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Shared decision making

Today, NICE have released the latest guidance around shared decision making. Here, Dr Helen Bulbeck explains what this means when it comes to your care.

Making empowered decisions about your care

Communication is central to human interaction, to everything we do. Without it, we cannot relate to those around us, make our needs and concerns known or make sense of what is happening to us.

A cancer diagnosis, whether it is a new diagnosis or a recurrence, is frightening. A common theme is the sense of isolation, a lack of voice and the disempowerment that you feel. You aren’t sure to whom to turn, when, and for what, and there is a general feeling of loss of control. You don’t know what support is available, where to seek help, or what questions you should ask. A shift to being empowered begins at the point of diagnosis, with a collaborative and interactive relationship between you and your healthcare team; this empowers us to take responsibility for our condition with the appropriate clinical support. This is called shared decision making (SDM).

There remain major challenges to this change, for example, from moving from the position of seeing the healthcare professional just as an expert giving advice, to seeing them as an enabler who supports us to achieve our goals. There is also the challenge for us to move from seeing ourselves as passive recipients of care, to becoming activated and taking responsibility for our own contribution to improving our health and wellbeing outcomes and being empowered to do so.

 What is shared decision making?

 SDM ensures that we are supported to make decisions that are right for us. Only we know what our context is, what our appetite for risk is and what our values are. We are the expert on us, and the clinician is the expert on treatment options, if the options are appropriate. SDM is a collaborative process through which a clinician supports us to reach a decision about treatment, which could be no treatment. We know too that shared decision making and weighing up pros and cons of whether to treat, or not to treat, helps people to reframe problems, generate insights, shift dynamics, and change practice. Using shared decision-making allows everyone to become copilots in their care, so that we see a new model of maintenance of wellness as well as treatment of illness.

The SDM conversation brings together:

  • the clinician’s expertise, such as treatment options, evidence, risks and benefits
  • what we know best about our preferences, personal circumstances, goals, values and beliefs.

 Why is SDM important?

 Shared decision making is important because:

  • It can create a new relationship between individuals and professionals based on partnership.
  • People want to be more involved than they currently are in making decisions about their own health and healthcare.
  • Both individuals and clinicians tend to consistently overestimate the benefits of treatments and underestimate the harms.
  • It has the potential to enhance the way resources are allocated and reduce unwarranted clinical variation.

How does SDM happen?

SDM focuses on achieving specific, immediate goals that relate to precise challenges. For example, weighing up the pros and cons of having a particular treatment, overcoming a problem with caring, or coming to terms with entering the next stage of treatment. All of these are effective forms of self-management, and all rely on effective communication, which is in our DNA.

There are a variety of tools available that enable SDM. People can use decision aids when there is more than one option and neither is clearly better, or when options have benefits and harms that people value differently. Decision aids may be pamphlets, videos or web‐based tools. They state the decision, describe the options and help people think about the options from a personal view (e.g. how important are possible benefits and harms).

The two simplest and most accessible tools are outlined here:

The ‘Ask 3 Questions’ approach encourages us to ask 3 simple questions, which leads clinicians to provide higher quality information about options and their benefits and harms. The questions are:

  • What are my options?
  • What are the possible benefits and risks?
  • How can we make a decision together that is right for me?

Decision aids (also called Option GridsTM)[1] are being developed across various cancers. These are simple grids, one side of A4, based on the most current evidence available and are focused on the questions patients most frequently ask when they need to make decisions based on their preferences. Clinicians can select 2 to 3 options to compare, and for select topics, fill in patient-specific data to customise the grid.

There is a 6 step process that is then followed:

  1. Describe: the patient is informed that the goal of using the grid is to initiate a conversation about options, that it is organised as a table to enable comparison, and that it uses questions that other patients have found useful.
  2. Check: patients are asked if they wish to read it themselves or whether they prefer the comparisons to be read aloud.
  3. Handover: the patient is given the grid so that they can mark their copy and jot questions if they wish.
  4. Create space: if they wish to read the grid themselves, patients are asked if they mind if the clinician does other things during this time, so the patient does not feel ‘observed’ as they take time to assimilate the information.
  5. Ask: the patient is encouraged to ask questions and discuss.
  6. Gift: patients are told they should take the grid with them as an aid to memoryand an opportunity to discuss their options with others, as well as to look for more information.

Sources

Bulbeck, H. (2015). Quality of life: what the brain cancer community needs. Cowes: brainstrust.

The Health Foundation. (2016). Shared decision making. [online] Available at: http://personcentredcare.health.org.uk/shared-decision-making [Accessed 3 Sep. 2018].

The Health Foundation. (2012). A simple tool to facilitate shared decisions. [online] Available at: https://www.health.org.uk/newsletter/simple-tool-facilitate-shared-decisions [Accessed 3 Sep. 2018].

NHS England. (2018). Shared decision making. [online] Available at: https://www.england.nhs.uk/shared-decision-making/ [Accessed 3 Sep. 2018].

Seal, R.P., Kynaston, J., Elwyn, G. and Smith, P.E.M. (2013). Using an Option Grid in shared decision making. Practical Neurology, 14(1), pp.54–56.

Stacey, D., Légaré, F., Lewis, K., Barry, M.J., Bennett, C.L., Eden, K.B., Holmes‐Rovner, M., Llewellyn‐Thomas, H., Lyddiatt, A., Thomson, R., Trevena, L. (2017). Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews, 4(1).

[1] Seal, R.P., Kynaston, J., Elwyn, G. and Smith, P.E.M. (2013). Using an Option Grid in shared decision making. Practical Neurology, 14(1), pp.54–56.

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Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php