MAP to MOTION FAQs
About MAP to MOTION
What is MAP to MOTION?
MAP to MOTION is not intended as a diagnostic tool nor as a replacement for medical care. Information will be returned to participants to provide perspective on their health status and how people like them are managing conditions in their bones and joints.
Who is involved in MAP to MOTION?
The Governance Committee is a multi-stakeholder group that oversees the operation and activities of MAP to MOTION to ensure it functions effectively and its integrity is maintained. Membership includes representatives from the Alberta Bone and Joint Health Institute, Alberta Health Services, the Bone and Joint Health Strategic Clinical Network, the University of Alberta, the University of Calgary, physiotherapists, physiatrists, chiropractors, orthopaedic surgeons, family physicians, and people with bone or joint condition(s).
Topic Expert Groups are set to be interdisciplinary bodies mandated by the Governance Committee to examine all issues related to the collection and use of MAP to MOTION data and to analyze and interpret data to identify patterns, causes, and effects of disease and health conditions related to the topic. As of November 2021, MAP to MOTION has established one Topic Expert Group relating to shoulder care.
Who can participate in the data collection for MAP to MOTION?
Anyone 18 years of age and over with an email address can participate in the data collection.
What is the connection to the Alberta Bone and Joint Health Institute?
The Alberta Bone and Joint Health Institute (ABJHI) is leading the establishment of MAP of MOTION. MAP to MOTION builds upon ABJHI’s over fifteen years of service to Albertans. ABJHI was established in 2004 by Dr. Cy Frank and Mr. Bud McCaig as a registered, independent non-profit to serve as a catalyst for bettering patient care by influencing clinical practice, public policy, research, and the exchange of knowledge.
Where does MAP to MOTION get information from?
Information is collected from consented participants through surveys.
The Alberta Bone and Joint Health Institute operates a robust data repository that integrates bone and joint data from the Alberta health system. First established in 2004, the Alberta Bone and Joint Health Data Repository now captures select provincial administrative databases (ex. population, vital statistics), all inpatient (hospital) musculoskeletal activity, as well as outpatient musculoskeletal activity in emergency department, urgent care, day surgery, and select ambulatory care settings. Hip and knee clinic data captures patient-reported outcome and experience measures for about 90% of hip and knee arthroplasty patients in Alberta.
As part of the participant consent process, individuals have the option of linking their survey responses and widget information with the Alberta Bone and Joint Health Data Repository.
The long-term goal of MAP to MOTION is to integrate participant responses, the Alberta Bone and Joint Health Data Repository, widgets (health and life science studies available through the MAP to MOTION dashboard), national data sets, community health data, imaging and diagnostics, Alberta Health Insurance Program data, and home care data.
Who owns the data in MAP to MOTION?
The Alberta Bone and Joint Health Institute (ABJHI) uses health and personal information a) under contract with Alberta Health Services and care providers for quality assurance and quality improvement activities, or b) with the consent of the individual.
For activities related to a) above, the authority to access health data is granted by section 27(1)(g) of the Health Information Act on behalf of a care provider. This allows the use of health information for “(…) planning, resource allocation, policy development, quality improvement, monitoring, audit, evaluation, [and] reporting.” Under the HIA, each care provider is an individual custodian of health information and the information they provide to ABJHI remains under their custody and control.
For activities related to b) above, the authority is granted from consent provided expressly or implied for the purposes described during the consent process. At any point in time, the individual can adjust or revoke their consent.
ABJHI never sells personal information to third parties.
For more information, refer to the Privacy section.
How is MAP to MOTION funded?
MAP to MOTION is being funded through philanthropy, foundation grants, and research and industry grants. Donors include people who care about and value bone and joint health, visionary philanthropists, community leaders, foundations, and corporations.
How can I support the funding of MAP to MOTION?
Donations can be accepted online through CanadaHelps or Benevity (registered under the Alberta Bone and Joint Health Institute). Alternatively, please feel free to contact the Alberta Bone and Joint Health Institute by phone 1 (866) 670-0886 or firstname.lastname@example.org for an alternate arrangement.
How long will it run?
There is currently no end date to the information collection. As long as we have your consent to participate, you will receive surveys and data will be collected. Longitudinal data (repeating collection over short or long periods of time) is crucial to advance research for bone and joint conditions.
What to Expect as a Participant
By joining as a participant, will I receive healthcare services?
What should I expect as a participant?
After you’ve registered and consented to participate, you will receive a link to the first questionnaire through your email. From this you are asked to complete the first questionnaire.
Every couple of months you will receive an email notification indicating that it is time to complete follow-up questionnaires. This notification is done automatically, and you do not need to keep track of when follow-up questionnaires are due.
You are also free to log in to your profile at any time on maptomotion.org and view your information. Over time, as more data is accumulated, the dashboard will display information related to your health status, how people like you are managing conditions in their bones and joints, and other important findings discovered through research.
How much time does it take to participate in data collection?
The surveys and widgets in MAP to MOTION are designed to be easily understood and require minimal effort from participants.
Is there a cost to join?
There is no cost to participate in MAP to MOTION. All you need is access to an email account and an internet connection.
How to Participate in Data Collection
How do I begin participating?
Log on to maptomotion.org and register. You will be asked to provide consent for the collection of your information.
I share an email address with someone. Can we both use the same email address to participate in MAP to MOTION?
What if I no longer want to participate in MAP to MOTION?
If you are registered for MAP to MOTION and wish to withdraw your consent, simply log in to your profile, navigate to the ‘About Me’ tab and update your consent accordingly.
MAP to MOTION and Privacy
MAP to MOTION Privacy Questions
What is “personal information”?
Personal information is information about an identifiable individual. This includes such things as names, provincial health numbers, postal and e-mail addresses, dates of birth, financial information, encounters with the health system, health outcomes as well as opinions, preferences, and feedback.
How can I correct my information?
You can correct some of your MAP to MOTION profile information by logging in and navigating to the About Me tab or emailing us at email@example.com.
NOTE: While we correct personal information collected directly by us, much of our health information is collected by other data systems which we do not control. We will correct your information in our data systems but cannot guarantee that those corrections will be made in the originating data system.
How can I withdraw MAP to MOTION consent?
MAP to MOTION consent is voluntary and can be withdrawn at any time by logging in and navigating to the About Me tab.
Will my MAP to MOTION survey responses be identifiable?
All information collected is strictly confidential and will not affect any care that you receive. Your name will not be attached to the information collected in MAP to MOTION. To protect your privacy, a number code will be assigned to your records that will protect your identity. Your name will never be used in any reports, analyses, or publications generated by MAP to MOTION.
Will MAP to MOTION sell my data to third parties?
No. MAP to MOTION will never sell your data to third parties.
What happens to my information if I die?
The information that you have provided will still be very valuable. It will continue to be used for research purposes in the future based on the consent you provided in your MAP to MOTION profile.
How do I find out more?
Please contact us at firstname.lastname@example.org if you have further questions on privacy.