Patient engagement will be difficult as long as ‘normal’ is equal to ‘healthy’

Jana Pelouchova

Jana Pelouchova

Diagnóza leukemie, z.s., Prague

Czech Republic

Constant advocacy by patient groups at all levels is needed to help people with cancer navigate the healthcare system ensuring access to novel medicines which is still a major issue in different countries

For patients with leukaemia, like myself, novel targeted therapies are crucial to survival. However, there are many disparities in access to novel treatments, both between and within countries. The portfolio of reimbursed medicines is governed at a national level, although often there is no correlation between the economic status of a country and a patient’s ability to access optimal medication. Patient access can also be dependent on factors such as place of residence, education and demographic group.

For more than 15 years in the Czech Republic, we were proud of the centralisation of oncology/haematology care in accredited centres of excellence. However, with an increasing number of patients requiring therapy and and longer survival reported – thanks to advances in treatment - the capacity of specialist centres has been reduced. As a result, many patients do not have access to optimal care. I travel 250 km to see my oncologist, but many patients would be unable to do so due to factors such as age, frailty and/or mobility.

A shift in care is required to bring more effective treatment to patients while easing the burden on overstretched centres. This should involve local oncologists who could treat patients under the supervision of specialist centres. Clearly, many clinical trials will continue to be conducted at key centres, but certain novel therapies can easily be administered outside a specialist setting.

Disease-specific patient support organisations can be invaluable in helping patients to navigate the healthcare system, and patient engagement with stakeholders in healthcare systems is also crucial to improving access to effective medication. Constant advocacy by patient groups at all levels is needed; grass-root patient groups are important to identify and communicate gaps in care through collaboration with medical societies, while at a national level, well-respected umbrella patient organisations with access to key stakeholders are required to raise issues such as access to medicines. At the international level, patient networks are well placed to generate robust survey data that can be used to support issues under discussion with healthcare stakeholders, and can be widely communicated, for example at medical congresses and in publications. An example is the chronic myeloid leukaemia (CML) Atlas initiative conducted by the CML Advocates Network, a patient- and caregiver-led global network of 128 organisations for patients with CML from 93 countries. The CML Atlas was an online survey that collected information from patients in 19 countries in Central and Eastern Europe. The survey has provided valuable insights into patient access to novel targeted therapies and could be applied to other regions of the world.

Patient organisations have much expertise and resources to offer in specific disease areas and can be influential within healthcare systems. In the Czech Republic, we have established a national umbrella organisation. It took several years, but we recently reached a consensus on the definition of "patient organisation” and we now contribute to strategic healthcare projects, including legislation. A number of patient organisations also work with regulatory agencies, for example in the UK where various channels of communication have become available; it is a model that many other countries wish to emulate.

There are many challenges to achieving patient engagement; very few patients are willing to become advocates. The stigma of a cancer diagnosis is one of the greatest obstacles to active patient engagement, and will be so for as long as ‘normal’ is considered healthy. It also takes time to empower patients with the knowledge and confidence they need to effectively communicate with the medical community. Patients who survive and are in good health often prefer to return to their professional careers than become patient advocates. The most active patients are generally those with a poor prognosis who are struggling to gain access to optimal therapy. I speak from experience; I am in my twenty-third year of treatment. I did not expect to live this long as I experienced two treatment failures and had a very uncertain prognosis. However, as a patient advocate, I have met and collaborated with some truly inspiring people who have enriched my life in many ways.

Don't miss:

Patient Advocacy Session, How to improve access to medicines through patient engagement, 20.10.2023, h. 16:00 – 17:30, Cádiz Auditorium – NCC. ESMO Congress 2023

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