Enabling large-scale well being research for the analysis group – Google Analysis Weblog

As shopper applied sciences like fitness trackers and mobile phones turn into extra broadly used for health-related information assortment, so does the chance to leverage these information pathways to check and advance our understanding of medical situations. We’ve previously touched upon how our work explores the usage of this know-how inside the context of power illnesses, specifically a number of sclerosis (MS). This effort leverages the FDA MyStudies platform, an open-source platform used to create medical research apps, that makes it simpler for anybody to run their very own research and gather good high quality healthcare information, in a trusted and protected approach.

At this time, we describe the setup that we developed by increasing the FDA MyStudies platform and exhibit how it may be used to arrange a digital well being research. We additionally current our exploratory analysis research created by way of this platform, referred to as MS Indicators, which consists of a symptom monitoring app for MS sufferers. The aim for this app is twofold: 1) to make sure that the enhancements to the FDA MyStudies platform made for a extra streamlined research creation expertise; and a pair of) to grasp how new information assortment mechanisms can be utilized to revolutionize sufferers’ power illness administration and monitoring. We’ve open sourced our extension to the FDA MyStudies platform beneath the Apache 2.0 license to supply a useful resource for the group to construct their very own research.

Extending the FDA MyStudies platform

The unique FDA MyStudies platform allowed individuals to configure their very own research apps, handle members, and create separate iOS and Android apps. To simplify the research creation course of and guarantee elevated research engagement, we made numerous accessibility modifications. A few of the principal enhancements embody: cross-platform (iOS and Android) app technology by way of the usage of Flutter, an open supply framework by Google for constructing multi-platform purposes from a single codebase; a simplified setup, in order that customers can prototype their research rapidly (beneath a day normally); and, most significantly, an emphasis on accessibility in order that various affected person’s voices are heard. The accessibility enhancements embody modifications to the underlying options of the platform and to the actual research design of the MS Indicators research app.

Multi-platform assist with speedy prototyping

We selected the usage of Flutter as it could be a single level that may generate each iOS and Android apps in a single go, lowering the work required to assist a number of platforms. Flutter additionally offers hot-reloading, which permits builders to construct & preview options rapidly. The design-system within the app takes benefit of this function to supply a central level from which the branding & theme of the app will be modified to match the tone of a brand new research and previewed immediately. The demo setting within the app additionally makes use of this function to permit builders to mock and preview questionnaires domestically on their machines. In our expertise this has been an enormous time-saver in A/B testing the UX and the format and wording of questions stay with clinicians.

System accessibility enhancements

To enhance the accessibility of the platform for extra customers, we made a number of usability enhancements:

1. Gentle & darkish theme assist
2. Daring textual content & variable font-sizes
3. Excessive-contrast mode
4. Enhancing consumer consciousness of accessibility settings

Prolonged publicity to brilliant gentle themes can pressure the eyes, so supporting darkish theme options was essential to make it simpler to make use of the research app continuously. Some small or gentle text-elements are illegible to customers with imaginative and prescient impairments, so we added 1) bold-text and assist for bigger font-sizes and a pair of) high-contrast color-schemes. To make sure that accessibility settings are straightforward to search out, we positioned an introductory one-time display that was introduced throughout the app’s first launch, which might straight take customers to their system accessibility settings.

Examine accessibility enhancements

To make the research itself simpler to work together with and cut back cognitive overload, we made the next modifications:

1. Clarified the onboarding course of
2. Improved design for questionnaires

First, we clarified the on-boarding course of by presenting customers with a listing of required steps once they first open the app with a purpose to cut back confusion and participant drop-off.

The unique questionnaire design within the app introduced every query in a card format, which makes use of a part of the display for shadows and depth results of the cardboard. In lots of conditions, it is a nice aesthetic, however in apps the place accessibility is precedence, these visible components limit the house obtainable on the display. Thus, when extra accessible, bigger font-sizes are used there are extra frequent phrase breaks, which reduces readability. We mounted this just by eradicating the cardboard design components and as a substitute utilizing all the display, permitting for higher visuals with bigger font-sizes.

The MS Indicators prototype research

To check the usability of those modifications, we used our redesigned platform to create a prototype research app referred to as MS Indicators, which makes use of surveys to assemble details about a participant’s MS-related signs.

MS Indicators app screenshots.

