The importance of the patient voice in support programmes

Patient support programmes should be tailored to individual patient groups, because every condition has its own unique requirements. Providing successful support relies on having intricate knowledge of the patient experience and adapting the programme to fit specific needs.

These five steps will show you how you can create a successful patient support programme by including patient input at every stage, from concept to launch and beyond.

Before designing a support programme, consider your motivations and opportunities – why are we building this programme? In most cases, our motivation is not to dazzle patients with design features or showcase the latest tech, but to improve the patient experience and increase their engagement. One way to crystalise your ‘why’ is to consult with patients at the concept stage – this will help you understand what is currently missing from the patient care journey. Specifically, find out what support already exists in this space, where the gaps are and how this knowledge can be used to create meaningful change. These gaps create opportunities to make a real connection with your patient audience and provide them with something that is desperately needed. At Origins, we engage with patients right at the start of the programme to identify the big wins and ensure they are the focus of our solution.

What works for some patients may not work for others; for example, patients with complex treatment regimens may benefit from regular medication reminders, however, other patients may not want to be reminded frequently about their condition. Early patient involvement is vital and the process should be iterative; fine-tuning is often needed to create a system that can be adapted and personalised to suit every patient.

Investigate and accommodate the demographics that exist within your target patient group. Does the programme require a certain level of technological literacy? Does it require expensive equipment or a modern operating system that is not available to everyone? Are the design elements appropriate, for example, in patients with visual impairment? Are there barriers to overcome in terms of language, location or physical ability? These are all issues that can be accommodated as long as they are recognised early in the process, therefore it’s vital to consult the patient prior to development.

Living with illness can be lonely, but it doesn’t have to be. Providing a way to communicate with other patients with the same condition can make a huge difference. This can be done via healthcare teams, support groups or even through online forums. Consult with patient groups about the level and method of communication that works best for their conditions, whether that be virtually, via a chat function, on the phone or in person. You can then use that information to guide the functionality of your programme.

Ultimately, improving patient outcomes should be a key consideration for every patient support programme. Patients will be more likely to invest their time and attention in a programme they know is likely to help with their condition. Increasingly, evidence supports that patient involvement in the design and delivery of healthcare will enhance quality of life, reduce hospital admissions and improve the effectiveness of health services. So, while the needs and the requirements of different patient groups may vary, patient input can always contribute to the success of a programme.

Nothing is worse than spending time and budget on a solution that patients ultimately won’t use. The latest tech, the sleekest design, the best branding – none of it matters if the end product isn’t relevant to the needs of the patients. And no one knows those needs better than the patients themselves. If you can incorporate these five elements into your programme, ensuring that patients are included in the decision-making throughout the process, you give yourself the best chance of delivering patient support that can change and improve lives.

At Origins, we believe it is important to give patients the opportunity to influence the future of healthcare and share their experiences with others. Educating and engaging patients will help them buy into their own journey, leading to improved adherence and satisfaction with treatments.

Origins is a patient-focused specialist agency, creating and delivering strategy, insights, data and solutions to include the patient voice in every part of healthcare. To find out more about the benefits of the patient voice, please contact Sheetal on contact@origins-patients.com.

References are available on request.