Creating patient support programmes that help patients thrive

Patient support programmes (PSPs) enable us to improve the lives of people with long-term conditions and can positively impact the individual’s experience, as well as clinical and economic outcomes.

There has been growing interest in an evidence-based approach to the development of PSPs as pharma recognises that it can go beyond education to helping patients and/or caregivers adapt their behaviour to improve their quality of life and their health. However, companies frequently struggle to effectively apply learnings from healthcare and behaviour science research in an industry setting.

I reached out to our in-house scientific team of eight behaviour science PhDs for insights on how to best use an evidence-based approach to maximise real-world benefits of PSPs for patients and caregivers. Their academic work includes healthcare research, and provision of health behaviour change and psychological support, and together our teams have worked on more than 50 pharma-sponsored global PSPs.  Here are their three tenets for success:

Our research shows that people with long-term conditions and their families have unmet psychological, emotional or medical needs that are not addressed in routine medical care by existing treatments or through existing ancillary support. These needs vary by disease and by individual and can include emotional burden or distress, adherence support and fatigue – and may have downstream negative clinical impacts. Uncovering these needs and placing them at the centre of a PSP is fundamental to the development of a useful programme and should include patient/caregiver involvement, market research and review of existing published evidence, matched against an analysis of existing support. There is limited benefit in providing materials or services that patients already have access to or that they don’t truly need. Starting with a clear definition of the needs to be met through the PSP and gaps in existing resources also enables PSP development to be as streamlined and efficient as possible.

A multidisciplinary approach that harnesses ongoing end-user co-creation, evidence-based behaviour science and creative expertise produces content that informs patients and HCPs and supports patients to adapt their behaviour. Content is more likely to be effective if it uses psychological theory and evidence and embeds behaviour change techniques.

An example of this is a PSP where we applied principles from Acceptance and Commitment Therapy to help parents manage the psychological burden of caring for children with a rare progressive disease. In addition to enhancing nurse confidence in providing emotional support, caregivers and physicians alike felt this approach equipped caregivers with novel, accessible tools.

Realistically, the best content in the world won’t change behaviour if patients or caregivers don’t engage with it as intended – a common problem for digital programmes. How many of us have downloaded numerous apps only to log in once? There’s a growing scientific understanding of how to engage users in digital health behaviour programmes, a topic I presented at this year’s Society of Behavioural Medicine conference. A key component to ongoing digital engagement is providing tailored and personalised content while limiting the burden of use.

A best practice model is one where engagement and efficacy are routinely monitored and the data is used to guide content and implementation iterations. Thorough PSP evaluation is rare (for multiple reasons) but is essential to enable the field to move forwards.

If you’ve got a PSP that successfully supports previously unmet needs, you want to help as many patients or caregivers as possible to benefit from it. Local markets need to implement it, physicians need to introduce patients to it (in markets where direct-to-patient contact is not permitted) and participants need to enrol.

We’ve found that teams that actively seek out potential implementation challenges from the outset and work with key internal and external stakeholders to overcome those challenges have more successful roll-outs. These efforts can be structured using learnings from Implementation Science (the scientific study of methods that can overcome barriers and maximise uptake of health services and innovation by facilitators). For example, the Consolidated Framework for Implementation Research can support the systematic and comprehensive understanding of barriers to implementation in real-world settings leading to actionable recommendations for improving its effectiveness.

We love the opportunity PSP development gives us to hear what patients and caregivers need and to support them to grow. We strongly believe that following an evidence-based, structured development and implementation process gives the best chance of providing the maximum benefit from PSPs – and of keeping the patient voice at the centre of the process.