Information for Group Participants
1. What is the Mind Body Resiliency Data Repository?
Patients in the Mind Body Resiliency Clinical Groups are asked to complete two optional surveys at their group start and group end. Information and data collected from these surveys are stored in a secure online data repository called Research Electronic Data Capture (REDCap). The purpose of this repository is to review responses from program patients to inform future mind body research and clinical program refinement to improve the care of patients in these programs!
2. How will my privacy be protected?
Data is analyzed in aggregate to inform future mind body research. Researchers and clinicians will not be able to view your identifiable information or individual answers. Under the Health Insurance Portability and Accountability Act (HIPAA), and oversight from the Mass General Brigham Institutional Review Board, we are required to protect the privacy of health information obtained for research.
3. How long does each survey take?
Each survey takes approximately 20-30 minutes to complete and may be completed in multiple sittings (e.g., you may return to a survey if left incomplete).
4. How do I access the surveys?
Upon group registration, a personalized survey link will be sent to your provided email address. You can access the survey on your smartphone, tablet, or computer. Surveys are administered in English.
5. What kind of questions should I expect to be asked?
You can expect to be asked questions related to quality of life. This includes questions aimed at measuring the following constructs: health behaviors (e.g., healthy eating, physical activity, sleep quality), resiliency, social support, emotions, and mindfulness. No answers are required; you may skip over questions if you are uncomfortable providing an answer.
6. How might I benefit from completing these surveys?
Many patients opt to complete these surveys, knowing that their answers will contribute to advances in mind body research and help to improve the quality of our programs for future participants.
Information for Researchers and Collaborators
1. What is the Mind Body Resiliency Data Repository?
The purpose of the Mind Body Resiliency Data Repository is to provide a centralized data warehouse that will make the research and clinical data collected from participants in clinical resiliency programs. Surveys are optional and collected electronically via REDCap; participants may choose to voluntarily to answer the baseline survey(T0) and/or the post-program survey (T1).
Typically, participants in these programs are individuals dealing with an ongoing stressor and/or chronic illness. Participants include adult and young adult cancer survivors, relatives of children with learning and attentional disabilities, and women with HIV. Data collected may relate to, or reflect, participant quality of life, such as data regarding engagement in health behaviors (e.g., healthy eating, physical activity, sleep quality), resiliency, social support, emotional distress, positive affect, and mindfulness.
The data repository is a resource to standardize and streamline the collection, management and analysis of this data from these clinical and research projects, thus facilitating the secondary analysis of data to answer new scientific questions.
2. Data Requests
You may request our request form for a comprehensive list of current and former measures in our survey battery. Please choose and download the appropriate form for (a) general Mind Body Resiliency Repository data requests, or (b) Cancer Survivorship repository data requests:
For general questions about data requests, please email Autumn Rasmussen (awrasmussen@mgh.harvard.edu).
To submit a proposal, please email Daniel Hall, PhD (hall@mgh.harvard.edu).
3. Background Literature Related to the Mind Body Resiliency Data Repository
4. Mind Body Resiliency Survey Battery
These voluntary surveys take approximately 30 minutes to complete and are administred to participants in our Mind Body Resiliency Groups at program start and end. Below is a list of our current survey battery, including dates of collection. Questions about any instruments listed below, or any instruments previously used in our repository, can be routed to Daniel Hall, PhD (hall@mgh.harvard.edu)
| Instrument | Construct | Validation Paper | Dates of Collection |
|---|---|---|---|
| Demographics | Patient Demographics | n/a | 9/20/16 – Present |
| Medical History | Patient Medical History | n/a | 3/17/23 – Present |
| Current Experiences Scale (CES) | Resiliency | Park, et al. (2021) | 9/20/16 – Present |
| 1-11 Distress Scale | Emotional Distress | n/a | 9/20/16 – Present |
| Measure of Current Status (MOCS) | Stress Coping | Carver, C. S. (2006) | 9/20/16 – Present |
| PANAS (Positive Affect) | Positive Emotions | Thompson, E.R. (2007) | 9/20/16 – Present |
| Penn State Worry Questionnaire (PSWQ) | Worry | Meyer, et al. (1990) | 9/20/16 – Present |
| International Physical Activity Questionnaire (IPAQ) | Physical Activity | Craig, et al. (2003) | 9/20/16 – Present |
| Insomnia Severity Index (ISI) | Recuperative Sleep | Kraepelein, et al. (2021) | 8/30/22 – Present |
| Pittsburg Sleep Quality Index (PSQI) | Recuperative Sleep | Buysse, et al. (1989) | 9/20/16 – Present |
| PSS-10 | Perceived Stress | Cohen & Williamson (1988) | 9/20/16 – Present |
| CAMS-R | Mindfulness | Feldman, et al. (2007) | 9/20/16 – Present |
| PHQ-4 | Depression and Anxiety | Lowe, et al. (2010) | 9/20/16 – Present |
| Fatigue Analogue Scale | Fatigue | n/a | 9/20/16 – Present |
| Cigna Healthy Eating | Mindful Eating | n/a | 9/20/16 – Present |
| RR Adherence | Relaxation Practice Frequency | n/a | 7/21/21 – Present |
| MOS Social Support (Emotional Support Scale) | Social Support | Sherbourne & Stewart (1991) | 9/20/16 – Present |
| TFEQ Emotional Eating Subscale | Healthy Eating | Stunkard & Messick (1985) | 7/21/21 – Present |
| RIA Single Item | Relaxation-induced Anxiety | n/a | 7/21/21 – Present |
| Health Uncertainty | Health Uncertainty | n/a | 9/20/16 – Present |
| Flourishing Measure | Flourishing | Węziak-Białowolska, et al. (2019) | 7/21/21 – Present |
| WHO-5 Wellbeing Index | Wellbeing | Topp, et al. (2015) | 7/21/21 – Present |
| Appreciation Items | Apprecation | n/a | 7/21/21 – Present |
| Religiosity and Spirituality Items | Religiosity and Spirituality | n/a | 7/21/21 – Present |
| UCLA Loneliness Scale | Loneliness | Russell, et al. (1980) | 9/20/16 – Present |
| Smoking Question | Tobacco Use | n/a | 7/21/21 – Present |
| Expectancy Questionnaire | Expected Outcomes | Devilly & Borkovec (2000) | 9/20/16 – Present |
| Program Satisfaction | Program Acceptability | n/a | 3/17/23 – Present |