Patients and caregivers can have an impact on research but they need a platform to do so.  Currently, most opportunities for patients and caregivers to get involved in research require patients to contribute in person.  These opportunities may include sitting on a panel to discuss priority setting, contributing to a focus group to review study materials, or traveling to meetings to review research grant applications.  Unfortunately, barriers to participation inherent in these in-person formats can mean that patients and caregivers do not get a voice in research.  Giving patients and caregivers a way to be involved in research virtually can overcome these barriers and add new voices to research.people circle

Barriers to Involvement:

There are many ways for patients and caregivers to get involved in research.  As mentioned above, most of these require them to be available for in-person meetings.  Many may ask patients and caregivers to make a long-term commitment and some require travel.  Additionally, though these opportunities are expanding, they are still not very common – they are hard to find and usually only a few patients and caregivers are chosen to participate.

Time – One of the biggest barriers to consider is time.  To ask patients and caregivers to participate in an in-person meeting is asking them to give up time from work, family, taking care of their own health needs, or participating in other social activities.  This is even more important to consider if patients are asked to travel to the meeting (whether locally, nationally, or internationally) or commit to multiple meetings over weeks or months.

Finances – Another barrier to involvement relates to financial considerations.  Patients and caregivers may have to take time off work or who have to pay for babysitters or transportation in order to attend meetings.  While it is best practice to offer honorariums or other forms of payment as well as reimbursement for expenses, not all opportunities do.  And even then, the compensation may not be enough.  This means that many patients and caregivers literally cannot afford to participate and skews involvement to those who have more disposable income.

Other Practical Barriers – Even when patients and caregivers can attend meetings, other practical barriers arise.  Many patients may need special accommodations for their disabilities – whether it be food, seating, parking, or even breaks if the meeting is expected to last a long time.  Patients who need accommodations for traveling must also be considered.  And meetings may need to be flexible as patients and caregivers can often face last minute health issues that mean they cannot attend. 

All of these barriers create stress for patients and caregivers who want to be involved as well as researchers who are trying to coordinate involvement.  This stress then can lead everyone to give up – patients and caregivers may not even try to get involved and researchers may think it is worth the effort.

 

Giving Patients and Caregivers a Virtual Option

Engaging patients and caregivers virtually can overcome many of these barriers and increase their involvement in research.  That’s where The Research Loop comes in.  For patients and caregivers who cannot attend meetings in person because of time, financial concerns, health reasons, or other practical barriers, The Research Loop provides an online forum that allows them to be involved in research.  With a virtual platform, patients and caregivers can provide feedback to researchers at any time of day or night from any location around the world – no travel is needed.  There is no time commitment as patients and caregivers can contribute as much or as little as they want – whether submitting a simple statement or a long analysis, whether commenting on one research or coming back to comment on many, they get to choose what works for them. 

This also eases the stress on researchers who no longer need to organize meeting times and make sure all accommodations are met only to have to reschedule if patients and caregivers have to cancel.  Moreover, it can help bring patients and caregivers to researchers who do not know where to find individuals to participate in their panels, focus groups, etc.  Additionally, the feedback researchers receive may be more dynamic.  Some patients may feel shy or be reserved in a group setting like in a panel, but the ability to submit feedback online can help ease any fears of speaking up and expressing their thoughts. 

We hope that by providing a platform for patients and caregivers to be involved in research virtually, we will be able to add new voices and insight into research.  More individuals will be able to share their feedback and impact everything from priority setting to design to analysis to dissemination.  No longer will involvement be dependent on whether patients and caregivers have the time, ability, and financial means to attend.  And as a result, a diverse set of patient and caregiver voices can help enrich research and set a standard of inclusivity presently not available in the research process.   

Patients and caregivers should all have the chance to get involved in research and we believe that offering an online platform to engage everyone virtually will help transform the research process.  We hope you’ll join us!

Be a Part of The Research Loop

  • If you’re a patient or caregiver ready to engage in research and give feedback, Join Us!  If you have already read research that you want to comment on, you can submit feedback after Registering. 
  • If you’re a patient or caregiver wanting to learn more about the research process and getting involved in research, explore Our Resources. 
  • If you’re a researcher and want to involve more patients and caregiver, Contact Us!  We can post your open-access, published articles on our site for patients and caregivers to review.

For more on why patients and caregivers should have a way to engage in research virtually including the concepts discussed above, see our White Paper, Section IV

 

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