Oriola Patient Support Program - patient engagement in practice

Patient engagement in practice – how to improve Carsten and Anders’ lives

Do you know Carsten and Anders? I mean, you don’t actually know them, because they are fictional people, but let’s pretend for a moment that they are mutual friends of you and me.

Carsten and Anders met ten years ago at a friend’s birthday party. They fell in love, moved from Denmark to Sweden, and settled down in a small village in the north of Sweden. They continued their lives, working as teachers with a keen interest in the outdoors and never missing the bridge games every other week with their friends.

Two years ago, Carsten was diagnosed with a neurological disease. This turned their quiet life upside down. Initially, receiving a diagnosis and realising that there was a treatment available to slow down the progression gave some comfort.

Two years later, Carsten feels that his ability to live independently is slipping away. He is becoming dependent on Anders not only practically but also for organising everything related to his treatment. They have slowly transitioned from being a couple to being patient and carer, and they dislike it intensely. Both notice that their friends have grown tired of hearing about the disease.  

To make matters worse, Carsten has to travel to the university hospital every three weeks for infusions. This routine is taking over his life. The travel takes almost a day, followed by hospitalisation and poor sleep in the ward surrounded by other patients. The infusion itself only takes two hours, but the whole trip consumes two days, leaving him exhausted for days afterward—and he's missing out on the bridge games. He doesn't feel in control of his treatment and lets Anders take charge. This makes him passive and, at times, depressed.

Tailored Patient Support Programmes

At Oriola, we assist pharmaceutical companies in providing support for individuals like Carsten and Anders. Our programmes are tailored to suit specific treatments and patients' needs. We offer homecare services, dedicated phone or digital support, and educational resources.

Consider the impact if an Oriola nurse visited Carsten and Anders at home to administer the infusion. By helping Carsten become more independent and proactive in managing his disease, we would significantly improve the quality of life for both Carsten and Anders. Additionally, this approach would relieve the healthcare system and save society money by preventing unnecessary travel and hospitalisation. Our Patient Support Nurses work closely with prescribing clinics to ensure they stay well-informed.

Our nurses and pharmacists help patients every day to regain control and provide relief to family members who often take on the caretaker role. They achieve this through home visits, as well as dedicated phone and digital support and education.

We provide dedicated support programmes where nurses and pharmacists contact patients at set times throughout the treatment journey to follow up on treatment and provide knowledge—such as disease awareness, tips on travelling with medication, or other relevant topics for the specific treatment. The goal is always to have informed patients who are active leaders in their treatment. As we are a true Nordic organisation, Carsten could receive help in Danish if needed, despite living in Sweden.

We also provide education to patients, family members, and healthcare professionals. These educational sessions are tailored to fit the needs of the programme and can be conducted in person, online, or through short videos. We educate healthcare professionals on managing medical devices, teach patients hygiene techniques to prevent injection site infections, and provide family members with information to better understand the disease and the treatment their loved ones receive.

Each Patient Support Programme we offer is unique and may consist of one or all of the elements described above. They are purpose-driven and must have a clear benefit for patients, healthcare providers, and our clients. This is the Oriola PSP trinity.

Adding PRO studies to make patients' voices heard

To amplify patients' voices, our Patient Support Programme collaborates with Oriola’s Real World Evidence Team to conduct Patient Reported Outcomes (PRO) studies by collecting data from patients in our PSPs. This provides valuable insights for our customers, useful for reimbursement processes, and helps us refine the patient support programmes for the direct benefit of patients.

Patient Support Programmes may be complicated, but we make them easy

While there is no explicit legislation in any of the Nordic countries relating specifically to PSPs, various regulations impact the programme based on its setup. In addition, there are ethical guidelines from national pharmaceutical trade organisations that must be interpreted.

Oriola is the vendor in the Nordics with the longest experience in patient support programmes. We understand the legislation and guidelines affecting your patient support programmes, from data privacy to pharmacovigilance requirements. We have a robust Quality Management System that is GxP compliant and considers the legal expectations of caregivers.

Many patients like Carsten and Anders face challenges due to severe illnesses. Although treatments are available, they are often time-consuming, adversely affecting patients' quality of life. Instead of living as individuals, they become defined by their condition, leading to poor adherence to treatment protocols. Our Patient Support Programmes aim to address these issues by enhancing patients' lives and ensuring they follow their treatment plans effectively.

Whenever you or your patients encounter obstacles, we’re here to help.