Sharing of data sets is recommended by such organizations as the National Science Foundation, the National Institutes of Health, and the Center for Disease Control. There are substantial benefits to the development of shared data sets. These data sets promote conceptual agreement and standardized measurement of concepts. With the challenges and costs associated with conducting research today, sharing of data may also result in reduced research costs by avoiding duplication of data collection efforts, and maximizing the work of researchers across multiple sites. These data sets also can facilitate establishment of population norms and comparison of key concepts across population. Most importantly, shared data sets are important tools for advancing nursing science and for facilitation of translation of research findings into practice. The Oncology Nursing Society is well positioned to consider strategies to facilitate data sharing (research and clinical data) to further the science in oncology nursing. ONS is a highly respected specialty organization known for its support of quality research in the care of patients with cancer.

Multiple serious challenges are present to the development and maintenance of a shared data set. Finding agreement among experts about concepts and how they should be evaluated can be a daunting process. Development and maintenance of the infrastructure to support a shared data set is costly not only in terms of dollars and cents but also in manpower. Systems must be established to enable access to data, and substantial ethical issues must be addressed to ensure that human subject concerns are considered.

Two successive ONS project teams have been working through these challenges. The first project team, the ONS Multi-Site Research Strategic Plan Data Sharing Project Team in 2006 identified the initial recommendations to begin the steps involved in developing a data sharing and common data elements structure. The work of that project team formed the basis for the work of a current project team, the Core Data Set Project Team (2007). This project team is charged with proposing a core data set of common data elements for use in clinical practice and research. This project team is busy developing plans for the selection and measurement of core data elements, education and training, identifying the best and most cost-effective strategies for incorporating oncology nursing core data elements into data repositories (incorporation into existing data repositories or creation of a unique data repository), data safety and monitoring, and dissemination and translation into practice. As a member of the Core Data Set Project Team, I will update you on the progress we make as this project unfolds. We look forward to the outcomes of this important project team and the benefits of this new direction for facilitation of evidence-based practice in oncology nursing.

I hope that you are all finding some time for relaxation and rejuvenation this summer. Research activities keep moving along here at ONS with the help of all of you!

The six new ONS PEP (Putting Evidence into Practice) cards (caregiver strain and burden, constipation, depression, dyspnea, mucositis, and peripheral neuropathy) were “hot items” at the 2007 ONS 32nd Annual Congress in Las Vegas, NV. Summaries and critiques of all of the research articles cited on the cards are available on the ONS Web site (http://ons.org/outcomes). The Web site information and cards are excellent resources for practicing nurses and students as they learn to apply the best evidence for interventions for oncology nursing–sensitive patient outcomes. Thank you to the many advanced practice nurses, staff nurses and the researchers who worked on this exciting and comprehensive project. Two additional cards (pain and prevention of bleeding) will be distributed at Institutes of Learning November 9-11, 2007, in Chicago, IL. The teams working on the 2008 topics (anorexia, anxiety, diarrhea, and lymphedema) have started their work so that these ONS PEP cards can be distributed at Congress in 2008. The success of this project has exceeded everyone’s expectations. We are now working to develop implementation and evaluation plans along with continued dissemination of the ONS PEP resources. The cards can be ordered through the ONS Web site.

Carol Ferrans, PhD, RN, FAAN, is leading the new ONS Multisite Research Marketing Team, which will be meeting later this summer in Pittsburgh, PA. The charge of this project team is to increase recognition of nurse scientist contributions in the scientific and lay communities. You will be hearing more about their work in the future.

You will also be hearing more soon from the ONS Core Data Set Project Team led by Diane Otte, MS, RN, OCN^®. The process of identifying and developing plans for use of core data elements for oncology nursing practice and research is complex and multifaceted!

