- Beyond the Stack (Mike Loukides) — tools and processes to support software developers who are as massively distributed as the code they build.
- Mary Meeker’s Internet Trends 2014 (PDF) — the changes on slide 34 are interesting: usage moving away from G+/Facebook-style omniblather creepware and towards phonebook-based chat apps.
- Introduction to Software Engineering Ethics (PDF) — amazing set of provocative questions and scenarios for software engineers about the decisions they made and consequences of their actions. From a course in ethics from SCU.
- Open Government Data Online: Impenetrable (Guardian) — Too much knowledge gets trapped in multi-page pdf files that are slow to download (especially in low-bandwidth areas), costly to print, and unavailable for computer analysis until someone manually or automatically extracts the raw data.
Bio-IT World shows what is possible and what is being accomplished
If your data consists of one million samples, but only 100 have the characteristics you’re looking for, and if each of the million samples contains 250,000 attributes, each of which is built of thousands of basic elements, you have a big data problem. This is kind of challenge faced by the 2,700 Bio-IT World attendees, who discover genetic interactions and create drugs for the rest of us.
Often they are looking for rare (orphan) diseases, or for cohorts who share a rare combination of genetic factors that require a unique treatment. The data sets get huge, particularly when the researchers start studying proteomics (the proteins active in the patients’ bodies).
So last week I took the subway downtown and crossed the two wind- and rain-whipped bridges that the city of Boston built to connect to the World Trade Center. I mingled for a day with attendees and exhibitors to find what data-related challenges they’re facing and what the latest solutions are. Here are some of the major themes I turned up.
A Knowledge Currency Exchange for health and wellness
This article was written together with Mike Kellen, Director of Technology at Sage Bionetworks, and Christine Suver, Senior Scientist at Sage Bionetworks.
The current push towards patient engagement, when clinical researchers trace the outcomes of using pharmaceuticals or other treatments, is a crucial first step towards rewiring the medical-industrial complex with the citizen at the center. For far too long, clinicians, investigators, the government, and private funders have been the key decision makers. The citizen has been at best a research “subject,”and far too often simply a resource from which data and samples can be extracted. The average participant in clinical study never receives the outcomes of the study, never has contact with those analyzing the data, never knows where her samples flow over time (witness the famous story of Henrietta Lacks), and until the past year didn’t even have access to the published research without paying a hefty rental fee.
This is changing. The recent grants by the Patient-Centered Outcomes Research Institute (PCORI) are the most visible evidence of change, but throughout the medical system one finds green shoots of direct patient engagement. Read more…
Apps reflect the public's pressing health concerns
Health care is migrating from the bricks-and-mortar doctor’s office or care clinic to the person him or herself at home and on-the-go–where people live, work, play, and pray. As people take on more do-it-yourself (DIY) approaches to everyday life–investing money on financial services websites, booking airline tickets and hotel rooms online, and securing dinner reservations via OpenTable–many also ask why they can’t have more convenient access to health care, like emailing doctors and looking into lab test results in digital personal health records.
The public clamor for digital outreach by health providers
85% of U.S. health consumers say that email, text messages, and voicemail are at least as helpful as in-person or phone conversations with health providers, according to the Healthy World study, Technology Beyond the Exam Room by TeleVox. Furthermore, one in three consumers admits to being more honest when talking about medical needs via automated voice response systems, emails, or texts than face-to-face with a health provider.
And three in ten consumers believe that receiving digital health care communications from providers—such as texts, voicemail, or email—would build trust with their providers. Half of people also say they’d feel more valued as a patient via digital health communications. When people look to engage in health with an organization, the most important enabling factors are trust and authenticity.
New report covers areas of innovation and their difficulties
O’Reilly recently released a report I wrote called The Information Technology Fix for Health: Barriers and Pathways to the Use of Information Technology for Better Health Care. Along with our book Hacking Healthcare, I hope this report helps programmers who are curious about Health IT see what they need to learn and what they in turn can contribute to the field.
Computers in health are a potentially lucrative domain, to be sure, given a health care system through which $2.8 trillion, or $8.915 per person, passes through each year in the US alone. Interest by venture capitalists ebbs and flows, but the impetus to creative technological hacking is strong, as shown by the large number of challenges run by governments, pharmaceutical companies, insurers, and others.
Some things you should consider doing include:
- Join open source projects
- Numerous projects to collect and process health data are being conducted as free software; find one that raises your heartbeat and contribute. For instance, the most respected health care system in the country, VistA from the Department of Veterans Affairs, has new leadership in OSEHRA, which is trying to create a community of vendors and volunteers. You don’t need to understand the oddities of the MUMPS language on which VistA is based to contribute, although I believe some knowledge of the underlying database would be useful. But there are plenty of other projects too, such as the OpenMRS electronic record system and the projects that cooperate under the aegis of Open Health Tools.