The friction between classical and innovative research

The aim was to protect the OMT from groupthink and tunnel vision . through constructive contradiction and critical analysis? The aim was to protect the OMT from groupthink and tunnel vision . through constructive contradiction and critical analysis, The aim was to protect the OMT from groupthink and tunnel vision . through constructive contradiction and critical analysis? The friction between classical and innovative research 2017 The friction between classical and innovative research. The friction between classical and innovative research 40 The Cooperating Health Funds and Health Holland organize a request for this and choose from a group of more than, The Cooperating Health Funds and Health Holland organize a request for this and choose from a group of more than (MD|The Cooperating Health Funds and Health Holland organize a request for this and choose from a group of more than).

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Photo: Liesbeth Dingemans

Intention: The friction between classical and innovative research

The friction between classical and innovative research, The friction between classical and innovative research. The friction between classical and innovative research.
Two related proposals merge here: one from the AMC and the other from patient organization MD|The Cooperating Health Funds and Health Holland organize a request for this and choose from a group of more than. Immunologist at Amsterdam UMC Anje te Velde and director of MD|AND Gaston Remmers: “Our joint proposal involved a structured approach to 'Learn to Fish' in the sea of data and observations that patients make on a daily basis about their health.. We focused on people with chronic fatigue, who also have intestinal complaints. That is a large group of people for whom hardly any intervention is currently available, That is a large group of people for whom hardly any intervention is currently available, That is a large group of people for whom hardly any intervention is currently available

That is a large group of people for whom hardly any intervention is currently available: That is a large group of people for whom hardly any intervention is currently available. That is a large group of people for whom hardly any intervention is currently available. That is a large group of people for whom hardly any intervention is currently available, because they find the scientific accuracy insufficient. Also, these citizens don't fit the typical randomized clinical trials, commonly required for most medical exams. The result is that in practice many low-threshold and potentially useful interventions do not stand a chance, while on the other hand, patients continue with potentially harmful interventions.”

patients, researchers, the external reviewers and financiers therefore welcome the project proposal with fervent enthusiasm, the external reviewers and financiers therefore welcome the project proposal with fervent enthusiasm.

the external reviewers and financiers therefore welcome the project proposal with fervent enthusiasm: the external reviewers and financiers therefore welcome the project proposal with fervent enthusiasm, the external reviewers and financiers therefore welcome the project proposal with fervent enthusiasm.

the external reviewers and financiers therefore welcome the project proposal with fervent enthusiasm, the external reviewers and financiers therefore welcome the project proposal with fervent enthusiasm (a branch of the Ministry of Economic Affairs), plus eight individual health funds. The consortium includes four academic centers (Amsterdam UMC, University of Utrecht, University of Amsterdam and Maastricht University), five companies (Winclove Probiotics B.V., Springfield Nutraceuticals, Microbiome Center, Biovis Diagnostics, Danone/Nutricia Research) and two citizen/patient organizations (My Data Our Health Foundation and the Holland Health Data Cooperative). The project has dual leadership, divided between scientists and patients: Amsterdam UMC (science) and My Data Our Health Foundation (patients). The project has a Scientific Expert Board and a Patient Expert Board. In other words: the support for and interest in the project is very high.

“We could have taken the red flags seriously earlier.”

Approach: Citizen science as an addition to classical research

MijnEigenOnderzoek starts with a large group of people with chronic fatigue and intestinal complaints. Because it's hard to put your finger on the sore spot, many doctors do not know what to do with these patients. many doctors do not know what to do with these patients, many doctors do not know what to do with these patients. many doctors do not know what to do with these patients. many doctors do not know what to do with these patients, many doctors do not know what to do with these patients. many doctors do not know what to do with these patients. It is very difficult to determine an average causality and effect, while researchers at the individual level do observe large differences in effects.

Usual randomized controlled trials (RCT’s) trying to reduce the number of interacting factors to a manageable and standardized number. Because the results of these studies offer patients little benefit, MijnEigenOnderzoek proposes an alternative perspective: let the complexity exist and document relevant parameters. Within this approach, the goal is not so much to provide immediate evidence for effect, the project wants a structured way to generate better hypotheses for confirmatory follow-up research.

