Survivor Care Plan project team June 26 meeting summary

Attended: Paula Colwell, Etta Erickson, Jody Jackson, Karen Karls, Kathleen McGovern, Mary Jo Nissen, Anna Ourada, Ciara Stigen, Marge Watry

By phone: Freda Carlson, Melissa Panszi Riebe, Patti Swanson, Lindy Yokanovich

Time: June 26, 2008, 1:00-2:30pm

Location: Twin Cities Hope Lodge, 2500 University Ave SE, Minneapolis

Etta Erickson & Jody Jackson have graciously offered to Co-Chair our group.

Anna Ourada & Liz Moe gave Etta Erickson’s Survivor Care Plan presentation at the Rural Health

Conference on June 24 in Duluth. The message that a SCP could be a helpful tool for survivors living in rural areas along with rural clinics and hospitals was well received.

Jody Jackson attended a Survivorship Research Conference in Atlanta June 17-20. She attended a conference session that encouraged researchers to take advantage of opportunities to collaborate with their state's comprehensive cancer control plan, as we are doing. The speaker also mentioned how MN was one of seven CCC plans that have a focus area on survivorship.  She took this as boding well for our grant proposal (either having success with LAF or some other funding avenue) and it reiterated to her how special our cancer control plan and the Alliance was in being on the forefront of survivorship efforts.

The Lance Armstrong Foundation Community Program Education for Health Care Professionals grant application was submitted June 20. The Executive Summary was provided to all meeting participants and is available to any others who are interested by request. We will find out if we are funded September 29, 2008. We will create a SCP regardless of funding award from LAF; the LAF grant would allow us to do more but we can scale it down or look for other funding options if we are not funded.

Survivor Care Plan discussion

Basic Tenets of our SCP

·         Our goal is to create a non-proprietary Survivor Care Plan that any survivor or hospital system can use

·         Our SCP is meant to facilitate communication as well as support, empower & inform survivors to improve their quality of life; it would serve as a security blanket, making the patient feel better through a scary situation

·         The tool will also function as an educational exchange between oncology and primary care providers

·         Our SCP must be dynamic, able to be added to and updated

·         It is not meant to duplicate medical charts

·         It should be an assessment of issues universal to cancer survivors but yet could be personalized to the individual

·         The tool would be a place for documentation of questions and to list possible helpful resources

·         We envision two documents: the first summarizes as you go through treatment, the second recommends longer-term follow up and addresses practical and psychosocial issues

Review/Consider Further

·         The IOM report provides a care plan template in one of their 3 books (Anna to send)

·         We should look at mental health documents like IEPs as a guide

·         To determine what providers and survivors think are essential components, we could list possible elements on a form and ask those who review it to check boxes they would like to see incorporated

Outstanding Questions (challenging issues yet to be resolved)

·         What is the critical time to provide the survivor with this information?  Immediately after diagnosis? after treatment is finished?

·         Who is responsible for the document? The patient or the oncologist?

·         What might be different in a SCP for an early stage cancer vs. a later stage cancer?

·         Should it solely list information for a first cancer experience or include information on additional diagnoses & treatments?

Announcements

Health Care Providers are invited to a Hope Lodge Picnic & Open House to visit with patients, tour their free home-away-from home, visit with other Twin Cities physicians, nurses, social workers and healthcare providers for a picnic and entertainment. Wednesday, August 20, 4:00-7:00pm, 2500 University Ave SE, Minneapolis, RSVP to Mary or Joan at 612-379-6352 or mary.wiles@cancer.org.

Next steps:

·         Look at the SCP grid and email responses to Anna at anna.ourada@cancer.org

·         Anna will email an electronic version of the SCP grid, links to a few other SCPs, and a link to the IOM report with the meeting notes and next meeting date

·         Anna will talk to Ken Joslyn about Electronic Medical Records with a focus on EPIC

·         Anna will bring other SCP examples back for the group to review at the next meeting

Next Meeting: August 14, 1:00-2:30pm, at the American Cancer Society, 2520 Pilot Knob Rd, Suite 150, Mendota Heights, MN