Alpha: [Vocatus.io] (http://vocatus.io)

BLUF:

Vocatus is a simple tool that makes it easier for patients and their proxy to request medical records, capture whether that request was successful, and provide a feedback loop to healthcare institutions, the public, and government agencies like the [Office for Civil Rights] (http://www.hhs.gov/ocr/office/). Our first user group are the patient "tracers" participating in Data Independence Day.

Background:

It is a challenge for individual patients and their families to serve as advocates at the healthcare system level, but their voice is crucial to driving user centered health and human services. In particular there is a groundswell of patient advocacy around access to personal health data, especially in digital formats. Despite a legal right to access and get a copy of ones personal medical record, there are mounting stories of patients having [significant challenges] (http://www.nytimes.com/2014/11/09/sunday-review/medical-records-top-secret.html?_r=0) accessing their data, and even coming to harm when referrals are delayed or allergies are not known during emergences. A recent [proposed weakening] (https://www.federalregister.gov/articles/2015/04/15/2015-08514/medicare-and-medicaid-programs-electronic-health-record-incentive-program-modifications-to#p-219) of patient data access incentives in the Meaningful Use federal incentive program for electronic health records has many patients and patient advocates concerned that the situation is about to get even worse.

Our hypothesis is that by bringing high volume, data-driven public and federal agency attention to the gaps between policy intent, consumer demand, and the on the ground reality of trying to access medical records, we can convince healthcare delivery system leaders and their legal teams to make this a priority.

Our initial goal is to make it easy for patients to submit a standard legal request for their medical records, and then capture whether their healthcare provider appropriately complies with that request under HIPAA through a basic two-pronged follow up strategy. By collecting this information we can all learn more about the institutions where patient data access is working and where it is not, bring data driven public attention to this issue through the media, and amplify patient voices by joining them together when they report serious violations of their rights to the Office for Civil Rights.

MVP Goal:

Show the prototype works for activated patients, answer some of the key questions about the prototype (described below), and develop a meaningful way of tracking the results of a request.

MVP User: Activated patient participating in 2015 Data Independence Day, a person using this records request as point of advocacy

National Patient Day team wants to use MVP to learn: what we should ask for (record content), standard for the record (content standard), transport method, how best to follow up with the patient for the outcome of that request, and any collateral on the landing page that may be helpful

Post MVP-Goal:

Get C-Suite leaders and their lawyers to make fixing this problem a priority. Share select complaints, in collaboration with the patient, to OCR.

Theory of change for post MVP goal:

Educating the C-suit will cause behavior change, with no need to go public. (some contention about this theory, needs to be tested). C-Suites care about public perception, so we will use the media to bring public attention to good and bad actors in a data driven way The C Suite and their lawyers care about being fined by OCR, both due to the cost and public perception, so we will submit a large-volume complaint to OCR. A publicly announced, large volume, patient complaint will encourage OCR to prioritize following up on these complaints.

[MVP Functional Description] (codeforamerica#6)

While out of scope for the MVP, we are interested in developing a public dashboard for patient data access in the spirit of the [US City Open Data Census] (http://us-city.census.okfn.org/) which could be shared back with healthcare organizations and/or the public, and a more automated way of populating patient compliants for the Office of Civil Rights.