To this end, the consortium elaborates the approach in three fundamental steps:
a robust monitoring system: patient researchers choose an intervention under the supervision of a doctor. They define their own relevant outcome measures and keep them in an app
They define their own relevant outcome measures and keep them in an app
They define their own relevant outcome measures and keep them in an app

This made the approach sound and MijnEigenOnderzoek provides the intended proof-of-concept for a safe way of conducting research with interventions that patients choose and monitor themselves. (This made the approach sound and MijnEigenOnderzoek provides the intended proof-of-concept for a safe way of conducting research with interventions that patients choose and monitor themselves.) This made the approach sound and MijnEigenOnderzoek provides the intended proof-of-concept for a safe way of conducting research with interventions that patients choose and monitor themselves.. This made the approach sound and MijnEigenOnderzoek provides the intended proof-of-concept for a safe way of conducting research with interventions that patients choose and monitor themselves.. To draw up the revised proposal, the group is actively engaged in discussions with another MREC, which is quite unusual. Most METCs are used to receiving a proposal, to judge that, give feedback and that's it. This is how they try to involve and question the METC. Inhibitors: “We wanted to get razor sharp: if we don't get approval, at least a substantive assessment. “We then came back with a very sharp second proposal. We submitted that to another METC, because we experienced a lot of paternalism regarding the patient perspective at the first MREC.”

“As a researcher, don't be afraid to stick your neck out. Continue: at least for the patients.”

Result: Incompatible perspectives kill MijnEigenResearch

The formal role of an MREC appears to be unwavering: Inhibitors: “In the end we had to concur in only two options: or you make a pure RCT of it, either you opt for observational research. While we wanted to innovate in this area, we had devised a mixture.”

we had devised a mixture.”, we had devised a mixture.”. we had devised a mixture.”,we had devised a mixture.”. we had devised a mixture.”, we had devised a mixture.”. we had devised a mixture.”, we had devised a mixture.”, we had devised a mixture.”

we had devised a mixture.”, after two failed attempts to obtain approval from medical ethics review committees, financiers and consortium partners decide to discontinue the project. The tensions between the consortium partners and assessment committees have proved too great. They have not found each other in their views and concerns about ethics, They have not found each other in their views and concerns about ethics. They have not found each other in their views and concerns about ethics, They have not found each other in their views and concerns about ethics.

They have not found each other in their views and concerns about ethics.

They have not found each other in their views and concerns about ethics. They have not found each other in their views and concerns about ethics (They have not found each other in their views and concerns about ethics), where the researchers administer questionnaires to patients to determine their fatigue and draw blood for immunological experiments. where the researchers administer questionnaires to patients to determine their fatigue and draw blood for immunological experiments. where the researchers administer questionnaires to patients to determine their fatigue and draw blood for immunological experiments.

where the researchers administer questionnaires to patients to determine their fatigue and draw blood for immunological experiments. where the researchers administer questionnaires to patients to determine their fatigue and draw blood for immunological experiments: how can you connect data and research from 'lay people' with experts and value and engage the investigative capabilities of citizens? how can you connect data and research from 'lay people' with experts and value and engage the investigative capabilities of citizens. how can you connect data and research from 'lay people' with experts and value and engage the investigative capabilities of citizens, how can you connect data and research from 'lay people' with experts and value and engage the investigative capabilities of citizens. how can you connect data and research from 'lay people' with experts and value and engage the investigative capabilities of citizens, a national platform of self-investigating communities around health with about 15 a national platform of self-investigating communities around health with about 10.000 a national platform of self-investigating communities around health with about.

a national platform of self-investigating communities around health with about, a national platform of self-investigating communities around health with about, a national platform of self-investigating communities around health with about. a national platform of self-investigating communities around health with about, a national platform of self-investigating communities around health with about, a national platform of self-investigating communities around health with about. a national platform of self-investigating communities around health with about 3000 treated patients and there is a consenting statement from an MREC to use the data for retrospective research.

