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Why Involved Patients Help you Create Real Impact – Interview with a Patient Organisation

October 23 2018

Today, healthcare is becoming increasingly more personalised, with diagnosis and therapies that are tailored to the patient, rather than a one-size-fits-all approach. Putting the patient at the centre when developing new treatments and technologies, not only improves the outcome for the patient, it also makes the treatment more effective from a resource perspective. In EU funded projects, patient inclusion is recommended, but you should not just think about this as a box you need to tick off, but rather how patient inclusion can add value to your project and improve its chances of creating real impact. We have had the pleasure of interviewing Jana Pelouchova, who is a Board Member and Secretary of the European Cancer Patient Coalition, to hear her insights about the important role of patient inclusion in research and development projects.

Jana Pelouchova is a chronic myeloid leukaemia patient for 16 years, and in 2006 her experiences led her to become founder and chair of the patient organisation Diagnoza Leukemie in the Czech Republic. Today, she is also involved in several international patient advocacy networks and projects, and is a Board Member and Secretary of the European Cancer Patient Coalition (ECPC), which is the largest umbrella organisation of cancer patient associations in Europe. The statutes of ECPC requires that all board members are people who have been personally affected by cancer either as patients or as caregivers. Jana is an advocate for people with rare cancer forms, and is Chair of the Rare Cancer Working Group within ECPC. We have asked her about her experience with patient involvement in projects, and why it is important.

Involving patients is not just about reporting and informing, but actually asking for the patients’ insights and involving them in decision-making. So make it a serious involvement, not just ticking the box. - Jana Pelouchova 

Tell us about the role of ECPC

ECPC is an umbrella organisation uniting patients’ voices for the sake of patient equality in the EU, with the aim of ensuring access to timely and affordable care as well as improved care for cancer patients across Europe. Our presence in Brussels makes us able to partner with other stakeholders e.g. the European Medical Society, and take active part in discussions in the European Parliament and European Commission. In addition to our advocacy work, we also provide information and support for our national member organisations, empowering them to get more involved in policy and research. Research is one of the key pillars for ECPC. Today, there is a high demand for patient partners in EU funded projects. But in the past, patient involvement was not a given, often patients could not even get access to their own data. Inviting patients to give feedback on unmet needs and expectations has been a revolutionary change, but in some cases it is still not a given that patient perspectives are included in projects on national level, and it remains a challenge to be overcome.

Why is it important to involve patients in projects?

Patients are the consumers of the healthcare system, and they are the experts on patients’ unmet needs and expectations. In order to have real progress in care and technology we need to study the conditions and burdens of each cancer disease, and we also need to study what is considered to be an improvement from the patient’s perspective - because it might not be the same as from a clinicians perspective. New technologies, which can better assess individual cases or that can help the patient at their own home, can reduce visits to the hospital, and thereby also the discomfort for the patient and the extra costs. Involving patients in your project, and getting their insights on side-effects and unexpected or unmeasurable positive effects, will help you tailor your product to the patient, and make it more likely to become a success and make real impact.

Do you have an example of a project where you felt involved in a good way?

An excellent example is project ELBA, which is a project researching how liquid biopsies can be used to detect and identify specific cancer types and thereby improve the prognosis for cancer patients. By using liquid biopsies you only need a minimally invasive blood test to determine a targeted therapy that matches the tumour type or mutation type of the cancer, which makes the outcome of the therapy much better than when you just shoot bullets blindly. ELBA is an ITN funded project, which is training PhD students in this technique. This is something that can really create a breakthrough and I am  happy to be on the advisory board on behalf of ECPC. This is clear innovation, which can really change the story of  cancer patients. As advocates we want to see as many positive changes, also in areas where the prognosis is not so positive yet.

How can researchers and companies become better at involving patients?

Involving patients is not just about reporting and informing, but actually asking for the patients’ insights and involving them in decision-making. So make it a serious involvement, not just ticking the box. Think about what you as a researcher or company can expect from the patients, in order to improve what you are working on. Think about how to use the research and data gained from the patient community to find out in which direction to go, so that your final product matches the needs of the patients affected by this disease.

The people living with the disease can capture the “real-world” data of what it means to live with the disease in everyday life, which goes beyond the data investigated during clinical trials. They can give you insights in how it affects their quality of life, their overall comfort, how the therapy changed their life e.g. being able to take care of yourself, continue with your job, take care of your family financially and feel more positive about life in general.

Get in touch

At ttopstart we are passionate about projects that can help change the story for patients, and we are exited to be partners in projects such as ELBA, where there is potential for real breakthroughs. Our project managers help you to include all stakeholders in your project, so you can create real impact. If you are interested in hearing more about how we can support your project, get in touch with us by filling out the form below or send us an e-mail at info@ttopstart.com.

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Contact

Camilla Jensen, MA
+31 (0)30 7370779