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All of Us Research Program Seeks Input on Research Priorities

(left) image of woman with question marks, (right) Have a research question that All of Us could address? We want to hear from you! allofusresearchpriorities.ideascale.com
December 19, 2017

Submissions Closed

We need your help!

The All of Us Research Program aims to build one of the largest, most diverse datasets of its kind for health research, with one million or more volunteers nationwide, who will sign up to share their information over time. Researchers will be able to access participants’ de-identified information for a variety of studies to learn more about the biological, behavioral, and environmental factors that influence health and disease. Their findings may lead to more individualized health care approaches in the future.

Using IdeaScale, we are asking to you to submit your ideas through a tool known as a “use case” that outlines and describes research questions that the All of Us Research Program could help answer. Click the Submit New Idea button below to be directed to IdeaScale, where you can see the ideas submitted by others or add your own idea. 

The information you provide will be used at the All of Us Research Priorities Workshop on March 21–23, 2018, to identify key research priorities and requirements (such as data types and methods) for future versions of the All of Us protocol.

To review the All of Us Research Program's Policy on Posting in IdeaScale, please click here pdf | 506 KB.

Read the current version of the All of Us protocol.

The deadline for submitting a use case for the All of Us Research Priorities Workshop is February 23, 2018.

For more details on how to submit a use case in IdeaScale, please watch this recorded video . Download a text alternative docx | 31.92 KB.

A transcript of this video can be found here pdf | 189.73 KB.

To stay up to date on program developments and news, sign up for email updates  or explore the News, Events, & Media section of the All of Us website.

For more information about the All of Us Research Priorities Workshop, use cases, and our protocol, see the video by Eric Dishman and FAQs, below.

Establishing Research Priorities Through Use Cases

Download a text alternative docx | 14.97 KB

Frequently Asked Questions (FAQs)

USE CASES

What is a use case and what are requirements?

A use case is a hypothetical study designed to answer an important research question. It includes the following requirements: 

  • The types of data needed to answer the research question
  • The methods to obtain the data types and to analyze the data
  • The specifications for using the methods (for example: is a measurement taken once a year, every month, continuously during waking hours, or at some other interval?)

The use cases reviewed in the All of Us Research Priorities Workshop will help identify common components (like survey questions, physical measurements we should take on participants, and tests) that can help All of Us accelerate precision medicine research and breakthroughs.

See the video below by All of Us Director Eric Dishman for further explanation of a use case.

Use Case Requirements for the Research Priorities Workshop

A diagram of a use case with seven segments labeled “Health Condition,” “Key Problem,” “Research Question,” “Proposed Study (to answer the research question),” “Data Types (for the proposed study),” “Methods (to obtain the data types),” and “Specifications (for using the methods).” The last three segments form a subgroup labeled “Requirements.”

Download a text alternative docx | 22.76 KB

How can I submit a use case?

You can submit a use case through the All of Us Research Priorities IdeaScale webpage .

What is the deadline for submitting a use case for the Research Priorities Workshop?

You can submit a use case on IdeaScale through February 23, 2018. All of Us may continue to collect use cases after the workshop. Check out News, Events, & Media section of the All of Us website for updates.

Do I need an account with IdeaScale to submit a use case?

Yes, and it’s easy to sign up. Visit our IdeaScale registration webpage to create an account .

Will use cases on intervention trials be accepted?

No. Use cases that require an investigator to contact participants and implement a preventive measure or intervention are outside the scope of the Research Priorities Workshop and will be considered for inclusion at a later time.

Can I submit a use case if I don’t know the answers to all of the questions?

Yes, but we encourage you to provide as much detail as possible.
 

My use case is in a fairly narrow area of science. Should I submit it?

Yes. It is quite possible that the data types in your use case will also be useful for the scientific questions described by other use cases.

I am interested in a very rare disease. Can I submit a use case for it?

Yes. All of Us will consider it. However, the research program is not designed to enable research for all types of rare diseases. Because they are uncommon in the general population, All of Us will enroll relatively small numbers of people with rare conditions.

Can I submit a use case that includes children and adolescents?

Yes. The Child Enrollment Scientific Vision Working Group of the All of Us Advisory Panel has outlined how the All of Us Research Program may be uniquely positioned to enable research through the enrollment of children. The Working Group’s report can be used as a resource to develop use cases. Read the Working Group's report pdf | 772.7 KB.

What will be done with use cases at the Research Priorities Workshop?

Workshop attendees will review submitted use cases, identify gaps (additional important research domains) and create new use cases, and identify data types common across multiple use cases.

What will be done with the use cases after the Research Priorities Workshop?

