. Tell me a time when you have ensured the security of your patient’s data using both manual AND electronic methods?
Every day - we use electronic system for data processing of px records on stores on propertary software. accessed via a user ID & password key system. This system has further sub divisions - as an optom i can access all DO / CLO / 00 features, but an manager would only have access to back end / admin facilities. Whenever i am about to leave a terminal alone it gets logged out.

physical records are generated for the given appointment (there & then) along with NHS paperwork. Once said paperwork is finished with it is electronically scanned on our secure servers and the paper record it is securely deposited in a "shred bin"

(we have elected to off-set "shredding" to an dedicated data destruction firm - to which we are beholden to their own rules that said data is securely destroyed beyond reasonable recoverable range)




Q. Why is data recording important for patient care?
charting health / well being of a being
documenting presented symptoms
logging which investigations were under taken along with respective results
the ability to compare past & present results to determine if anything changed
to protect ourselves against legilative action