In July 2016 Shared Intelligence (Si) was commissioned to conduct a light-touch review of Marie Curie’s Information and Support (I&S) services. The purpose of this was to provide more information about the views of users and non-users of the service and to produce a report summarising the findings. This was followed by an analysis of a survey on the new Palliative Care Knowledge Zone (PCKZ) launched in January 2017.
The first stage consisted of user and non-user research. Questions that we were seeking to answer in respect of the experiences of users included:
- Are users getting the information they need?
- Are users getting the support they need?
- How did they first access the service?
- To what extent is the I&S content enabling service users to make informed decisions?
- How can the service be improved?
The user research was conducted by capturing views through an online survey with service users and follow-up calls. The survey was live from February to mid-May 2017. It was placed on the online support pages, with a pop-up prompting users on the page for two minutes or more to take the survey.
Marie Curie was also interested in the views of non-users, particularly those from under-represented groups including young people, older men and BMEs. In order to capture the views of these non-users, we held six focus groups, facilitated using an agreed topic guide to gain an understanding of why the service was not being used by these groups.
We were also commissioned to analyse the results of Marie Curie’s survey on its new PCKZ, launched in January 2017. The survey sought to address whether the project was meeting its service objectives and outcomes, as well as how the information hub is being used, how it could be improved and how it should develop for roll-out.
Methods and approach
The main methods we used were:
- Desk review of the first phase of work Si conducted for Marie Curie in 2015, acting as a baseline.
- An online survey of 36 I&S service users and follow-up interviews with five people.
- Six focus groups of non-users, reaching 60 people in total from a variety of backgrounds and locations.
- An online survey of 60 PCKZ users.
Results and outcomes
The I&S service
Our research found that Marie Curie has a strong brand and strong degree of satisfaction from those who do use their I&S services. Its main challenges do not relate to the quality of their services but a lack of awareness from non-users about the breadth of their information and support offer. The survey, telephone interviews and focus groups emphasised how positive people are, both about the Marie Curie brand and the information and support they provide. However, the non-user research implied that there is a lack of awareness about the I&S services and how they can help anyone having to come to terms with a terminal illness.
In the I&S service’s next phase, we recommended to Marie Curie that they should prioritise getting its message out there so that people have no doubt they cover all aspects of terminal illness, and are not just there for someone diagnosed with cancer. Most non-users we spoke to were surprised to hear that Marie Curie is there for matters related to terminal illness such as rights at work and pensions. At present, the biggest barrier to increased use of the I&S service is a lack of awareness about how far Marie Curie’s offer extends.
We also made a set of specific recommendations to Marie Curie to improve their I&S service offer. These included:
- Making printed materials widely available in community spaces.
- Ensuring these materials are accessible to everyone (including using images of people from all backgrounds and ages).
- Piloting having lines of communication open 24/7 or staggering opening hours to include night-time.
- A marketing drive to disprove the assumption that Marie Curie only offers support to cancer sufferers.
Analysis of the PCKZ survey results led to a number of conclusions. Respondents had an overwhelmingly positive view of the PCKZ. The results showed that 97% felt the service met their needs, 95% thought the tone was appropriate and 92% said that the depth of information was pitched right. However, we advised Marie Curie to consider the balance of its content between health professionals and families/individuals seeking advice. Although it was clear that most respondents felt the balance is right at the moment, this was not a unanimous view, with a number of suggestions for additional content pitched more at health professionals.