We will make all use cases available on the All of Us website as a searchable reference and as a principal database of use cases and requirements for informing future plans for All of Us. In addition, other funders (including other parts of NIH) may consider use cases that are not incorporated into the All of Us protocol for additional funding opportunities.

If I miss the deadline for submitting a use case, can I still submit one for consideration by the All of Us Research Program?

Yes. After the workshop, the program will regularly seek and review additional input for potential incorporation into the plans for All of Us. Stay informed by checking the All of Us website and signing up for email updates .

What determines whether a use case becomes part of the All of Us protocol?

We will consider many factors when selecting use cases for the All of Us protocol, including:

  1. Impact: To what extent does the use case offer the potential for a return of value for society (e.g., to maintain health, assess disease risk, detect disease, treat/cure disease, or reduce disease impact)?
     
  2. Value to Participants: To what extent is the science and potential impact meaningful and valuable to diverse participants, including those from communities traditionally underrepresented in biomedical research?
     
  3. Scope: To what extent does the use case offer broad applicability that can advance many areas of knowledge?
     
  4. Fit: To what extent is All of Us the right platform to address this research question/topic? Does this use case require the scale and diversity of people, geography, health status, and data types provided by All of Us?
     
  5. State of the Field: To what extent is the proposed research question being adequately addressed by other studies or research platforms?
     
  6. Feasibility, Validity, and Affordability: To what extent are the proposed tools, measures, and analyses feasible, valid/reliable (i.e., accurately and reliably measuring the risk factors or outcomes of interest), and affordable at scale?
     
  7. Participant Burden: To what extent will the additional elements place a significant burden or safety risk upon the participants?
     
  8. Evidence of an Ecosystem of Researchers: Are there investigators who are able to pursue the research question or topic and use the resulting data?
     
  9. All of Us Research Program Capacity and Burden: To what extent will the additional effort impede progress on current efforts, delay the initiation of other approved activities, or prevent the pursuit of approved activities? If capacity and burden will be significant, are the potential benefits sufficient to justify additional tools, measures, analyses, and studies?
     
  10. Program Balance: To what extent does the proposed research overlap with current and planned All of Us activities?
     
  11. Budget: Are sufficient funds available to fund the proposed tools, methods, measures, and analyses?
     

How will I know if my use case becomes part of the All of Us protocol?

We will not be able to notify individuals about specific use cases, but the All of Us Research Program sends out updates on activities and protocols. Stay informed by signing up for email updates or checking the All of Us website for announcements, events, funding news, and more.

Other questions? Email [email protected].

WORKSHOP DETAILS

What is the purpose of the All of Us Research Priorities Workshop?

The workshop will identify key research priorities and requirements (i.e., types of data, methods, and how those methods are used) that will allow the All of Us Research Program to advance precision medicine and maximize what we learn from our one million or more participants.
 

See "What is a use case and what are requirements?"

When and where will the Research Priorities Workshop be held?

The workshop will be held March 21–23, 2018, in Bethesda, Maryland.

Who will be at the Research Priorities Workshop?

The workshop will include a broad array of invited stakeholders, including representatives from the research and medical communities, industry and tech companies, professional societies, and patient advocacy groups. To ensure balance and representation of participants, workshop attendance is by invitation only.

Can I still contribute even if I won't be at the Research Priorities Workshop?

Yes. We encourage you to submit your ideas and to provide input on ideas submitted by others by visiting the All of Us Research Priorities IdeaScale webpage .

See "Do I need an account with IdeaScale to submit a use case?"

How will the Research Priorities Workshop be organized and run?

The workshop will consist of plenary sessions and breakout sessions. Workshop attendees will review submitted use cases, identify gaps (additional important research domains) and create new use cases, and identify data types common across multiple use cases.

What will come out of the Research Priorities Workshop?

A key goal of the workshop is to deliver a set of high-priority data types (and other requirements). After the workshop, the requirements will be reviewed, prioritized, and used to (a) adjust the current All of Us protocol to make the most meaningful impact on precision medicine and health, and (b) enable future versions of the All of Us protocol to make the All of Us research resource more useful.

Some of the research questions and requirements identified in the workshop will not be incorporated into the All of Us protocol, but they may be considered by other funders for additional opportunities.

Can I watch the Research Priorities Workshop online?

Some of it. The general assembly portions of the workshop will be available on NIH’s videocast website. It will also be archived for viewing after the workshop. We will post the workshop agenda once it's finalized and, on the day of the workshop, post a link to the videocast on this page.

A large portion of the workshop will be organized around breakout sessions, which will not be webcast, but the outcome of what happens at the workshop will be available on the All of Us website.

I have some questions about the workshop and how the information is being collected. How can I contact someone?

You can email us at [email protected].