Many people, including health professionals and their patients, journalists and politicians it is a challenge to adequately understand and interpret health information. This has several possible causes, such as the great difference between objective, accurate scientific language and everyday language, the difficulty of dealing with probabilities and statistics in real life situations and lastly but probably most importantly, the crossover between the objective and the subjective when your own health and life are suddenly involved. As a result, it is hard for patients to translate the information regarding their illness into taking personal control over the management of their own disease. Things like what questions to ask, which hospital and which doctor or doctors to choose, which decisions to take and what information to collect before making those decisions. What does a screening mean for you? How to judge whether the (often uncertain) benefits of a possible treatment outweigh the risks and harms? Are there options available that are not part of the routine protocol but which you would nevertheless like to consider? (e.g. fitness training pre- or post- surgery to improve your condition, and shorten your stay in hospital, or individual drug sensitivity testing before treatment to ascertain the exact applicable dosage for you personally))
At Inspire2Live we constantly look for ways to take science to new levels in terms of patient motivation, cooperation and results. Better health care is an option!
Our scientific vision – Fellowship for life
In 2011, we launched our Understanding Life program. The program embraced the view that cancer is a life-threatening disease and a systemic problem. It is among the leading causes of death worldwide. About 12 million people are newly diagnosed with the disease and more than 8 million people die from it every year. The problem is systemic because it results from the interaction of a complex set of influences: biological, social and life histories. Our genes are very important, but so are our cells, organs and environment. The way we eat, drink, what we inhale and move around are critical. Smoking, for example, causes cancers in the lung and in many countries about 20%-30% of the cancers is due to smoking. And we also have to look at life historically. We are endowed with a body and a set of genes that grows over time: your body is the result of generations of genes combined into new sets of genes, one group derived from your mother and the other derived from your father. Our personal life begins with two merging cells. We grow up, become adults, get children ourselves and get old. This is life and do we understand life? Because if we do, we do understand the mutations of life.
Improvement of disease and drug response models
We want to take full advantage of new technologies, analysis of data and the ability to assess clear conclusions from the complex and large genomic, structural and clinical databases that are available. We expect to learn how individual genetic profiles can lead to different treatment responses and the development of preventive approaches. This is hard and high science, but its results are of immediate and lifesaving importance to the individual patient. Results should be presented in a clear and concise manner for all stakeholders – patients, clinicians and decision makers alike – to understand and use.
Improvement of clinical practice
We want to expedite and optimize the selection of patients that are likely to benefit from cancer treatments. We aim to change the mindset of both clinicians and researchers, to take into account quality of life issues, patient’s particular preferences and possible harms of a treatment. What is the best treatment for me and why? How do I decide? What alternatives are there? We want the best testing and diagnosis that are available to result in Personalized Medicine: ‘This patient with her defect at this moment needs this individual treatment.’ This is not a dream, this is possible at this moment. It is a great innovation, and not yet integrated in current clinical practice. Its immediate benefits are twofold. The first is preventing so-called “overtreatment”, the application of a medicine that is effective in only a (sometimes small) percentage of patients, but that may have severe side-effects for all patients. Genetic analysis makes it possible to better predict if the medicine has a high or low probability of working for a given patient. The second is using medicines outside the usual repertoire. An example is that in certain cases medication for migraine or rheumatoid arthritis has a reducing effect on a tumor. This is an application that is literally in its infancy and where large databases will have to be gathered before systematic use becomes practical. But gathering those databases requires early adapters among researchers, clinicians and patients!
Improvement of storage, retrieval and exchange of disease-related patient data
Biobanks should function as an open source work environment for researchers and clinicians. Bio banking includes storing data and the sharing of data and knowledge with all stakeholders. We aim to get patients involved in speeding the cancer R&D process “from the bench to the bed and back again” and to get them to work with us to close the gaps within that same project chain. They are the patients, they are the beneficiaries and they should demand a sooner and better outcome of cancer R&D. This can be accomplished because patient should own and maintain the data and give the data available for research and developing treatments.
Reducing the incidence of cancer
We aim to adopt a bottom up approach, with a focus on the experience, activities and values of actual people to increase personal control over the disease in its more chronic forms and fostering a problem-solving attitude. Awareness and health education are key. We demand a government policy that focusses on prevention and not only improving the quality of life after the disease. The government should forbid trade in products that harm health.
Execution of plans for changes and improvements
All that it may require is keen knowledge on what can be done better anyway and to activate the will of the people to get it done. We aim to identify the knowledge gaps, to determine how this knowledge will benefit the patient, and to set up permanent trials in which the gap between new insights regarding treatments and application of the knowledge is increasingly shortened.
Read more in our program plan: Inspire2Live Program Plan Understanding Life