The patient voice in preference research
Patient organisations provide a strong and united patients’ voice, placing patients at the centre of EU Health policy and the forefront of research programmes. Through various Innovative Medicines Initiative (IMI) projects, including PREFER, patient advocates voices have become increasingly present in all aspects of drug development: from fundamental research to regulatory aspects, pricing and reimbursement decisions at the EU-level. Here, Isabelle Manneh Vangramberen, patient representative in PREFER, shares the patient perspective and her view on how it is represented in PREFER.
Patient organisations form clear positions on relevant healthcare policies and advocate for change at international, regional and national levels. They work together and support collaboration to further the agenda of patient-centred health care. Based on consultations, patient organisations also provide resources and training to members, to share best practices and help them thrive.
Isabelle Manneh-Vangramberen is a patient advocate and coordinates patient input in PREFER. She believes academia, regulators, and HTA bodies need to work closely with patients, recognising patients as co-creators of their own health. Her advice to researchers is to actively listen to their patients: “Involve patients in the discussion, and dig deeper! Ask them to explain both the context and the details. Patients, on the other hand, need to try to understand the big picture, asking their doctors how tests, drugs and examinations fit into the overall treatment plan”.
As a patient advocate, Isabelle Manneh-Vangramberen knows that this is sometimes easier said than done. “If you are the patient, you are not necessarily in your best form. Patient advocates and patient organisations are there to help you.” she says. In PREFER, patient advocates and patient organisations play an important role, representing their members. Isabelle Manneh-Vangramberen represents the European Cancer Patient Coalition (ECPC). PREFER includes thee more patient organisations: the Muscular Dystrophy UK (MDUK), the International Alliance of Patient Organisations (IAPO) and the European Patient Forum (EPF). All four are partners in PREFER, ensuring the patients, as one of three key stakeholder groups, are present on equal terms with Industry and Health Technology Assessment bodies.
PREFER looks at how and when patient preferences should be included in the development of drugs and other medical products. Based on evidence collected during the project, PREFER will create recommendations about this use of patient preferences with specific groups in mind: industry, regulators, HTA bodies and reimbursement agencies.
Throughout the project, both individual patients and patient organisations will work together to give input. To ensure this becomes a reality, Isabelle Manneh-Vangramberen is included in the project’s decision-making meetings. Patient representatives also are involved in all parts of the research and discussions in PREFER.
She believes that, at the end of the project, the input ECPC and other patient partners contribute to in the project will help create recommendations that are relevant and useful for the people whose voice the project is looking to find: people who are, or will be, patients.
“Making allowances for patient preferences in healthcare policy decisions can improve the uptake and real-world efficiency of healthcare technologies. Patient preferences can also serve as an important and evidence-based source of information in healthcare decision-making. It is ethically the right thing to do!” Isabelle Manneh-Vangramberen says.
About Isabelle Manneh-Vangramberen
Isabelle Manneh-Vangramberen is a Pharmacist, Public Health Professional, EU Expert and a patient advocate leading the patient input in PREFER through the project’s patient stakeholder advisory group. She is the executive body for all EU Projects at the European Cancer Patient Coalition (ECPC), which is one of the largest patient organisations in Europe.
The European Cancer Patient Coalition (ECPC) is the voice of cancer patients in Europe. With over 400 members, ECPC is Europe’s largest umbrella cancer patients’ association, covering all 28 EU member states and many other European and non-European countries. ECPC represents patients aﬀected by all types of cancers, from the rarest to the most common.
ECPC works for a Europe of equality, where all European cancer patients have timely and aﬀordable access to the best treatment and care available, throughout their life. ECPC believes that cancer patients are the most important partners in the ﬁght against cancer and against all the cancer-related issues aﬀecting our society. They strive to:
- Empower European cancer patients through the dissemination of information;
- Foster co-operation among cancer patients' organisations through joint activities;
- Ensure that state-of-the-art cancer care practices are shared across the EU;
- Make cancer a priority for action on the European health policy agenda;
- Have an active role in shaping European and national healthcare policies;
- Contribute to change or create EU and national laws to satisfy cancer patients’ needs;
- Call for the patients to be increased in cancer research.
ECPC’s role within PREFER:
ECPC leads the Patient Advisory Group. Their role is to make sure patient partners are involved in the work, and that patients’ experiences are taken into account. Together with the other patient partners, ECPC is part of all the work in PREFER, including the development of recommendations for industry, regulatory authorities, HTA bodies, and reimbursement agencies. ECPC also plays an important role in communicating and dissemination the results to patients and member organisations.
By Josepine Fernow