{"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 <\/p>\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 <\/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 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 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 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 It evolves over time \u2013 our Council learned and changed since it was formed four years ago:<\/p>\n 1. Have a good, broad representation of people on the committee.<\/em><\/p>\n It helps to have broad representation of people\u2014of all ages, people who are new to the organization, long-time patients, people just starting treatment, or people who had their treatment a few years ago. You need a variety of people and perspectives.<\/p>\n In cancer care\u2026it\u2019s nice to have the perspective of people who have been through treatment not too long ago and also to have the perspective of people who are out of treatment \u2013 who have been through it. We also want to have a breadth of people with different cancer types on the Council to hear the concerns from patients with those cancers. What does a colon cancer patient need? A lung cancer patient? How long ago did they have treatment? What are their needs at different stages?<\/p>\n 2. Rotate new members onto the committee.<\/em><\/p>\n Allow people to \u201cgraduate\u201d from the committee \u2013 it shouldn\u2019t be a \u201ctenured position.\u201d Although it\u2019s good for the committee to have some continuity, it\u2019s also a good idea to rotate new people onto to the committee and allow others to move on to new things.<\/p>\n 3. Establish a clear charter. <\/em><\/p>\n What are we about? What do we want to accomplish? What are some of the things patients want to know? What do the patients think?<\/strong> You need to include your patients in creating the charter \u2013 and we did.<\/p>\n The website includes a few words from five founding members.<\/a><\/strong> Some excerpts:<\/p>\n Norm: <\/strong>A few years ago, PAMF conducted an in-service training for physicians, nurses and anyone who came in contact with prostate cancer patients. Dr. Bassett<\/a> asked several men to speak about our own prostate cancer experiences. Having the cancer patients share their experiences at the in-service contributed to the idea of forming the Cancer Care Advisory Council. The committee and the survivorship program are really good ideas. When I was diagnosed with prostate cancer in 2006, I had to ask if there were other patients who had undergone the various treatments that I could talk to. Now, this whole communication process is routine and offered up-front instead of waiting for the patient to ask the questions, and this is just one of the really positive outcomes of the committee.<\/p>\n Susie: <\/strong>I was invited to join PAMF’s Cancer Care Advisory Council in 2007 by a friend, who is also a breast cancer survivor and one of the first patients on the committee. From the beginning, I found this to be a very welcoming group and a visionary experience. I’d been doing a lot of advocacy work for breast cancer survivors in the local community and this was a natural extension of this activity.<\/p>\n As part of this committee, I want to make myself available to patients and formalize my role into a patient navigator and continue with patient advocacy. I’ve already begun to do this informally and have accompanied patients to appointments \u2013 just to provide support and an extra set of ears. I feel my role is to help and empower people.<\/p>\n Joan: <\/strong>Some of the other committee members and I participate in meetings on cancer survivorship in the broader community and at local hospitals. Early on, we participated on a panel at a hospital where many of the doctors did not know what survivorship meant. After the three of us gave our talks, most of the physicians came up to us and said they had never realized the full impact of cancer treatment on patients. One of them even said, \u201cThank you for coming because I forgot that not only am I a doctor, but I’m also supposed to be a healer. You were the hit of the meeting!\u201d That was amazing to me. I felt like shouting, \u201cYeah!\u201d Sometimes there can be a disconnect between the physicians and patients. That’s why hearing it from the patient is so important. Participation! Partnership!<\/p>\n ______<\/p>\n More info:<\/p>\n <\/em><\/strong><\/p>\n PAMF: www.pamf.org<\/a>, www.facebook.com\/paloaltomedicalfoundation<\/a>, www.twitter.com\/paloaltomedical<\/a>.<\/p>\n Cancer Care Advisory Council and Charter: http:\/\/www.pamf.org\/cancercare\/survivorship\/committee.html<\/a> Notes from Dave: Survivorship is a new term to me – here are some resources: <\/em><\/p>\n It strikes me as morphing the concept \u201cWhat to Expect While You\u2019re Expecting\u201d to \u201cWhat to do after you thought your time was up.\u201d<\/em><\/p>\n <\/em><\/p>\n <\/em><\/p>\n <\/em><\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" Guest post by Erin Macartney (Twitter) of Palo Alto Medical Foundation. We would welcome similar posts from providers (or anyone else) who’s illustrating what we advocate 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 […]<\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","enabled":false}}},"categories":[5,3,7,62,2,2304],"tags":[],"coauthors":[],"jetpack_publicize_connections":[],"yoast_head":"\nEvolution of a Cancer Patient Advisory Council <\/strong><\/h2>\n
Let the Patient Perspective Drive<\/strong><\/h2>\n
Patients Create the Charter <\/strong><\/h2>\n
Patients Improve and Assess the Experience<\/h2>\n
for Patients, Families, Caregivers <\/strong><\/h2>\n
Patients Partner with Medical Staff on the Council <\/strong><\/h2>\n
\n
Lessons Learned<\/strong><\/h2>\n
Interviews with patient members<\/strong><\/h2>\n
\n_____<\/p>\n\n
\n<\/em><\/p>\n