Raising Voices; encouraging children and young people’s engagement in healthcare
It is essential to gather patients’ perspectives on the care they receive in order to effectively understand the quality of healthcare they experience, and to ensure the delivery of person-centred care (World Health Organization, 2015).
Picker and the Royal College of Paediatrics & Child Health (RCPCH) both share the view that patient-centeredness and a positive experience of care is a key component of care quality (Department of Health, 2008). Furthermore, good patient experience has shown to be associated with better health outcomes for patients, as well as improved clinical safety and effectiveness (Stewart et al, 2000; Doyle et al, 2013). To put it another way, those who say they receive a positive patient experience are more likely to have better health and wellbeing, stronger adherence to treatment and medication, and less likely to experience adverse events in relation to their health.
It is therefore important that patients are engaged with regards to their healthcare, for example that patient experience is measured and understood by healthcare providers, and used to implement change. Engagement can take place on four different levels (RCPCH 2017):
- Inform – e.g. letting patients know their rights around engagement, how to share their voice and views
- Consult – e.g. asking for a patient’s views to inform policy, practice and service design
- Involve – e.g. actively involving patients in reviewing information, supporting solutions
- Represent – e.g. when a patient represents a group of patients at a strategic level to influence change
Patient experience is routinely measured across a range of NHS healthcare settings in the National NHS Patient Experience Programme, which is coordinated by Picker on behalf of the Care Quality Commission (http://www.nhssurveys.org/). Until recently, the programme has focused heavily on adult patients with very little involvement of those under 16 years old. However, the UN Convention on the Rights of the Child (UNCRC; 1989) outlines the legal requirements for engaging and involving children and young people in the strategic influence of their healthcare:
- Article 12 recommends that “Every child has the right to express their views, feelings and wishes in all matters affecting them, and to have their views considered and taken seriously”
- Article 24 recommends that “Every child has the right to the best possible health”.
When the UNCRC is considered alongside the importance of person-centred care in health outcomes and patient safety, it is our opinion that everyone involved in providing healthcare to children and young people should be actively engaging them with regards to how their care is delivered.
Allowing children and young people involvement and representation in service design allows us to go further than consulting with them on patient experience and then informing of changes that healthcare managers have decided upon.
The recent inclusion of care experiences of children and young people into the NHS Patient Survey Programme is a step in the right direction, but there is still a lot of work to do to ensure that feedback is effectively used to improve delivery of healthcare. This should not only be informed by feedback from children and young people (i.e. on a consultative basis), but should also involve their active participation in decision making at a strategic level, to co-produce changes that improve service delivery.
Allowing children and young people the opportunity to influence in terms of changing/improving a healthcare system based on their own first-hand experience, and by representing the views of others, can sound daunting but is perfectly possible. In our experience, children and young people want to help and get involved in decision making around healthcare provision strategically, as long as it’s on the right terms.
We feel that valuing and measuring patient experience is truly embedded in healthcare, but there are still some gaps in relation to seeking feedback directly from children and young people on the next stages. Furthermore, there is a need to move from consultation to involvement and representation in order to actively involve children and young people.
To further explore effectively engaging children and young people in service design and delivery, Picker, in collaboration with the Royal College of Paediatrics and Child Health, are hosting a workshop in November 2017.
Key stakeholders have been invited to discuss and define children’s voice in influencing strategic decisions in the world of healthcare delivery. Both Picker and RCPCH are excited to work with each other on this workshop, which will explore themes from this blog in more detail; considering how children’s voices can be effectively used for strategic influence.
If you are interested in finding out more about this work, and to support development of a strategic voice programme in health services, please contact Emma Sparrow from RCPCH (Emma.Sparrow@rcpch.ac.uk) or Esther Ainley from Picker (Esther.Ainley@PickerEurope.ac.uk)
- Department of Health (2008). High Quality Care For All: NHS Next Stage Review final report. London: The Stationery Office. http://webarchive.nationalarchives.gov.uk/20130105061315/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_085828.pdf (accessed 06/09/2017)
- Doyle C, Lennox L, Bell D (2013). A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open 2013;3:e001570. doi: 10.1136/bmjopen-2012-001570
- RCPCH (2017) RCPCH Guidance. Involving children and young people in Specialised Commissioning. London
- Stewart M, Brown JB, Donner A, et al (2000). The impact of patient-centered care on outcomes. J Fam Pract;49(9):796-804
- UN General Assembly (1989). Convention on the Rights of the Child. https://www.unicef.org.uk/what-we-do/un-convention-child-rights/ (accessed 22/09/2017)
- World Health Organization (2015). WHO global strategy on people-centred and integrated health services. Geneva.