For those who have been following my journey: Finally the patient engagement research is published in a peer review journal called Health Expectations.
Title: Barriers and Facilitators to Accessing Healthcare for People With Parkinson’s Disease in Latin America: A Qualitative Study
Link: http://dx.doi.org/10.1111/hex.70380
This all began in 2021 when I was invited by Dr Jorge Jesus Llibre-Guerra to lead the patient engagement for a project funded by the Michael J. Fox Foundation. I was undertaking a Masters at UNSW and secured support from UNSW to supervise the project: Catherine Spooner and Mark Harris. They and Ana who led the groups and Matthew and Jorge have always there for support, albiet timezones away.
I oversaw study design, data collection, and community engagement across 10 countries, with 4 online focus groups across 5 plus time zones at once and in Spanish.As far as we know this is the first patient engagement into the needs of people with Parkinson’s in Latin America.
A big thankyou to everyone who has supported me on this long and challenging journey and expecially my co authors Catherine Spooner, Ana Margarita Rodriguez Salgado, Matthew Prina, Joel Rhee, Jorge Jesus Llibre-Guerra, Dani Kim, Juan J. Llibre-Rodriguez, Mark F. Harris
I believe it is within the interest of research journals to help improve the translation of research , in both senses of the word: language translation and application/usefulness of the research on the ground in a timely way. I want to have an official translation attached as a supplementary document or have it linked as a separate DOI searchable in Spanish.
I chose Healh Expectations journal because it has an excellent reputation of prioritising the voices and interests of patientsw. I will promote my research to the best of my ability but without a Spanish version, the Spanish speakers most affected by the themes of my paper don’t read English and will need to receive this in Spanish. I hope to generate much interest in the Spanish speaking Parkinson’s community.
Non-English speaking countries miss out because the entire academic process is in English. My colleague
Paulo Silva Pelicioni shared with me the following published paper he co-authored that argues for translation of research in detail.
https://www.mdpi.com/2227-9032/11/13/1932
I am in the process of organing the translation and hope all journalsa will pioneer this inclusive and world changing approach to translation of research for better translation and research reach. A change the policy ongoing could have so many impacts on health in Latin America and well beyond.
It is heartbreaking to see my friends with Parkinson’s in Latin America rapidly declining. Let’s hope this research has an impact.
With gratitude and anticipation
Christine Jeyachandran
https://handstandforparkinsons.com/2022/10/10/christines-profile/
PS.
Please get in touch if you have further interest.
I would like to prepare short patient friendly version as well.
