To be STRONGER THAN CANCER

Engaging with patients & caregivers remotely

Background

People affected with cancer are at loss upon receiving the news.  Very quickly, questions in relation to areas such as treatment, side effects, nutrition, finances and emotions begin to build up.  Many are confused or overwhelmed with well-meaning but unqualified advice or have no answers at all.

Families have little avenue to turn to for credible advice. Some surgeons, oncologists and healthcare professionals are focused on the treatment aspect of the disease, and are not well versed with the ‘what’ and ‘how’ of survivorship.  The issue becomes larger for people without access to support resources, which tend to be concentrated in urban areas.  In addition, most cancer related civil societies are focused on certain types of cancer.

Given the scenario, the National Cancer Society of Malaysia (NCSM)’s goal was to provide extended support to patients and caregivers. These include:

  • cancer information
  • counselling
  • qualified guidance
  • a forum for the community to share and support each other

The project was made possible by way of sponsor from DIGI Telecommunications for the creation of the Stronger Than Cancer mobile app and website.  Three major actions to kick-start and conclude the project included:

  1. Setting up a project team that is multidisciplinary and inclusive of all stakeholders: the tele-communications sponsor, the website and app designers, the education team and strategic planning personnel from NCSM
  2. Engaging with cancer survivors of various age groups, mixed genders and cancer types.
  3. Engaging cancer survivors from step 2 (above) to test the app for user-friendliness and content

Our digital tools are:

  • A ‘Stronger Than Cancer’ mobile app (free download on iOS & Android)
  • A ‘Stronger Than Cancer’ website with an extensive site map
  • A toll-free cancer helpline with voice call and email options

Performance since introduction of the CIS in March 2016

  • Thirteen per cent of people who called the helpline came for face-to-face counselling
  • About two thousand people have made calls to NCSM, downloaded the app or visited the website

In cases where callers were invited for face to face counselling, they benefited from deeper survivorship support.  Some of them stepped up to participating in on going wellness and wellbeing programmes or support groups.

If your organization is considering the same effort, here are some top tips:

Essential tips for creating digital support

  1. Find a sponsor or two.

Tele-communications companies and award winning mobile app developers have a huge interest in adopting projects of this nature, as it aligns with their business focus.  You may want to pitch it as a CSR programme with opportunities for joint publicity

  1. Engage with target users

Our focused group discussions with potential users helped us create useful content and pointed us to the level of user-friendliness required by older users

  1. Don’t start from scratch

Refer to two or three credible sites for content and acquire permission to use.  You can refer to the same sources when creating the sitemap

  1. Discuss with other societies that have created their own apps to determine the helpful features. From this exercise, we found that adding an ‘Ask a Nurse’ forum, in addition to the community forum, was important. This is because  the former provides a space for medical questions, or those that are more urgent
  2. Localise the content

Directory of resources and food tips needed to be changed to fit the Malaysian society.

  1. Request for links to be created among the different platforms

This is a time saver.  Edits on one platform are reflected on the other, automatically

  1. Consider future needs

This is a money saver. Build the ‘infrastructure’ for the future at the start, such as including other languages, and other ways of communicating such as chat capabilities for future additions

  1. In the contract with the sponsors, add the clause that your organisation is allowed the freedom to include and / or promote other sponsors in the future. This is unless the original sponsors are willing to maintain, promote and improve the app and website for the long term

In the next phase of this project, NCSM will increase its promotion to the public and hospitals.  In addition to that, NCSM aims to improve cancer knowledge among future healthcare professionals via the app and website.  Educating future health professionals empower them to be advocates of public health, contribute to early detection and help us provide support to more patients and caregivers.

Contact details for further questions

Sharon Lee, National Cancer Society of Malaysia (NCSM)

sharonlee@cancer.org.my