How would you define the concept of patient engagement in research? Which strategies can be followed for improving patient participation?
The concept of patient engagement can be illustrated as a “ladder of participation”. The steps of this ladder stand for different degrees of intensity of engagement. From bottom to top those steps are: co-option, compliance, consultation, co-operation, co-learning and collective action. It is important to notice that proper patient engagement starts with the step of consultation, since compliance refers to the involvement of patients as patients in clinical studies or as partners in interviews. Especially qualitative research with patients is sometimes regarded as patient engagement which is not the case unless patients are a part of the team as collaborative partners, e.g. as peer interviewers. However, the ladder of participation does not rate the different degrees of participation. All of them are valuable and their useful implementation depends on the context.
In my opinion, the most important “strategy” is a genuine interest in the patient perspective, respect and empathy. I specifically name empathy, because this also encompasses to accept and not to judge the experiences and needs of patients. Which may not be easy at first as evaluation and criticism are vital aspects of science. That is why proper patient engagement may lead to an overall cultural change of science.
What is the expected contribution and impact of engaging patients in programs such as TRANSCAN-3?
Patient representatives contribute their specific perspective and expertise from the broad setting of living with certain health conditions. This is complementary to the scientific perspective and expertise of diseases and health problems. Thus, the patient perspective brings more knowledge and data to the table enabling the investigation of problems from different angles and also to develop a more patient oriented research. So, the expectation is to contribute knowledge and aspects that are specifically not a repetition of the scientific facts from a research perspective.
The impact of patient engagement can be very broad and diverse. It often leads to a more patient oriented research, e.g. a very practical impact would be the adaption of a study protocol to be more suitable for patients to take part in the study and thus improving patient recruitment and lowering drop out quotes. As equally important, patient engagement leads to relationships between scientists and patient representatives, to a mutual deeper understanding and often to further research ideas and collaborations.
What are the main hurdles hindering patient engagement in cancer research and how can we improve patient engagement in future cancer research?
There are different hurdles depending on what we are looking at. On the side of the patient representatives, we simply need more people to act as patient representatives. This people require resources: time, energy, financial support. They also need encouragement, which brings us to the other side – the scientific one. There we need a welcoming culture – the aforementioned genuine interest, but we also need to enable patient representatives to co-research. This can be done via qualification and the development of instruments, e.g. adapted evaluation forms, so that patient representatives are able to work scientifically.
Having listed some of the hurdles, it is evident that funding organizations play a crucial role in improving patient engagement in research. Via funding patient representatives as co-researchers in scientific projects and involving patient representatives in the implementation of funding calls and in review boards, funding organizations can significantly improve overall patient engagement. As a patient representative in the scientific advisory board of TRANSCAN-3 I am very thankful for the opportunity to bring in the patient perspective and discuss research calls with different stakeholders.
What do you expect most from cancer research in the next 5 years?
I expect a more holistic approach regarding cancer. Cancer research is mostly thought of research for new therapies or clinical trials. This is without a doubt of very high importance. But cancer affects the whole life of a person in their immediate setting – their family, friends, the workplace and also their financial situation. Since cancer is more and more a chronic than a deadly disease – thanks to all the therapies! – I expect more research investigating and improving the life with cancer with all its various aspects.
In your opinion, what is the biggest shortcoming in cancer research today that needs to be solved as soon as possible?
In my opinion as a patient representative, the biggest shortcoming is the insufficient patient orientation and the pressure to investigate “safe problems and harvest low hanging fruit”. The first one may seem to be strange since cancer research aims to help cancer patients. But it is tightly connected to the second one which is an overall systematic problem of how research is financed and as a result conducted. As far as I can see, at the moment cancer research is mostly results oriented and aims to be successful in the scope of projects. Additionally, research projects must also fulfil other scientific needs: publications, qualifications, career advancements and of course to receive further funding. As a former researcher myself I understand that. But this leads to investigating “safe problems”, while we also need risky, creative and highly explorative research to tackle the still enormous challenges cancer patients and their clinicians are confronted with. That for, all of us stakeholders need to talk about the research system and whether it works in a way to allow for the research that we need. And here, I think, lays the hope, expectation and contribution of patient engagement: to lead towards a more patient oriented and more explorative research.