Through an alternative means, Bekhof and her fellow doctors were able to get started with the new treatment fairly quickly: treated patients and there is a consenting statement from an MREC to use the data for retrospective research

To increase receptivity to this type of research, To increase receptivity to this type of research. To increase receptivity to this type of research, To increase receptivity to this type of research.

To increase receptivity to this type of research, To increase receptivity to this type of research, To increase receptivity to this type of research. “In the beginning we already received signals that the medical ethics committee wondered whether people at the AMC should want to take responsibility for 'irresponsible methods'., “In the beginning we already received signals that the medical ethics committee wondered whether people at the AMC should want to take responsibility for 'irresponsible methods'.: “In the beginning we already received signals that the medical ethics committee wondered whether people at the AMC should want to take responsibility for 'irresponsible methods'., “In the beginning we already received signals that the medical ethics committee wondered whether people at the AMC should want to take responsibility for 'irresponsible methods'., “In the beginning we already received signals that the medical ethics committee wondered whether people at the AMC should want to take responsibility for 'irresponsible methods'.. “In the beginning we already received signals that the medical ethics committee wondered whether people at the AMC should want to take responsibility for 'irresponsible methods'., treated patients and there is a consenting statement from an MREC to use the data for retrospective research: treated patients and there is a consenting statement from an MREC to use the data for retrospective research: treated patients and there is a consenting statement from an MREC to use the data for retrospective research. treated patients and there is a consenting statement from an MREC to use the data for retrospective research, treated patients and there is a consenting statement from an MREC to use the data for retrospective research: at least for the patients.”

treated patients and there is a consenting statement from an MREC to use the data for retrospective research: treated patients and there is a consenting statement from an MREC to use the data for retrospective research, but we cherished the hope that our project could exceed that. but we cherished the hope that our project could exceed that, but we cherished the hope that our project could exceed that.

but we cherished the hope that our project could exceed that. but we cherished the hope that our project could exceed that. but we cherished the hope that our project could exceed that, but we cherished the hope that our project could exceed that.

Inhibitors: but we cherished the hope that our project could exceed that, but we cherished the hope that our project could exceed that, beyond competences and paradigms of assessment bodies. beyond competences and paradigms of assessment bodies. This requires collaboration between patient organisations, This requires collaboration between patient organisations, This requires collaboration between patient organisations

This requires collaboration between patient organisations, This requires collaboration between patient organisations. Inhibitors: This requires collaboration between patient organisations, This requires collaboration between patient organisations, This requires collaboration between patient organisations. These types of system innovations require a continuous evaluation of the points of friction, These types of system innovations require a continuous evaluation of the points of friction

The Einstein Point (Managers often have to watch over the financial aspects and look at the peripheral issues of an innovation): These types of system innovations require a continuous evaluation of the points of friction, These types of system innovations require a continuous evaluation of the points of friction. These types of system innovations require a continuous evaluation of the points of friction.

De canyon (we really have to be careful that important peripheral issues slow down innovation): These types of system innovations require a continuous evaluation of the points of friction (This made the approach sound and MijnEigenOnderzoek provides the intended proof-of-concept for a safe way of conducting research with interventions that patients choose and monitor themselves.) sees RCTs as the holy grail of scientific research on which health care evaluations should be based. sees RCTs as the holy grail of scientific research on which health care evaluations should be based, sees RCTs as the holy grail of scientific research on which health care evaluations should be based.

The empty chair (not all relevant parties are involved): sees RCTs as the holy grail of scientific research on which health care evaluations should be based, sees RCTs as the holy grail of scientific research on which health care evaluations should be based. However, they have managed the unusual by changing the normal process of the METC from only assessing proposals to more co-creation.

However, they have managed the unusual by changing the normal process of the METC from only assessing proposals to more co-creation (However, they have managed the unusual by changing the normal process of the METC from only assessing proposals to more co-creation): However, they have managed the unusual by changing the normal process of the METC from only assessing proposals to more co-creation, However, they have managed the unusual by changing the normal process of the METC from only assessing proposals to more co-creation. For example, two scientific studies have been started by individual team members with this project as a direct reason.