Patient support programmes: providing meaningful care when you dare to treat rare

Patient support programmes, or PSPs, have helped millions of patients manage and learn more about their condition.

From printed materials to virtual environments, these programmes have provided new ways for life sciences companies to build a direct relationship with not only healthcare professionals (HCPs) and healthcare systems, but also their patients, providing holistic care and supportive direction outside the clinic. But when it comes to rare diseases where, for example, in the UK, one disease may only affect 30,000 people, how do you build a PSP that will have a meaningful, positive impact on patients’ day-to-day lives?

While accessibility is relevant for all PSPs, it’s vital to consider the demographic of patients likely to be using it, their comprehension and ways in which they will be interacting with the provided content, and if their condition affects these interactions. Factors such as age range and physical and mental ability are usually key considerations when incorporating inclusive design aspects, to help remove barriers to engagement and facilitate continued use. Examples of accessibility that can have a huge positive impact include colour consideration, scalable type sizes and clickable areas, simplicity in language and content type, image descriptions, subtitles and optimising for specific devices, such screen readers, which may be used to access the PSP.

As patients’ needs change, PSPs should be able to adapt and continue to provide meaningful content to meet these needs. There are several ways to do this. It can be as simple as providing regular content updates, either through planned content calendars or newsfeeds. These can be incredibly relevant in rare diseases where new research or opinions can change the course of disease management.

Another way, which is slightly more complex, is by building smart ‘tagged’ content that becomes a focus for patients based on responses to inbuilt questionnaires or concerns that have been raised. For example, if patients respond poorly in a validated health-related quality of life questionnaire about mental well-being, content can be recommended to help them consider ways to improve their mood, or how to talk about how they’re feeling to family, caregivers or HCPs.

As well as adapting content for patients over time, it’s important to make use of current technologies and ways of working to build PSPs that remain relevant and beneficial to users throughout their use, such as:

• Video conferencing and live chat functionality instead of telephone support lines
• A mobile app alongside a website
• Connectivity with a medical device to streamline data transmission.

PSPs provide an opportunity for HCPs and healthcare systems, and even interested patients, to build unique long-term data sets of treatment use, disease control and progression on a per-patient basis. By building in the ability to collect data across key measures, such as adherence, dosing, quality of life and physical and mental well-being, there is a tangible way of measuring outcomes through using PSPs as interventions.

This is a vital benefit to HCPs and the healthcare system they work within, where with increased economic and socio-political pressures, maintaining consistent quality of care for patients is becoming increasingly challenging. PSPs, especially in the context of rare diseases, can be a key tool for continued monitoring in and outside the clinic, building a personalised picture of each patient to assist tailored, streamlined care to fulfil his or her individual needs.

Even the best designed PSP won’t be of any help to patients unless they and their HCPs are aware of it. This is an even greater challenge when looking to support such small numbers of patients and interact with HCPs who may have little to no knowledge of the targeted condition. Working directly with patient advocacy groups or charity organisations can unlock two opportunities, through:

• Collaborating on the PSP design and content with those living with the condition you are looking to support, ensuring it answers key unmet needs and pain points in terms of everyday activities or when handing treatment
• Creating a direct avenue for advocacy, from both patient and HCP standpoints, drawing in key opinion leaders involved in enhancing knowledge and advocating for access to treatment and support.