We make choices every day of our lives. Some are minor, while others, such as those relating to our health, could have significant long-term implications.
In this country health screening is not mandatory; each type of screening is a choice. People can decide whether or not to have it based on the information we provide and their own attitudes and values.
So why do we focus on choice rather than just making screening compulsory? Wouldn't compulsory screening help more people?
The key thing is that screening programmes are offered, predominantly by the NHS, to people who had not sought advice about that problem. Nor would be they necessarily think they are at risk.
We know that the screening tests have false positives (they wrongly tell people that they have the risk or problem when they don’t) or that people don’t have a problem when in fact they do.
Much effort goes into making sure that chance is minimised but cannot be completely eliminated. This means that people who weren't worried about something might be made worried or (if they have more tests) harmed when they would never have had a problem.
It is unethical not to tell people about this and allow them to choose what it right for them. If they are more concerned about the possibility of a false positive then they may consider that the screening programme is not for them.
So why do we offer programmes? Each screening programme offered by the NHS will do more good than harm for the whole group of people who are offered the programme.
This is why it is so important to give people full information so they can decide for themselves. But how do we help people make an informed choice that is right for them?
Informed choice – what is it all about?
The report Informed Consent in Antenatal and Newborn Screening (2011) uses a definition of informed choice as one that is based on relevant knowledge, is consistent with the decision-makers’ values and can be made at a time and place where a person, faced with alternative choices, is able to make their preferred choice.
This report acknowledged that, for informed choice to happen, people need more than just to be provided with information; the information must be understood and presented in a way that does not suggest that there is a right or wrong choice.
There are a number of methods we use to help people make these important and sometimes life changing decisions.
The NHS Abdominal Aortic Aneurysm Screening Programme developed a screening patient decision aid to help men and their families understand the potential benefits and risks of screening so they can decide if they want to be screened, based on the available evidence.
This is also an important tool for GPs, helping them to respond to patients’ questions and concerns, discuss the screening process and support patients in making an informed decision.
The published information we provide to patients and health professionals is crucial.
The principles of informed choice led to the development of a completely new antenatal and newborn screening booklet.
New bowel cancer screening leaflets were also published in 2013 as part of Informed Choice about Cancer Screening.
The principles we follow to help people in the decision making process include:
- People should understand it is their right to accept or decline screening and this choice should be clearly communicated;
- The information should be balanced and include detail about benefits and harms;
- The information should be easy to understand and written in plain English. More detailed information is available online for people who want to find out more;
- The information should be scientifically accurate;
- The resources are regularly evaluated so they can be improved in future;
- Key people, including the public and health professionals, are involved in the development of the information.
Breast screening is an excellent example of the amount of work that goes into creating quality information for patients.
Breast screening does save lives (1,300 per year according to the Marmot Review). But for some women, they may be diagnosed with a cancer, leading to treatment, when the cancer may never have become life-threatening.
So it is clearly very important, in this case, that women understand the potential for harm before making a decision about breast screening.
Over 1,000 people were consulted in the development of the most recent leaflet, as part of an independent review in 2012. This review included critics of the breast screening programme and women of screening age. The final product was universally seen as an improvement over previous versions.
But it is not enough to rely on online tools and published information. The role of health professionals is absolutely crucial in the decision making process. Therefore, we have an extra duty to make sure health professionals are equally aware of the risks of screening, as well as the benefits, and are able to explain this balance, clearly and in an unbiased way, to those thinking about screening.
To support health professionals promote informed choice around screening we developed a national training programme called ‘Screening Choices’ in 2005. All NHS staff had the opportunity to undertake training in various formats from e-learning to formal events. The electronic component was used over 10,000 times and the taught sessions covered the whole of England. The resource is now being developed into a stand-alone e-module.
Could we be doing more to help people make these choices?
We know that public understanding of screening varies. People also understand and relate to information in different formats and using different approaches. Some people prefer descriptions, others diagrams or videos. Many people don’t have time to read more than the basics, but some want to read everything they can about a subject.
That’s why we have produced a range of materials that everyone can find useful. The concept of informed choice in health screening is a constantly evolving process and, as such, we keep all our resources under regular review, introducing new ways of communicating with people and updating what we already produce.
To further improve the way we communicate the risks of screening, and to ensure a consistent approach, the UK National Screening Committee is establishing a public information and professional development group to share information and best practice across the four UK countries. This will provide a platform for regular discussions and knowledge sharing in order to develop a quality approach to information.
We’ve come a long way over the last few years in terms of producing world class public information. Our online screening information is now part of NHS Choices, where more people can find it, and our leaflets are read by millions of people every year. We also have some great online decision aids. But there’s a lot more we want to do, such as producing better video content to support our leaflets and using other digital channels and social media.
As usual, if you have any ideas about how we can better support the public and health professionals to understand screening and the choices that are available, please do let us know.