{"id":7604,"date":"2010-10-23T17:23:31","date_gmt":"2010-10-23T21:23:31","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=7604"},"modified":"2010-10-24T11:25:28","modified_gmt":"2010-10-24T15:25:28","slug":"how-one-cancer-center-lets-patients-call-the-shots","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2010\/10\/how-one-cancer-center-lets-patients-call-the-shots.html","title":{"rendered":"How One Cancer Center Lets Patients Call the Shots"},"content":{"rendered":"

Guest post by Erin Macartney (Twitter<\/a>) of Palo Alto Medical Foundation. We would welcome similar posts from providers (or anyone else) who’s illustrating what we advocate<\/a> in the Society for Participatory Medicine: truly patient-centered care, in which “networked patients shift from being mere passengers to responsible drivers of their care, and which providers encourage and value them as full partners.”<\/p>\n

As Erin said in her cover note, “the Palo Alto Medical Foundation<\/a> created a Patient-Driven<\/em> Cancer Patient Advisory Council \u2013 to engage, empower, inform \u2013 doctors, patients and caregivers \u2013 four years ago. Let\u2019s get others on board and doing this too.”<\/p>\n

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Evolution of a Cancer Patient Advisory Council <\/strong><\/h2>\n

We created the Cancer Patient Advisory Council<\/a> at PAMF in 2006 to help empower patients to be part of their own cancer care team and integrate the care plan across all physicians caring for them.<\/p>\n

The original Cancer Patient Advisory Council helped develop standards for supporting cancer survivors while they are transitioning into different phases of life \u2013 and helped let patients and families know their concerns would be listened to, and long-term stability and support would be available to them at all stages of their journey.<\/p>\n

Today, our cancer care program is called \u201cFocus on Living<\/a>,\u201d and the function (and charter) of the Cancer Patient Advisory Council has evolved to include many other areas of information sharing, education, program development \u2013 and outreach and collaboration with other community groups.<\/p>\n

<\/strong><\/p>\n

Let the Patient Perspective Drive<\/strong><\/h2>\n

<\/em><\/p>\n

We wanted to find out patients\u2019 perspective on improving cancer care. Instead of asking them after the fact, we wanted them to bring their ideas to the committee on a regular basis. The patients are active on the committee and helped us set up our ideas of what we\u2019re now doing in the cancer care clinic \u2013 and continue to improve and refine, based on their needs and wishes.<\/p>\n

The Committee is primarily patients now \u2013 and patients have recruited other patients. Three members are staff, the rest are patients: six breast cancer patients, one brain cancer patient, two prostate cancer patients, and other diagnosed cancer patients. We take their recommendations and feedback and get it done!<\/p>\n

As the chairperson of our Council says, \u201cIt\u2019s about listening to our patients and designing workflows around their needs\u2014not ours. We keep evaluating, keep evaluating and keep changing \u2013 always asking ourselves these questions and efforts to improve patient care, add value and improve efficiencies. We continually survey our cancer care patients and run ideas past them, so we can adjust if needed. It\u2019s an important function of the advisory committee \u2013 to get primary input from the patients. That is always first in mind.\u201d<\/p>\n

Patients Create the Charter <\/strong><\/h2>\n

The Council members created the Advisory Council Charter<\/a>. The patients in the group are the ones actually making changes and finalizing things. We ask the patients on the committee to help with survey creation and do focus groups with them to ask, \u201cAre we doing this right? Is the wording right?\u201d We show our outcomes measurements surveys to patients beforehand on the committee and they tell us how we should frame it with questions or where to modify.<\/p>\n

Patients Improve and Assess the Experience<\/h2>\n

for Patients, Families, Caregivers <\/strong><\/h2>\n

A primary goal is to make sure patients all along the cancer care continuum \u2013 from newly-diagnosed, to those in treatment, and people done with treatment \u2013 get information from a cancer care navigator, and help with finding resources. Informing is more about gearing the education resources to the patient<\/strong> \u2013 however and wherever they need it. Also, informing the doctors and making sure they get the patient perspective and are improving the experience too.<\/p>\n

Our patients advise on the creation and effectiveness of patient resources, classes, community events and complimentary services \u2013 they get to say whether it\u2019s working.<\/p>\n

The patients also help our cancer care program facilitate partnerships and collaboration <\/strong>with other community groups to improve outreach opportunities, without duplicating well-established patient programs elsewhere. We\u2019re continually reaching out and linking arms.<\/p>\n

Patients Partner with Medical Staff on the Council <\/strong><\/h2>\n

The Council is a combination of cancer patients and medical staff at PAMF, who work together to create partnership<\/strong> between the patient, caregivers and the health care team. The group is made up of the following members, but it is not limited to:<\/p>\n