Jackie Barreau on patient involvement in medical research

Recently, we participated in a 4 week online course through Stanford Medicine X run by Dr Larry Chu and Dr Amy Price called “Partnering with the patients and the public in medical research” [1]. It provided a nice introduction to topics like consumerism in healthcare, what can be gained by co-production with patients in health research, along with the benefits, barriers and roadblocks, and the Stanford Medicine X principles and framework for Everyone Included™ [2]. If you missed it, I am sure they will run it again, so do look out for it.

To complete the course, everyone had to submit an assignment (500 word essay, letter or blog) that shares the benefits of co-production with others.  We’ll post the content of our assignment another day. Today, we are sharing the assignment submitted by one of our community, Jackie Barreau.

Jackie Stanford Medicine X Course certificateJackie, like many in our community, inspires us with all the balls she juggles managing life, family and health issues, and being a health consumer representative. She has been a wonderful supporter (and often informant) to our work and website. Knowing Jackie also participated in the course, when it was over, we asked if she would mind us publishing her essay, sight unseen.  After all, Jackie has always shared with us thoughtful advice, and received a distinction on the course, so felt her perspective on this topic would be of interest. Jackie kindly agreed.  On receiving the essay, we were not disappointed, and are delighted to be able to make it public today (something Jackie never planned when she wrote it). We think you will see why Jackie deserved her distinction, and encourage you to share her thoughts with the political leaders her assignment sought to persuade.

Thank you for sharing this Jackie.

 

“Honourable Minister for Health – Greg Hunt

Shadow Minister for Health and Medicare – Catherine King

 

Jackie Patients are the most underutilised resource in healthcare“Patients are the most underutilized resource in healthcare” – Warner Slack

This quote focussed on Slack’s own belief of a new field of medicine assisted by computers with patients at the centre. This can also be applied to other aspects of healthcare and particularly with patients and public leading and improving medical research and the mutual benefits that both bring to the research process.

Patients and indeed the public with the right opportunities can be Investigators on research projects. Medical researchers have the opportunity to engage with patients/public through competitive research funding where part of funding criteria requires patient input. There are benefits and value patients and public can bring to medical research when living with a particular condition, for example neuroendocrine cancer.

I have witnessed how patients have been co-investigators in research studies through their unique lived experiences. Dana Lewis a diabetes advocate founded the open source artificial pancreas system movement (#OpenAPS) and went from patient to Principal Investigator (PI). This led to a grant and then project funding, where the initial grant was re-written with Dana as the PI demonstrating a co-designed collaborative effort from researchers and patient. [3]

Cancer Australia in collaboration with NMHRC runs an annual national research grant project the Priority-driven Collaborative Cancer Research Scheme or (PdCCRS) where I have been involved over the years as a consumer grant reviewer. “The scheme helps to foster consumer participation in cancer research from design to implementation. Both of these schemes indicate how investment in consumers lived experiences can strengthen grant proposals through inclusivity and opportunity. [4]

As the mother of two children affected by neuroendocrine tumours, in 2017 a white paper was developed by International Neuroendocrine Cancer Alliance (INCA) along with key stakeholders [5]. In the paper it is stated that “Patients and healthcare professionals have different priorities in terms of research. There is also a shared view that patients are not involved enough in the research design.” One question asked was ‘Are patients involved enough in research?’ Out of 388 patients/family respondents 53% cited no. Therefore, this demonstrates powerfully the importance of how a patient’s lived experiences can be used in advancing medical research, and that they do have different priorities and are keen to collaborate.

The benefits that patients and public (also referred to as consumers) bring to the medical research process include opportunities to participate beyond a passive to a more active approach like that of a principal investigator in a research project. Patients play an important role in providing their perspective in grant proposal applications and their lived experiences are fundamental in framing the right research questions. Warner Slack’s quote implies that we can advance science with the most underutilised resource in healthcare – the patient. We can build partnerships, trust, inclusivity and mutual respect. We can improve the quality of life of patients by developing innovative and novel advancements that benefit both researcher and the public and patients in medical research.

Jackie Barreau

 

Biography: 

Jackie is a health consumer passionate about embedding the consumer voice in medical research. Her interests include genomics, rare diseases, childhood cancers, neuroendocrine cancer. She is a recent graduate of the Stanford Med X online course ‘Partnering with the Public and Patients in Medical Research.’ Her aim is to promote the #patientsincluded movement through social media, and improve consumer engagement at medical conferences. ‘Patients are the most underutilized resource in healthcare’ – Warner Slack.”

 

References (websites last accessed 13Apr2019):

[1]   Chu, L. and Price, A. (2019). Partnering with Patients and the Public in Medical Research, Medicine X Stanford University School of Medicine. https://lagunita.stanford.edu/courses/course-v1:Medicine+MedxPPStrategy+Winter2019/about

[2]   Everyone Included™. http://everyoneincluded.org/

[3]   Bernstein, L. (2018, March 8). Dana Lewis, Patient as Principal Investigator. Retrieved from trial mix: https://www.science37.com/blog/dana-lewis-patient-principal-investigator/

[4]   Call for Priority-driven Collaborative Cancer Research Scheme (PdCCRS) Applications 2019. (2019). Retrieved from australian goverment: https://canceraustralia.gov.au/research-data/research/priority-driven-research/2019-pdccrs-round

[5]  Unmet needs in the global NETs patient community: an assessment of major gaps from the perspectives of patients, patient advocates and NET health professionals  (2019). Retrieved from INCA aliance : https://incalliance.org/wp-content/uploads/2018/11/2017-11-08-UnmetNeeds_in_the_global_NETs_community.pdf

 

An invitation: We welcome guest posts from anyone sharing their experience involving people in health and medical research, or being involved as a participant or patient/carer partner in research. Please reach out if you have experience you would like to share that others can benefit from, or join our Facebook Group and start connecting with other like minded health consumers and research professionals asking questions and sharing information. Medical research is #BetterTogether.

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