What are some of the reasons that patients have heard to not engage them in healthcare research?
What are some of the reasons that patients have heard to not engage them in healthcare research?
1. We need more "proof" that it works and/or is valuable to research:
1. We need more "proof" that it works and/or is valuable to research:
- In the research article point out that there is not enough research to measure the value of patient engagement so we need to do more research. (@anetto)
- Asking “Do you have any data or references that engaging patients impacts ROI?” (@graceCordovano)
2. It is a culture change, and those are not easy to do:
2. It is a culture change, and those are not easy to do:
- #pt & family centred care (PFCC) is a shift in culture; it needs to be embodied in all interactions with #pts, policies & more. (@couragesings)
- This happened often: *I got fired up when trying to explain my #condition & life events to a person (such as a doctor). *This was judged to be my baseline. My story was treated as a symptom. This made me more agitated. *Sharing made it worse. #Stigma in #Research #HealthCare & #Academics It holds us back. If you read this #tweet or check out the short thread, know that I mean well for all people. Of course I’m biased, but at least I do aim to be inclusive. (@current_mike)
- Death of my son - I would prefer someone reached out - asked,- checked in. Despite being a 'frequent flyer' at our childrens' hospital, not one clinic, administration or foundation formally said "we will miss your child"/ "Sorry for your loss". Additionally as I sit here today sorting all the old papers, reports etc.. I realized that after 17 years on site, alongside employees, contributing to the endless surveys... there is no exit interview, there is no thank you, no recognition pin. There is something fundamentally wrong with a service that does not complete the cycle of feedback, the value of frequent users and the touch base effort to retain 'customer loyalty' while toting "We can only be better together" (@GrandmaKim)
But, when patients are engaged, the value is evident:
But, when patients are engaged, the value is evident:
- We would not know #HowNotToDoPtEngagement if we hadn't been a part of a team that knew #HowToDoPtEngagement! (@BantingJennifer)
- If the teams included patients who would then have the capacity to keep pace with the professionals might we not get better and more actionable results? #patientengagement #teamwork (@CatherineM_S)
- “The lived experience of consumers is just as important as data to drive change” #InnovationinAction (@DinhTammy)
- Engage patients & collect data from lived experience & not support and trusting the findings. Nothing more dismissive to patients. We need #PatientLedResearch to ensure the #PatientVoice is heard & used to implement change. (@SKoczkur)
- Without #codesign and engagement w/pts and #caregivers change can only go so far. Just as we do in our #ChangingCARE projects - pts and #caregivers must be included in ever step of #codesign. (@TheChangeFdn)
Why journals should require a statement on patient & public involvement (@aaldcroft)
Defining patients’ roles leads to meaningful partnership and ethical research (@KLiabo )
"Couldn’t a diversity of minds better tackle [health] problems?" (@PaulLikeMe)
On fine words but little action in shifting power to patients (@allyc375)
Health literacy is not healthcare experience literacy (@graceCordovano)
A shift to family presence and changes made in culture through work with #pts.