Finding and using knowledge

Shared decision making recognises that people should be actively involved in decisions about their own health, care and support.  Informed consent is central to health and care practice with legal and ethical implications.  It is therefore essential that people are provided with the information and support they need to take part in decisions and share responsibility for choices made about their health and care.  Health and social care professionals must recognise the importance of individual preferences and values, and should involve family members, unpaid carers and advocates where appropriate and where this reflects the wishes of the individual. 

Building trust and forming relationships is key to this process, which requires open discussion and time to encourage questions.

People accessing health and care services, and family members and unpaid carers, may benefit from support to navigate complex and unfamiliar situations and make decisions that are right for them. 

For specific guidance on a range of topics the Right Decision Service has a selection of shared decision aids.  These guides are intended to guide conversations between health professionals and patients.

NHS England has also produced some easy read guides to help people with learning disabilities navigate the healthcare system and participate in shared decision making.

​

NHS Inform

NHS Inform is an excellent source of information that you can signpost people towards.  As well as information about illnesses and conditions, and self help guides on commons symptoms and what to do about them, there is a healthy living section that includes things like keeping active and healthy eating.  

The ‘Info for me’ option at the top of the screen on NHS Inform also gives you the option of printing health information or downloading as a PDF that you can share with others.

NHS Inform easy read guides

NHS Inform also provides a range of easy read guides which provide information in a simple way to help people navigate healthcare information and get to the information they need to make informed choices about their health and care.

ALISS 

Delivered by The Health and Social Care Alliance Scotland (ALLIANCE), ALISS is a directory of local community services such as mental health support, foodbanks, money advice, and more.  It includes details about support groups, local activities and public libraries, and can be a useful resource to keep individuals active and engaged in the community. 

Patient Information Forum

The Patient Information Forum has created a number of guides to help the public find trusted health information.  They cover topics including AI in healthcare, social media, and understanding risk and benefit. View the full collection of PIF guides. 

The PIF tick directory is a list of organisations certified by the Patient Information Forum as trusted sources.  Information from these organisations is produced by trained staff, evidence based, and in easily understood plain English.  View the PIF tick directory. 

Access to the full range of PIF resources requires a paid membership.

SIGN plain language guidelines

SIGN have produced plain language versions of their clinical guidelines suitable for the general public.  Written in an accessible format, these guidelines enable the public to make informed choices about their own treatment and care. 

Third sector web sites

There are a number of third sector websites out there as well which provide good quality information designed to inform individuals and their support networks. UK based charities are preferable because the information provided is relevant to the local context.

Trusted organisations on The Knowledge Network

Further sources of trusted information to support your practice and share with others can be found through The Knowledge Network.  The Trusted organisations page includes more information about a range of organisations including Care Information Scotland, the Care Inspectorate, Iriss and the Scottish Social Services Council (SSSC).

Self-Directed Support 

Self directed support gives individuals more choice and control over how their social care is arranged and delivered.  Further information can be found on the Care Inspectorate website including:

• My SDS - A self directed support toolkit
• The self-directed support practitioner toolkit

Sometimes people may have questions about a headline they have seen on the news, or about a medical article they have found online.  Headlines can often be misleading and medical information can be complex.  For those who do want a deeper dive than the sources above, it can be useful to suggest some key questions to think about.

1. Is the information meaningful to the individual?  We all have different values, so how does the individual feel about the risks and benefits of a possible treatment?
2. How many people took part in the study and were the target group sufficiently similar to the individual's context?
3. What is being measured?  For example, if a paper reports a breakthrough in cancer treatment, are they measuring extension of life, an improvement in life quality or a reduction in the size of a tumour?  The latter is by far the easiest to measure, but may not be meaningful to patient outcomes.
4. What type of statistic is being provided?  Relative risk reduction can be misleading.  Absolute risk reduction gives a much clearer picture. (If absolute risk reduction is 10%, this means 10 people need to receive the treatment for one person to get benefit).
5. Is the information relevant?  For example, despite media interest in the link between the presence of amyloid beta protein in the brain and Alzheimer’s disease a recent Cochrane review reported that anti-amyloid drugs had little or no effect on cognitive decline.
6. How does this paper fit with the existing evidence base?  If one paper is reporting significantly different results from others, it’s always worth asking why.

7. Who is funding research?  Are there any conflicts of interest?  This includes not only financial benefits, but potential ideological interests.

   ​

Our ability to engage in shared decision making is influenced by a range of health inequalities.  Health inequalities can be defined as ‘systematic, avoidable and unfair differences in people's health across the population and between specific population groups’ (Public Health Scotland). Determinants of health include: socio-economic factors; the geography of where you live and work; specific characteristics including those protected by law, such as ethnicity or disability; and socially excluded groups, for example people experiencing homelessness (King’s Fund). 

None of these groups are homogeneous and there are likely to be complexities and intersections between inequalities. Socioeconomic factors, language barriers and cultural beliefs and values may all affect the willingness and ability of individuals to take part in shared decision making. People may face barriers to asking questions or challenging assumptions, particularly when information is complex or services are difficult to navigate. 

But conversely shared decision making can also be a tool to reduce health inequalities.  Involving people in decisions about their own care, prioritising the individual’s preferences, and what matters to them all offer the potential to empower.  A number of studies suggest that shared decision making is associated with positive outcomes including increased patient satisfaction, improved treatment adherence, and improved quality of life (Hoque, F, 2024). 

Your local NHS library service may be able to offer further support and guidance.  For contact details please visit The Knowledge Network local library service

Was this page helpful? Tell us what you think.