Research operations and services

Multidisciplinary projects

Future medicine is moving towards multidisciplinarity and other integrated approaches. I have been already working on streamlining the flow of patients under evaluation for deep brain stimulation. Future UHN services might be dedicated to:
1. a neuromodulation team, based on the idea of having the figure of the functional neurologist along with the well-recognized figure of the functional neurosurgeon
2. a combined program for the borderzone between movement disorders and epilepsy (e.g. Fasano et al. Neurology 2014;82:2250-1), a pilot project is already in place

Consent to Research

In line with UHN's goal of focusing on big data and maximizing research output, the best way is to be able to tap into anonymized patient records. That's not the only step we need to take though. Abiding by TCPS2 policies, we need to obtain patients' consent to access their medical records. The simplest way to do that? A checkbox.

On every patient clinic intake form, requisition, survey, include the following checkbox items:

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Topic: Research operations and services

Jul 19, 2016 12:43pm

Consent to Research

In line with UHN's goal of focusing on big data and maximizing research output, the best way is to be able to tap into anonymized patient records. That's not the only step we need to take though. Abiding by TCPS2 policies, we need to obtain patients' consent to access their medical records. The simplest way to do that? A checkbox.

On every patient clinic intake form, requisition, survey, include the following checkbox items:

1) I agree to allow researchers at the UHN and their collaborators to use anonymized versions (all identifiable information removed) of my medical records for the purposes of conducting research to improve medical care.

2) I agree to be contacted by researchers at the UHN for any upcoming research studies.

This information should be entered into EPR, allowing a way to screen all patients to see whose medical records can be used for research and who can be a potential researcher participant. This mechanism will accelerate the research being done at UHN. (Currently, poster advertisement for studies is a very slow recruitment mechanism).

As a step of accountability, a UHN-wide database of research studies will be useful - a means of seeing what studies a participant is enrolled in - because one of the ethical principles is to ensure researchers are not taking advantage of a participant's low economic status (ie. they participate not completely of their own will - but because of the potential financial gain).

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Comments

Thank you for your question.

It is certainly an aspirational goal at UHN to work towards keeping research and clinical record keeping side by side—it is definitely one of the major goals of the integrated IT digital hospital system that is in planning. We don’t yet know how we will accomplish this, and there are many privacy concerns that we need to consider very carefully.

Christopher Paige, EVP Science and Research

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Topic: Research operations and services

Jul 19, 2016 9:00pm

Multidisciplinary projects

Future medicine is moving towards multidisciplinarity and other integrated approaches. I have been already working on streamlining the flow of patients under evaluation for deep brain stimulation. Future UHN services might be dedicated to:
1. a neuromodulation team, based on the idea of having the figure of the functional neurologist along with the well-recognized figure of the functional neurosurgeon
2. a combined program for the borderzone between movement disorders and epilepsy (e.g. Fasano et al. Neurology 2014;82:2250-1), a pilot project is already in place
3. a program for normal pressure hydrocephalus, a very common disease in the general population, still not sufficiently studied from different perspectives, a pilot project is ongoing at TWH
I'm happy to provide further details if needed.
Alfonso Fasano, MD, PhD

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Comments

Thank you for your question. We are working on crafting a response.
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Topic: Research operations and services

Jun 02, 2016 1:50pm

Transforming UHN into a high-reliability organization

UHN is looking to transform into a high reliability organization (HRO)/learning health organization (LHO). How do you plan to apply this transformation to research and ensure that research at UHN remains of the highest quality?
 

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Comments

We need to identify research hospitals and/or institutes that are considered HROs and examine the strategies and policies they have implemented to achieve their status.
 
We should also support a more open culture to manage research quality and integrity. More emphasis should be put on sharing best and worst practices, identifying trends, learning from critical findings; less emphasis should be put on blame. 
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Topic: Research operations and services

Jun 02, 2016 1:44pm

Integrating basic and clinical research

It can sometimes take decades before basic science research gets to the stage at which clinical collaborations can be established. How will researchers who specialize in this type of foundational research be integrated with clinical teams?

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Comments

 
There will be a sustained and continued investment in basic science research. The real goal will be to facilitate team research by eliminating perceived and actual barriers; for example, co-location, conferences and regular meetings can foster cross-pollination and integrated approaches to discovery.
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Topic: Research operations and services

Jun 02, 2016 1:37pm

Clinical research operations

 
In terms of clinical research, our sponsors are attracted to UHN because of our quality. Clinical trials are becoming more complex, with increasingly rigid timelines. With upcoming cuts eg, decreased slots in medical imaging, there are concerns about how we will maintain our quality of our research studies. 

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The senior management team has to have awareness of clinical research. When we make operational changes, we have to look at them through the lens of what is the impact on clinical research. From a management point of view we are going to need to look at how do we protect our ability to do clinical research.
 
In many cases we have contractual obligations that we want to fulfil. We also have patients who are on trials, many times because they are seeking better care.
 
That process has to be one where research issues are brought to the table before operational changes are made. A shared team will be looking at this to determine the impact on clinical research and ensure that we maintain our commitment to patients on trials and to investigators who lead those trials. 
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