Let’s face it: I’m a person with diabetes who has had one child and who received continuity of care throughout pregnancy. I’ve seen and know first-hand the benefits of being involved in my own care plans, having a team that supports me and treats me as an equal (acknowledging my 25 years of lived experience with Type 1 Diabetes). I also know the benefits of when my feedback has been acted upon and utilised to improve the services provided.
However, academically there are minimal studies showing the benefits of consumer input when developing interventions for women with diabetes, especially in terms of pregnancy planning. While there are many/numerous studies that show the benefits of medical intervention, many lack utilising the valuable evidence from lived experiences of the very consumers studies want to target.
So, without further ado, here’s some of the MANY reasons why consumer input is so valuable in healthcare interventions:
- Improved outcomes!
Studies where women felt they were treated as equals by healthcare professionals have longer durations of success and greater reception to the target consumer audience than clinical interventions (Rasmussen et al, 2013). The consumers are usually experts at what does and doesn’t work with the target demographic due to their extensive experience engaging with HCPs and expertise with their own self-managements. They are in a unique position to provide immediate and relevant recommendations. For example, I recently recommended an app to my healthcare team that allowed me to store insulin rates. This means if my insulin pump malfunctions and I need to manually inject, I can access the app to determine my correct dosages. To date the team have recorded minimal success with sick day management plans; they have now started recommending the app to patients, which has been received positively.
- They know your target consumers better than you do
Recruiting through peer support methods and/or engagement with a peer with the same condition yields stronger recruitment and lower attrition rates (Edwards, 2016). With the pandemic causing many healthcare offerings to be delivered virtually, an increase in intervention models being delivered through an app or mobile can be expected. With consumer input, researchers can identify the technological trends and usage of the target audience, and provide recommendations on the best medium to deliver content from to best engage the audience. A study in 2019 showed that community engaged research conducted via trained peer specialists was successful based on the mobile platform developed and implemented by the consumer team (Fortuna et al, 2019). In contrast, clinical staff set up a social media intervention related to contraception and pregnancy planning via a public Facebook page. I advised the staff, based on my experiences and on delivering a local healthcare district peer support intervention, that our target audience was not likely to engage due to the nature of contraception and pregnancy being a personal matter (consumers would be less likely to engage with social media if it was public – their family and friends could see it!) We are now implementing/reaching out to and engaging with our target consumers via a confidential, private, online peer-led resource which has received great feedback from both consumers and healthcare professionals alike.
- Lived experience
Many meta-ethnographic studies demonstrate how studies that utilise the experiences and perspectives of consumers have more validity in the eyes of targeted consumers (Berg et al, 2000). Plus, it makes your findings more accessible to target consumers – especially if the focus is on sharing the experiences of other consumers for their benefit! An online music community I was a member of (and were my case study for my Masters research project on increasing consumer engagement) found that by sharing videos of members putting lesson content into practice promoted better interaction and engagement with content. This initiative was put from a consumer satisfaction survey that suggested more involvement of students on providing content. From this, a weekly live-stream music “jamming” session is now held with students across the world, and engagement has increased greatly!
I could go on all day about the benefits of consumer input in healthcare interventions but will leave it at that for now. I will say, however, that as a person with diabetes I am actively trying to use the resources of fellow people with diabetes in my research – I’m trying to reference the great work of fellow consumers, because it’s good to practice what I preach 🙂
Berg, M. and M. L. Honkasalo (2000). “Pregnancy and diabetes–a hermeneutic phenomenological study of women’s experiences.” J Psychosom Obstet Gynaecol 21(1): 39-48.
Edwards, H., et al. “The pregnancy journey for women with Type 1 Diabetes – a qualitative model from contemplation to motherhood.” Practical Diabetes 33(6): 194-199.
Fortuna, K., et al. (2019). “Application of Community-Engaged Research to Inform the Development and Implementation of a Peer-Delivered Mobile Health Intervention for Adults With Serious Mental Illness.” J Particip Med 11(1): e12380.
Rasmussen, B., et al. (2013). “Transition to motherhood in type 1 diabetes; design of the pregnancy and postnatal well-being in transition questionnaires.” BMC Pregnancy and Childbirth 13(54): 1-11.