Pitches 2018-08-03T11:27:12+00:00

Pitches

BeyondRCT

Using the Participatory Narrative Inquiry (PNI) method with Cerebral Amyloid Angiopathy (CAA)

Drs. Marco Koning, StoryConnect and Dutch CAA Foundation

from 12:30 till 14:00

Marco is senior researcher at StoryConnect In his daily work he helps organisations to discover new insights based on working with the information in stories. He is board member of the Dutch CAA Foundation. CAA is a brain disease that causes recurring haemorrhages and infarctions. This leads to paralysis, dementia and death. People die immediately or they deteriorate with each new haemorrhage and die. The disease is incurable: 1 in 4 people over 60 get CAA. Marco carries the hereditary variant of CAA, and is currently employing a PNI-study to generate insights from his fellow patients on interventions and circumstances that may postpone the moment the disease will manifest itself. The study, done at his own cost and time, is yielding results that formal researchers that have to follow formal routines can only dream of.

Gradual development of an experience-based research cohort in diabetes type 2: the Stichting Voeding Leeft approach

Dr. Peter Voshol, Louis Bolk Institute

from 12:30 till 14:00

Diabetes M type 2 can in many cases be reversed by lifestyle and dietary approaches. The knowledge is long existing, yet appealing evidence lagged behind. Stichting Voeding Leeft designs relatively small experiential programs in which individuals take on adaptations in food and lifestyle. Results are monitored. Gradually a large cohort is created that generates convincing data.

From citizen-research to an RCT with promising food supplements for Cystic Fibrosis

Samantha Schut, citizen-researcher and mother of a CF-patient. Web blog on CF and food supplements

from 12:30 till 14:00

Samantha Schut has spent a couple of years to find food supplements that work very good for her son with Cystic Fibrosis (CF). She has done so using existing published knowledge, exchange through a patients forum, and keen and sometimes intuitive observations and conclusions based on trial and error. The value of her approach was finally recognized by prof. Hugo de Jonge of Erasmus MC, who was able to develop more in-depth and formal RCT research on the drug. Samantha’s ‘formula’ continues to be tested and developed in an informal way by a large number of CF-patients, yielding very personalised outcomes.

The Big Move: from patient data to Health Data Cooperatives. The ‘My Data Our Health’ approach

Drs. Roel Kamerling, Director Medical Delta

from 12:30 till 14:00

A fundamental question in citizen-driven research concerns ownership of the data. First, there is a fundamental right to own them. Second, organising all sorts of data around the individual increases the value of the data of all individuals together, and hence increases the speed of development of biomedical insights, products, lifestyle advice etc. So, the organisation of data storage, retrieval and interpretation is extremely relevant. The My Data Our Health project gradually develops a cooperative model to ensure a responsible flow and use of personal data.

Text mining on GIST cancer – making sense of unstructured Facebook-contributions by GIST-patients

Gerard van Oortmerssen

from 12:00 till 12:30

Gerard van Oortmerssen is a survivor of GIST (Gastro Intestinal Stromal Tumor), a sarcoma-type rare cancer. He is chairman of the board of Patientenplatform Sarcomen, the Dutch patient organisation for sarcoma patients. He also is a board member of SPAEN (Sarcoma Patients EuroNet).
He has a professional background in research in digital technology and is presently guest researcher at Leiden University. In 2016 he initiated the Patient Forum Miner project.

Many cancer patients, in particular those with a rare cancer such as GIST, have a strong need to connect with other patients to share information and experiences. Facebook groups and dedicated Internet discussion forums provide excellent opportunities to connect with fellow patients worldwide. These unstructured discussion forums contain a wealth of medical data as well as information on side effects, strategies to cope with side effects and experienced quality of life. A textmining tool will be briefly discussed and examples will be given of results obtained from a Facebook discussion group for GIST patients.

Gradual development of an experience-based research cohort in diabetes type 2: the Stichting Voeding Leeft approach

Dr. Peter Voshol, Louis Bolk Institute

from 12:30 till 14:00

Diabetes M type 2 can in many cases be reversed by lifestyle and dietary approaches. The knowledge is long existing, yet appealing evidence lagged behind. Stichting Voeding Leeft designs relatively small experiential programs in which individuals take on adaptations in food and lifestyle. Results are monitored. Gradually a large cohort is created that generates convincing data.