{"id":17688,"date":"2023-11-21T18:39:19","date_gmt":"2023-11-21T18:39:19","guid":{"rendered":"https:\/\/labpatientengagement.ca\/?page_id=17688"},"modified":"2024-03-20T17:50:03","modified_gmt":"2024-03-20T17:50:03","slug":"framework-research-programframework","status":"publish","type":"page","link":"https:\/\/labpartners.ca\/?page_id=17688","title":{"rendered":"Framework"},"content":{"rendered":"\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t
\r\n\t\t\r\n \t\t \t\t\t
Guiding Framework For Patient Engagement In Preclinical Laboratory Research<\/h5>\r\n\t\t\t\r\n<\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t

Our team has developed a guiding process framework that breaks down the stages of preclinical research and identifies opportunities for patient engagement.<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\"\"\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t\t\t\t
<\/div>\n\t\t\t\t\t\t\t
\n\t\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\"\"\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t
\r\n\t\t\r\n \t\t \t\t\t
Our Research Program Aim\u200b<\/h5>\r\n\t\t\t\r\n<\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t

As demonstrated by many reports in the literature<\/a>, we see great value and benefit in partnering with patients and caregivers in research. However, the vast majority of literature has focused on patient engagement in clinical<\/i>\u00a0research. Engagement in preclinical laboratory research (research conducted in cells and animals, prior to clinical trials) is still relatively novel.<\/span><\/p>

We propose that engaging patients in preclinical laboratory-based research, could provide a better representation of perspectives, experiences, and concerns that need to be addressed for proposed therapies, when they are first being developed and tested.<\/span>\u202f\u202f<\/span>Engaging patients in preclinical regenerative medicine and cell therapy research may be of particular interest, as such therapies often rely on the use of human cells and tissue.\u00a0\u00a0<\/span><\/p>

\u202f<\/span>However, at first glance, it can be a little less intuitive as to how patient partners can meaningfully be engaged in lab research. This is a concern that was brought up by a patient partner team member that sparked the idea for this research program \u2013 studying the question:\u00a0How can patients practically and meaningfully be engaged in preclinical, laboratory research?<\/i><\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t

\n\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t
\n\t\t\t
<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t

How will we develop a framework? <\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t\t\t\t\t

We aim to develop a<\/span> process framework <\/span>that will<\/span> guide the implementation of knowledge into action by breaking down <\/span>the stages of <\/span>preclinical research and <\/span>identify<\/span> opportunities <\/span>for<\/span> patient engagement.<\/span> To <\/span>build<\/span> the <\/span>framework<\/span> we will <\/span>1) <\/span>draw from <\/span>existing <\/span>clinical<\/span> frameworks, <\/span><\/span>scoping review evidence<\/span><\/span><\/a>, <\/span>an <\/span>interview<\/span> study<\/span>, and collaborator input<\/span> through deliberative knowledge space meetings<\/span>, 2) conduct an international consensus-building survey<\/span> (known as a Delphi) to obtain broader input, and 3) conduct a pilot test with preclinical laboratory researchers and patient partners to further refine the framework<\/span>.<\/span> <\/span><\/p>

See below to learn more about each step, or click here<\/a> to read our full protocol!<\/span><\/span>\u00a0<\/span><\/p>

\"\"
<\/span><\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

\n\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t
\n\t\t\t\t\t
\n
\n\t\t\t\t\t
<\/path><\/svg><\/span><\/path><\/svg><\/span>Step 1 (Investigate)<\/span><\/div>

Gather data through a scoping review, interview study, existing engagement frameworks.<\/strong><\/p>

As a starting point, we set-out to conduct a comprehensive review of the literature (also know as a scoping review<\/span><\/a>) to identify articles describing preclinical patient engagement. Across the entire preclinical literature, we identified only 32 studies. From these studies we extracted key characteristics, barriers and enablers to engagement. Key themes identified from both our systematic review and a subsequent interview study highlighted that engagement in lab-based research is feasible. However preclinical research presents unique challenges to engagement including that differences in background and research experience can pose as a barrier to engagement and communication.<\/span>\u202f<\/span>\u00a0<\/span><\/p>

\"\"<\/p>


Our studies also identified that supporting factors, such as guidance and resources will be needed to enable widespread adoption of patient engagement in preclinical laboratory research.<\/span>\u202f<\/span>Based on this work, we are now interested in drawing from findings from our scoping review, interviews and existing patient engagement guidance to co-produce a process framework, which can be used by individual researchers, patient partners and research institutions, to help guide preclinical patient engagement.<\/span>\u202f<\/span>\u00a0<\/span><\/p><\/div>\n\t\t\t\t\t<\/div>

\n\t\t\t\t\t
<\/path><\/svg><\/span><\/path><\/svg><\/span>Step 2 (Establish a Deliberative Knowledge Space)<\/span><\/div>

To systematically develop the framework we will hold a series of virtual deliberative knowledge space meetings<\/a>, which are semi-structured discussions that aim to bring together different forms of knowledge, evidence and expertise, to come to a consensus . Our team, inclusive of 14 investigators (clinical researchers, patient partners, preclinical researchers, and a patient engagement specialist), will participate in four sessions, focused on identifying core components for the framework. These will include discussions on clarifying motivations and expectations for preclinical patient engagement, identifying key actors and their roles and activities. Discussions will be captured through recordings and written minutes. We will then synthesize key themes\u00a0 after each of the first three meetings and review findings at the fourth.\u202f Results will be used to shape an initial framework, which will also be supplemented with examples and resources.<\/p><\/div>\n\t\t\t\t\t<\/div>

\n\t\t\t\t\t
<\/path><\/svg><\/span><\/path><\/svg><\/span>Step 3 (Consensus Building)<\/span><\/div>

As a next step, we will then plan to conduct a three-round survey to gather input from national and international partners on the framework<\/strong> (also known as a modified Delphi). We will recruit patient partners, researchers and other individuals (e.g. research funders and network leads) with expertise in patient engagement to ensure a wide range of views are captured. This survey will help to confirm essential components for the framework, identify new ideas, and provide feedback on aspects that should be re-worded or removed. Results will be used by the study team to refine the framework.<\/p>

An International Delphi Survey to Develop a Framework for Patient Engagement in Preclinical Research<\/strong><\/h5>