I am pleased to introduce two new ONS Research Team staff members, Julie Hunt, PhD (.75 position telecommuter from Seattle, WA) and Heather Blair, MS, RN (full-time in the Pittsburgh, PA, office). Julie’s doctorate is in health psychology, and she has worked for more than 15 years at the Women’s Health Initiative Coordinating Center at the Fred Hutchinson Cancer Research Center in Seattle. She has expertise in the areas of patient recruitment, retention, and education; survey development; Web site development; and multisite data collection. Heather has completed several doctoral courses at the University of Pittsburgh School of Nursing and worked as a clinical research coordinator at the Melanoma Center at the University of Pittsburgh Cancer Institute. Linda Eaton, MN, RN, AOCN^®, continues to work full-time telecommuting from Seattle, and Linda Lillington, DNSc, RN has decreased her time to half-time telecommuting from Los Angeles, CA. As you know, Jenny Brown and Kelly Egnotovich provide exceptional administrative support to the ONS Research Team. Both Julie and Heather bring new perspectives to the work of research and evidence-based practice at ONS. Please contact any of us with questions, ideas, and suggestions. I am excited to have all of the research associate positions filled so that we can continue to provide facilitation and support of ONS research and evidence-based practice projects throughout ONS.

ONS Foundation Hosts International Cancer Research Partnership Meeting

The International Cancer Research Partnership (ICRP) is a group of nine cancer funding organizations from the United States, United Kingdom, and Canada. This group initially came together in 2000 to consider and agree on a common system of coding research grants, the Common Scientific Outline (CSO). A database was developed to share information on the types of research funded by the ICRP organizations. This database, with details on the cancer research funded by the partners, is posted on the International Cancer Research Portfolio Web site at www.cancerportfolio.org.

Participating international cancer research partners include the American Cancer Society, California Breast Cancer Research Program, Canadian Cancer Research Alliance, Congressionally Directed Medical Research Programs, National Cancer Institute, National Cancer Research Institute, Oncology Nursing Society Foundation, Prostate Cancer Foundation, and the Susan G. Komen Breast Cancer Foundation.

Participate in National Committees

Representing nursing on a national committee, providing testimony in policy hearings, or serving on national projects are tremendous opportunities for advocacy. I have found these experiences highly informative to advance my own understanding and excellent opportunities for advancing the profession of nursing.

Watch for the Implementation of the Patient-Reported Outcomes Measurement Information System

Laurel Radwin, PhD, RN
Chelmsford, MA
lradwin@partners.org

Gail Mallory, PhD, RN, CNAA
Pittsburgh, PA
gmallory@ons.org

We attended a session at the Academy Health Annual 2007 Research Meeting on June 3, 2007, about PROMIS (Patient-Reported Outcomes Measurement Information System). We believe that PROMIS provides a unique opportunity for measuring outcomes of oncology nursing care. Several of you attended sessions held at National Institutes of Health in September 2006. It now sounds like many of the resources of PROMIS may be available soon.

This NIH initiative is a component of the NIH Roadmap and focuses on patients’ self-reported physical, mental, and social health, including functional status (independent activities of daily living), symptoms (pain, fatigue, sleep/wake function, sexual function), emotional distress (anxiety, depression, anger/aggression, substance abuse, negative impacts of illness), and others. Steven Clauser, PhD, of the National Cancer Institute, reported that the goal is to provide a publicly available Internet-based system that will do the following.

• Create item banks for precise, valid, and efficient health status assessment using computer-adaptive testing or short forms.
• Collect and analyze patient responses.
• Provide health status reports to users.
• Support disease-specific research applications.

Many delivery platforms will be used for assessments, including telephone interview, self-administered, interactive voice recognition, Internet administered, hand-held devices, TV, and personal interview. Patient-Reported Outcomes (PROs) are increasingly being recognized by researchers and policy makers as an important component of quality patient care.

Take Advantage of This Leadership Opportunity

Jenny Shinsky
Pittsburgh, PA
jshinsky@ons.org

The SIGs Virtual Community was developed to improve
communication among SIG leaders and members. Visiting your SIG’s Web page on the Virtual Community keeps you updated about SIG activities by providing you with important information and resources.

• “Relationships Among Pain, Fatigue, Insomnia, and Gender in Persons With Lung Cancer” by Amy J. Hoffman, PhD, RN, Barbara A. Given, PhD, RN, FAAN, Alexander von Eye, PhD, Audrey G. Gift, PhD, RN, FAAN, and Charles W. Given, PhD (ONF, Vol. 34, pp. 785–792)

Membership Information

• Network with colleagues in an identified subspecialty area around the country.
• Contribute articles for your SIG's newsletter.
• Participate in discussions with other SIG members.
• Contribute to the future path of the SIG.
• Share your expertise.
• Support and/or mentor a colleague.
• Receive information about the latest advancements in treatments, clinical trials, etc.
• Participate in ONS leadership by running for SIG coordinator-elect or join SIG work groups.
• Acquire information with a click of a mouse at http://sig.vc.ons.org, including
• Educational opportunities for your subspecialty
• Education material on practice
• Calls to action
• News impacting or affecting your specific SIG
• Newsletters
• Communiqués
• Meeting minutes.

