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A Directional Survey Assessing Patient Experiences With Osteoporosis Diagnosis

Identified challenges around and barriers to diagnosis (grounded in patient experiences and perspectives) to uncover opportunity areas.

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How does your research relate to the Challenge?

By identifying challenges around and barriers to diagnosis (grounded in patient experiences and perspectives), we can hone in on 1) the context of the problem and 2) identify touch points where there are potential opportunities for design interventions/solutions.

Tell us about your research:

For my research, I designed a "directional" survey targeted to users who have been diagnosed with osteoporosis (n=6 due to limited resources and rapid nature of the research). Questions both tested a few hypotheses around barriers to diagnosis and explored the conditions of the diagnosis experience itself. I have included a few charts from the survey and a "top line" of the results below: - The majority indicates that they were slightly to not at all familiar with osteoporosis before their diagnosis - Some users in the sample feel that the condition goes untreated because 1) the symptoms may be seen as too small to note 2) the symptoms may feel similar to other conditions' symptoms 3) they may not know to get bone density tests. A few note that once they mentioned the symptoms, their doctors prompted bone density tests. - Many were diagnosed with osteoporosis after a bone density tests/screening, either prompted by broken bones, routine check-up panels, or the mention of potential symptoms - Underlying assumption/indication: everyone from the sample has the means to get routine screenings or access to a healthcare provider by nature that they were all diagnosed - "I would never have known I had osteoporosis if I hadn't mentioned a small symptom to my doctor who then ordered a bone density test” - "I treat my osteoporosis and so do my sisters, but a lot of people don't know when they should get a bone density test, so osteoporosis might go untreated.”

What is an insight, question, or provocation that might inspire others during this challenge?

- Patients from the sample indicate that they tend to be unfamiliar with osteoporosis as a condition --> potential lack of exposure to resources and conversations with their doctors about osteoporosis - how might we educate older adults about the possibility of osteoporosis and equip them with a toolkit to spark discussions about it? - Some indicate that they were asymptomatic (did not know to be tested) or that they thought certain symptoms were attributed to other conditions --> how might we educate older adults about the possibility of osteoporosis and equip them with a toolkit to spark discussions about it? - They indicate that once diagnosed, they were familiar with the condition and motivated to get treatment/stick to it. A consideration: - While most diagnosed users of the sample were able to access healthcare providers and testing, a large segment of the population does not have access to this care --> how might we educate older adults about the possibility of osteoporosis and equip them with a toolkit to spark discussions about it, especially if they do not have the means to access healthcare providers? I'd want to do further research on these results to validate that knowledge/ID of the condition is a bigger barrier than lack of motivation to get treatment, since most (of the albeit n=6 for the purpose of this exercise) indicate they were motivated to get treatment after they were diagnosed/more familiar with the condition.

Tell us about yourself

I work in research and have a background in Cultural Anthropology, so I'm interested in a variety of topics.

If you participated in a Research Event, tell us which Chapter or city you came from:

N/A - I recently opened an account and participated independently, but I'd like to attend the NYC chapter event.

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Photo of Manisha Laroia

Thanks David Lieber for sharing your insights in the Research Phase! What ideas did your findings spark? Now is the time to share them in the Ideas Phase!

As you work on your submission, be sure to check out the following resources:
1] Challenge Personas and Journey Map: These stories provide a window into the lives of older adults and the health system, for which you are designing
2] Resources Page: This collection of resources spans osteoporosis, designing for health, and the Challenge process to support you in crafting your submission.
3] Evaluation Criteria: This is the criteria against which we will be evaluating your ideas. We highly suggest revisiting this throughout the Challenge process.
Here is the page:
https://www.openideo.com/content/healthy-bones-additional-resources

Submissions must be published on the OpenIDEO platform by July 3rd at 5 p.m. PST - but we HIGHLY encourage you to upload the first draft of your submission sooner rather than later, so our community team has time to provide feedback on your idea and because it’s just more fun.

Let me know if you have any questions. We'll also be hosting Office Hours on June 5th 8:30 AM PST. Add it to your calendar or save this link to join. [https://ideo.zoom.us/j/680604401]

See you in the Ideas Phase,
Manisha
OpenIDEO Community Fellow

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