Challenge
0

Shock Absorber-Connect

Slack Channel Shock Absorber-Connect

Summary

As a just diagnosed LP(a) patient, I want to be connected to a patient network so that I can exchange with likewise diagnosed patients.

Description

The specific challenge I am engaging in envisions a Patient Network App for diseases that are not sufficiently well known, such as LP(a).

The objective is to obtain access on day one of diagnosis.

One feature is that Health Care Providers (HCP) are enabled to provide curated access, and introduction into the available patient support network, with tiered levels of curated information, at world level.  The Patient can access support and information depending on the needs/sophistication of the patients requirements. So just enough information and support, or detailed curated research for those who want to dive into patient advocacy for themselves. 

I still remember how shocked and numb I felt on the first day of receiving my diagnosis. My first entry point to look up and find out more information was Google - which gave me a long list of search results and I did not know which to trust or which patient groups to connect with. I wish there was a patient network for rare diseases which I could trust instead of going to the usual social media platforms. Access to the platform would be enabled by my HCP via a key of sorts so I know I can trust it right from day one of receiving my diagnosis. The HCP Health Care Practitioner (or their staff) could also provide an introduction into the network . This trusted patient network would then allow me to interact with fellow patients, share experiences , gain access and share information I can trust. I could even find out information about other HCP .

Thematic Area

1-Awareness and literacy

Patient Champion

Champion J-P. C. (10)

Team Composition would benefit from

Web , mobile app development; UX / interface expert, cloud application developer; HF /design expert

References/Resources

What is Lp(a)? https://www.heartuk.org.uk/genetic-conditions/high-lipoproteinahttps://www.amgenscience.com/features/10-things-to-know-about-lipoproteina/Where to find the European Patient Associations?https://fheurope.org/   Opens source social media app builders: e.g.https://www.oxwall.com/   https://elgg.org/https://github.com/insoshi/insoshihttp://smallcommunities.mixxt.info/

Wish list / call for resources

Elsevier publisher(from JP) backend data (build trust)

11.11.2020 19:35 ~ giovanni_nisato

Synchronized

Readme fetched from source

08.11.2020 12:00

Hackathon finished

25.10.2020 16:50

Team forming

StevenBourke has joined!

23.10.2020 12:00

Hackathon started

22.10.2020 22:14 ~ giovanni_nisato

Synchronized

Readme fetched from source

22.10.2020 12:11

Team forming

giovanni_nisato has joined!

22.10.2020 12:11

Project started

Initialized by giovanni_nisato 🎉

1. Awareness and literacy

Patients think that the general public should be more aware of the risk of acquiring specific diseases (especially cancer). The need to do regular check-ups and screenings, and the benefits of both, should be made known and pushed (e.g. PSA or Pap test screening). In addition, awareness of reference/normal values, and the meaning of these, should be communicated to physicians and patients to align knowledge and medical literacy among the patient, caregiver and HCP communities.

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