Join a Virtual Community
A great way to stay connected to your SIG is to join its Virtual Community. It's easy to do so. All you will need to do is

• Log on to the ONS Web site (www.ons.org).
• Select "Membership" from the tabs above.
• Then, click on "Chapters, SIGs & Virtual Communities."
• Scroll down to "Special Interest Groups (SIG) Virtual Community" and click.
• Now, select "Find a SIG."
• Locate and click on the name of your SIG from the list of all ONS SIGs displayed.
• Once the front page of your SIG's Virtual Community appears on screen, select "New User" from the top left. (This allows you to create log-in credentials.)
• Type the required information into the text fields as prompted.
• Click "Join Group" (at the bottom right of the text fields) when done.

Special Notices

• If you already have log-in credentials generated from the ONS Web site, use this information instead of attempting to generate new information.
• If you created log-in credentials for the ONS Web site and wish to have different log-in information, you will not be able to use the same e-mail address to generate your new credentials. Instead, use an alternate e-mail address.

Subscribe to Your SIG's Virtual Community Discussion Forum
All members are encouraged to participate in their SIG's discussion forum. This area affords the opportunity for exchange of information between members and nonmembers on topics specific to all oncology subspecialties. Once you have your log-in credentials, you are ready to subscribe to your SIG's Virtual Community discussion forum. To do so,

• Select "Log In," located next to "New User," and enter your information.
• Next, click on the "Discussion" tab on the top right of the title bar.
• Now, select "Featured Discussion" from the left drop-down menu.
• Locate and select "Subscribe to Discussion" inside the "Featured Discussion" section.
• Go to "Subscription Options" and select "Options."
• When you have selected and entered all required criteria, you will receive a confirmation message.
• Click "Finish."
• You are now ready to begin participating in your SIG's discussion forum.

• First, log in. (This allows others to identify you and enables you to receive notification [via e-mail] each time a response or new topic is posted.)
• Click on "Discussion" from the top title bar.
• Select "Featured Discussion" from the left drop-down menu.
• Click on any posted topic to view contents and post responses.

Sign Up to Receive Your SIG's Virtual Community Announcements
As an added feature, members also are able to register to receive their SIG's announcements by e-mail.

• From your SIG's Virtual Community page, locate the "Sign Up Here to Receive Your SIG's Announcements" section. This appears above the posted announcements section.
• Select the "Click Here" feature, which will take you to a link to subscribe.
• Once the "For Announcement Subscription Only" page appears on screen, select how you wish to receive your announcements.
• As individual e-mails each time a new announcement is posted
• One e-mail per day comprised of all new daily announcements posted
• Opt-out, indicating that you will frequently browse your SIG's Virtual Community page for new postings
• Enter your e-mail address.
• Click on "Next Page."
• Because you have already joined your SIG's Virtual Community, you will receive a security prompt with your registered user name already listed. Enter your password at this prompt and click "Finish."
• This will bring up a listing of your SIG's posted announcements. Click on "My SIG's Page" to view all postings in their entirety or to conclude the registration process and begin browsing.

Advanced Nursing Research SIG Officers

To view past newsletters, click here.

ONS Membership/Leadership Team Contact Information

Angie Stengel, MS, CAE, Director of Membership/Leadership
astengel@ons.org
412-859-6244

Diane Scheuring, MBA, CMP, Manager of Member Services
dscheuring@ons.org
412-859-6256

Carol DeMarco, Membership/Leadership Administrative Assistant
cdemarco@ons.org
412-859-6230

The Oncology Nursing Society (ONS) does not assume responsibility for the opinions expressed and information provided by authors or by Special Interest Groups (SIGs). Acceptance of advertising or corporate support does not indicate or imply endorsement of the company or its products by ONS or the SIG. Web sites listed in the SIG newsletters are provided for information only. Hosts are responsible for their own content and availability.

Oncology Nursing Society
125 Enterprise Dr.
Pittsburgh, PA 15275-1214
866-257-4ONS
412-859-6100
www.ons.org