Using social media and email to get involved can work, suggests Manda
Transcript
Who want to get involved? I would say nowadays social media, use the internet. If your loved one has a particular let’s just say disability, or ailment, or kind of condition Google it and look how do I get involved with X organization? And then maybe keep calling the company or the organization say are you doing any type of research? How can I participate? Or even send them an email. That would be the best way through social media I would say.
[…]As a newbie toward the world what I had done is on some of the conference calls I’d provide my input, but I’d make sure I listened to what these other caregivers would have to say and then I reached out to someone who I respected and who I thought brought a lot of years of experience, and I asked them. I said how did you get so involved? They can easily quote the multiple journals, multiple physicians, multiple researchers and just asked them ‘how did they do it’? And basically it just takes time. You have to –you’ll get there in a matter of time.
More from: Manda
More content
- Learning From Others – MandaWorking with the same caregiver group over time led to friendships, says Manda
- Improving Patient Care and Experiences – MandaManda learned that there are researchers who are interested in working with families who have children living with disabilities
- Developing Partnerships – MandaManda suggests that families share known opportunities for others get involved as a patient partner
- Advice to others – MandaUsing social media and email to get involved can work, suggests Manda
- Skills for partnership – MandaBe raw, says Manda, don’t sugarcoat it when describing your experiences to researchers
- Role determination – MandaManda is confident about the role she likes to play but recognized the need for flexibility
- Motivations – MandaManda feels that patient representation is lacking in research related to children and disability
- Developing partnerships – MandaManda feels that it’s not always clear to families about how they can get involved in research