Patients must be at the heart of everything we do- no decision about us ,without us

25 Jul

imageUnder the NHS Constitution, you have
“the right to be involved in discussions and decisions about your healthcare, and to be given information to enable you to do this.”

There are times when you need to make decisions about your health. This could be about which treatment is best for you, or whether you should have a screening test.
To address this patient decision aids (PDAs) have been developed to help support difficult decisions in which patients need to consider benefits versus risks.

Decision aids prepare patients for decision-making by increasing their knowledge about expected outcomes and personal values. The PDAs are not meant to be a substitute for discussion with a skilled Doctor or nurse but will supply up to date evidence to help a patient and healthcare professional come to a decision about the best way forward. It is hoped that their use in such discussions will result in better informed, patient-focused decision-making.

A patients idea of what is in their best interest may be quite different from what a health professional perceives as the best decision. The decision may be influenced by many factors such as previous experience, influence of the media or culture. However, it is important that the health professional during a consultation has up to date information concerning options and can provide. Realistic expectations.

Many patients are now more informed and are able to carry out their own research and in some instances this can form a useful platform of discussion.
I am frequently challenged about treatment following articles written in the ‘Daily Mail’ so much so that I always tell new students much to their surprise that at least 5 mins of their study time each day should be studying the health section in the Daily Mail! Also patients attend with print-outs or other references from the Internet.
steps of PDA use in consultations
1. Describe the clinical condition(e.g.atrialfibrillation)
2. Describe the treatment options (e.g. no treatment, aspirin, or warfarin) and outline the dilemma (all have risks and benefits, and different patients view the risks differently)
3. Offer a further, more detailed discussion. Some patients are content with the healthcare professional deciding, some prefer a joint decision, others wish the healthcare professional to provide the information but wish to make the decision themselves
4. Work through the PDA, explaining the images and adjusting for baseline risk if required
5. Allow the patient time to consider what they wish to do. They may wish to take away a copy of the PDA and discuss it with family or friends

Use of PDA’s is now recognised nationally and NICE recommended that people should be offered information about their absolute risk of cardiovascular disease and about the absolute benefits and harms of an intervention over a 10-year period. This information should be in a form that:
• presents individualised risk and benefit scenarios
• presents the absolute risk of events numerically
• uses appropriate diagrams and text

NHS Health Checks in Ealing, North-West London
The NHS Health Checks programme was delivered locally by Primary Care Trusts (PCTs) in England.(now replaced by Clinical Commissioning Group(CCG)
The Department of Health requires that all adults aged 40–74 years are invited for cardiovascular risk assessment by 2013.
Ealing has a relatively socio-economically deprived population of 375 000, with a high proportion of residents from ethnic minorities. The local Health Checks programme is delivered by practice nurses and health-care assistants in general practice. Disease-free individuals estimated to be at, or greater than, a 20% 10-year risk of a CVD event were targeted in the first year of the programme (1 September 2008 to 31 August 2009); the method of risk estimation is detailed subsequently.

The PCT provided each general practice with a list of patients to be invited in year one, and the practice then contacted patients by a letter inviting them to attend a Health Check. Each practice was responsible for completing a full Health Check, including appropriate laboratory tests and reminding non-attendees. The local programme started before the national roll out of NHS Health Checks in April 2009. Ealing went beyond the Department of Health requirements by including patients with diagnosed hypertension and those prescribed statins and commenced screening at the age of 35 years, due to the high burden and earlier onset of CVD and diabetes in the area. CVD risk estimates were based on the informationrecorded in the GP information system in the past 5 years.
The screening process has become increasingly sophisticated and those participating will be aware of the process and how other illnesses are taken into account, family history aswell as measurements of blood pressure,cholesterol,blood sugar, weight height and BMI. Exercise as mentioned in a previous blog is calculated by the GPPAQ ( to determine if a patient is inactive or to what degree they are active and with all this information the cardiovascular risk (the risk of heart attack in the next 10years) is calculated. If a significant risk is identified the patient is seen by the doctor who will discuss treatment options discussing the reasons for treatment and evidence why it should be implemented and allowing the patient to reflect on this referring to a PDA.
imageThe risk is explained in this case using a Cates plot which is the use of 4 face categories to visually indicate the following:

People not affected by a treatment (green faces for those with a good outcome and red for those with a bad outcome)
People for which treatment changes their category from a bad outcome to a good outcome (yellow faces)
People for which treatment causes an adverse event and changes their category from a good outcome to bad outcome (crossed out green faces)
It is important to avoid framing the information, resulting in an unbalanced picture of either benefits or harms. As an example, consider the PDA for use of statins to reduce the risk of cardiovascular (CV) events in patients with a 20% 10-year risk of CV events. The Cates Plot looks like this
We could say only ‘Over the next 10 years 80 people will not develop heart disease or have a stroke’, or we could say only ‘Over the next 10 years 20 people will develop heart disease or have a stroke’. The first phrase could create greater reassurance, and the second greater concern. Best practice recommends presenting the data in both ways. We also need to use words which convey that there is an irreducible uncertainty; it is impossible to know what will happen to any individual person and say whether he or she will benefit from the treatment or not.
These people will not have a CV event, whether or not they take a statin- green
These people will be saved from having a CV event because they take a statin- yellow
These people will have a CV event, whether or not they take a statin – red

When a CVD check is carried out you will be shown the Cates plot relevant to you.
This can be used in many situations where treatment is discussed with the patient so that they can make an informed decision.
More about this concept can be seen on

An expanding directory is being made to cover a wide range of conditions for use by health professionals.
The same idea has been used by a well used website and deals with more everyday problems

Smoking cessation. Tennis elbow. Carpal tunnel syndrome
Leg cramps. Enlarged prostate. Contraceptive choices.
Menorrhagia (heavy periods). Plantar fasciitis. Warts and verruca
Irritable bowel syndrome

They help people think about the choices they face in the testing, treatment or management of their condition. They describe where and why choice exists and provide information about the options available to them.

Typically a decision aid will provide, for each option, information on potential outcomes, benefits and risks, and the frequency and likelihood of these.

As many treatments relate to
Types of decision support:
There are two main types of decision support: extensive tools, which patients can access before and after seeing a healthcare professional; and shorter tools, which are used within the actual consultation.

Extensive decision support tools
These tools were the first and are the most common type of decision aid. As such, they have also undergone the most research.
They include:

patient information leaflets and booklets
DVDs and audio tapes
interactive media and
web based tools.

Brief in-consultation decision aids
Although these are relatively new, healthcare teams have found these brief tools to be extremely valuable in implementing shared decision making in clinical practice.

The clinical teams at Cardiff have focused on developing and testing Option Grids.
An Option Grid is designed for sharing with patients during consultation. It enables the patient to compare the various options available in relation to the factors that are important to them personally. The grid helps do this by providing side-by-side answers to the questions that patients frequently ask when they face important decisions.

All these have been developed during the past few years in a concerted attempt to keep patients at the heart of everything we do. In my experience involving patients in decision making improves compliance aswell as outcome of treatment. When I stated in Medicine the patient was totally at the mercy of the health professional making the decision thankfully this has changed.


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