Tell us a little bit about yourself, your consulting, and your non-profit.
I’m Dr. April Moreno and I am PhD trained in Health Promotion Sciences and Information Systems and Technology from the Claremont Colleges in Los Angeles. In 2015, I became a Certified Associate in Healthcare Information and Management Systems (CAHIMS) and worked in chronic disease surveillance design with the CDC while finishing my dissertation on Health Informatics and Geo-Analytics for Improving Health Outcomes.
After graduating with the PhD in 2017, I completed a National Library of Medicine postdoctoral fellowship at UCSD Biomedical Informatics where I worked in autoimmune disease research and patient experience with patient portals, registries, and online community platforms.
I am now a freelance consultant in public health and IT, consulting in strategy, program design, and user experience research. I have worked with organizations such as Western University of Health Sciences, YWCA, New York Public Health, and USC, in addition to local community clinics in Southern California.
In addition to my consulting work, this year I started a nonprofit organization dedicated to autoimmune health equity research, called the Autoimmune Community Institute.
As a consultant to public health and IT, where do you see the biggest weakness in what’s being done today?
I have seen challenges with organizations being able to connect with patient communities. Too much research is being done and too many technologies are created – without the voices of diverse patient communities.
What are the top 3 things healthcare organizations and health IT companies can do to improve the patient experience?
There is a phrase out that is commonly used and it is “not about us without us”. Organizations can increase their focus on this phrase though strategies such as community based participatory research, or in developing promotores for community health education – as long as the methods being taught are culturally competent and have included the feedback and experiences of patients.
In designing and implementing UX or PX strategy, organizations can admit what they know and don’t know. Be willing to incorporate and even prioritize diversity in focus groups and user interviews.
Be willing to invest in consulting, technical assistance, and information from professionals with expertise in understanding the intangibles of technology development, cultural competency, diversity, and inclusion.
Having worked with a number of online patient community platforms, what do you see as their strengths and weaknesses? How would you like to see them evolve to better help patients?
The strengths with online patient communities are that they are open to making space and sharing the experiences of patients, and have helped patients connect to others who have the same rare disease as them for example. The weakness is that there is a huge lack of diversity in these communities due to many factors. It may be as well the format and design itself of these platforms is not what diverse communities are seeking. One important way to find out is to include diverse communities in the design of these platforms.
What are some examples of ways health IT can help the Autoimmunue community have a better patient experience? What would you share with a health IT company to help them better understand autoimmune patients’ needs?
Health IT has a bright future with the Autoimmune Community Institute! We are working on various social enterprises over the coming years, and one of them involves diverse patient insights for health technologies. We will be available to design and test existing apps, patient networks, registries and portals with diverse autoimmune communities over the coming months and years.
I would share that language access is an important aspect of what diverse patients need. If we can design a tool that addresses at least the threshold languages of a geographic region, we will be more enabled to find new insights in what patients need to improve their health, care coordination, and quality of life.
How can the health IT community help you and the Autoimmune Community Institute?
I encourage you reach out if you are seeking user/patient experience insights and inclusion for Health IT technical support, cultivating new company cultures, increasing employee morale, strategic facilitation, or UX research strategy for your healthcare IT enterprise. I am accepting consulting contracts for 2021 at www.aprilmorenoconsulting.com and firstname.lastname@example.org
Likewise, if your business is seeking a nonprofit organization to support in 2021, please consider the vast needs in autoimmune health equity and support our research, advocacy and community services work with the Autoimmune Community Institute: www.acicommunity.org
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