MS Research app design

As a primary step, earlier than getting into any research data, members are requested to finish an eligibility and research comprehension questionnaire to make sure that they’ve learn by way of the possibly prolonged phrases of research participation. This would possibly embody, for instance, questions like “In what nation is the research obtainable?” or “Are you able to withdraw from the research?” A bit like that is frequent in most well being research, and it tends to be the primary drop-off level for members.

To attenuate research drop-off at this early stage, we stored the eligibility take a look at transient and mirrored appropriate solutions for the comprehension take a look at again to the members. This helps decrease the variety of instances a consumer might must undergo the preliminary eligibility questionnaire and ensures that the essential points of the research protocol are made clear to them.

After profitable enrollment, members are taken to the principle app view, which consists of three pages:

• Actions:
  This web page lists the questionnaires obtainable to the participant and is the place nearly all of their time is spent. The questionnaires range in frequency — some are one-time surveys created to assemble medical historical past, whereas others are repeated every day, weekly or month-to-month, relying on the symptom or space they’re exploring. For the one-time survey we offer a counter above every query to sign to customers how far they’ve come and what number of questions are left, much like the questionnaire throughout the eligibility and comprehension step.
• Dashboard:
  To make sure that members get one thing again in return for the knowledge they enter throughout a research, the Dashboard space presents a abstract of their responses in graph or pie chart kind. Individuals may doubtlessly present this information to their care supplier as a abstract of their situation over the past 6 months, an enchancment over the standard pen and paper strategies that many make use of at the moment.
• Assets:
  A set of helpful hyperlinks, assist articles and customary questions associated to MS.

Questionnaire design

Since needing to continuously enter information can result in cognitive overload, participant drop off, and dangerous information high quality, we decreased the burden in two methods:

1. We break down massive questionnaires into smaller ones, leading to 6 every day surveys, containing 3–5 questions every, the place every query is a number of alternative and associated to a single symptom. This manner we cowl a complete of 20 main signs, and current them in the same technique to how a clinician would ask these questions in an in-clinic setting.
2. We guarantee beforehand entered data is available within the app, together with the time of the entry.

In designing the survey content material, we collaborated intently with skilled clinicians and researchers to finalize the wording and format. Whereas research on this discipline sometimes use the Likert scale to assemble symptom data, we outlined a extra intuitive verbose scale to supply higher expertise for members monitoring their illness and the clinicians or researchers viewing the illness historical past. For instance, within the case of imaginative and prescient points, quite than asking members to fee their signs on a scale from 1 to 10, we as a substitute current a a number of alternative query the place we element frequent imaginative and prescient issues that they could be experiencing.

This verbose scale helps sufferers observe their signs extra precisely by together with context that helps them extra clearly outline their signs. This method additionally permits researchers to reply questions that transcend symptom correlation. For instance, for imaginative and prescient points, information collected utilizing the verbose scale would divulge to researchers whether or not nystagmus is extra outstanding in sufferers with MS in comparison with double imaginative and prescient.

Aspect-by-side comparability with a Likert scale on the left, and a Verbose scale on the precise.

Specializing in accessibility

Cell-based research can typically current further challenges for members with power situations: the textual content will be laborious to learn, the colour distinction may make it tough to see sure bits of knowledge, or it might be difficult to scroll by way of pages. This may occasionally end in participant drop off, which, in flip, may yield a biased dataset if the people who find themselves experiencing extra superior types of a illness are unable to supply information.

With a view to forestall such points, we embody the next accessibility options:

• All through, we make use of colour blind accessible colour schemes. This consists of bettering the distinction between essential textual content and essential further data, which could in any other case be introduced in a smaller font and a light textual content colour.
• We decreased the quantity of motion required to entry essential controls by inserting all buttons near the underside of the web page and making certain that pop-ups are controllable from the underside a part of the display.

To check the accessibility of MS Indicators, we collaborated with the National MS Society to recruit members for a consumer expertise research. For this, an invitation was despatched out by the Society to their members, and 9 respondents have been requested to check out the assorted app flows. The bulk indicated that they want a greater approach than their present methodology to trace their symptom information, that they thought of MS Indicators to be a novel and useful software that may improve the accuracy of their symptom monitoring, and that they’d need to share the dashboard view with their healthcare suppliers.

Subsequent steps

We need to encourage everybody to utilize the open source platform to begin establishing and working their very own research. We’re engaged on making a set of ordinary research templates, which might incorporate what we realized from above, and we hope to launch these quickly. For any points, feedback or questions please try our resource page.