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 value them as full partners.”
As Erin said in her cover note, “the Palo Alto Medical Foundation created a Patient-Driven Cancer Patient Advisory Council – to engage, empower, inform – doctors, patients and caregivers – four years ago. Let’s get others on board and doing this too.”
Evolution of a Cancer Patient Advisory Council
We created the Cancer Patient Advisory Council 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.
The original Cancer Patient Advisory Council helped develop standards for supporting cancer survivors while they are transitioning into different phases of life – 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.
Today, our cancer care program is called “Focus on Living,” and the function (and charter) of the Cancer Patient Advisory Council has evolved to include many other areas of information sharing, education, program development – and outreach and collaboration with other community groups.
Let the Patient Perspective Drive
We wanted to find out patients’ 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’re now doing in the cancer care clinic – and continue to improve and refine, based on their needs and wishes.
The Committee is primarily patients now – 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!
As the chairperson of our Council says, “It’s about listening to our patients and designing workflows around their needs—not ours. We keep evaluating, keep evaluating and keep changing – 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’s an important function of the advisory committee – to get primary input from the patients. That is always first in mind.”
Patients Create the Charter
The Council members created the Advisory Council Charter. 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, “Are we doing this right? Is the wording right?” 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.
Patients Improve and Assess the Experience
for Patients, Families, Caregivers
A primary goal is to make sure patients all along the cancer care continuum – from newly-diagnosed, to those in treatment, and people done with treatment – get information from a cancer care navigator, and help with finding resources. Informing is more about gearing the education resources to the patient – however and wherever they need it. Also, informing the doctors and making sure they get the patient perspective and are improving the experience too.
Our patients advise on the creation and effectiveness of patient resources, classes, community events and complimentary services – they get to say whether it’s working.
The patients also help our cancer care program facilitate partnerships and collaboration with other community groups to improve outreach opportunities, without duplicating well-established patient programs elsewhere. We’re continually reaching out and linking arms.
Patients Partner with Medical Staff on the Council
The Council is a combination of cancer patients and medical staff at PAMF, who work together to create partnership between the patient, caregivers and the health care team. The group is made up of the following members, but it is not limited to:
- Cancer Care Program Clinical Director
- Cancer Care Program Administrative Director
- Committee Chairperson / Nurse Navigator
- Physician/Oncologists
- Social Worker
- Nine patients (three from each PAMF region)
Lessons Learned
It evolves over time – our Council learned and changed since it was formed four years ago:
1. Have a good, broad representation of people on the committee.
It helps to have broad representation of people—of 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.
In cancer care…it’s 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 – 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?
2. Rotate new members onto the committee.
Allow people to “graduate” from the committee – it shouldn’t be a “tenured position.” Although it’s good for the committee to have some continuity, it’s also a good idea to rotate new people onto to the committee and allow others to move on to new things.
3. Establish a clear charter.
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? You need to include your patients in creating the charter – and we did.
Interviews with patient members
The website includes a few words from five founding members. Some excerpts:
Norm: 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 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.
Susie: 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.
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 – just to provide support and an extra set of ears. I feel my role is to help and empower people.
Joan: 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, “Thank 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!” That was amazing to me. I felt like shouting, “Yeah!” Sometimes there can be a disconnect between the physicians and patients. That’s why hearing it from the patient is so important. Participation! Partnership!
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More info:
PAMF: www.pamf.org, www.facebook.com/paloaltomedicalfoundation, www.twitter.com/paloaltomedical.
Cancer Care Advisory Council and Charter: http://www.pamf.org/cancercare/survivorship/committee.html
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Notes from Dave: Survivorship is a new term to me – here are some resources:
It strikes me as morphing the concept “What to Expect While You’re Expecting” to “What to do after you thought your time was up.”
Great article and an interesting perspective. Thank you.
Everyone, Rachael modestly didn’t say so, but she’s one of the patients involved in the advisory council.
Rachael, I’d love to hear some of the issues you (all) have discussed in your participation there. What sort of topics are brought up, and can you share a time when patients’ opinions changed the course of events?
When in doubt: ask. Then listen.
What can happen between those two points is the dividing line between adequate health care that “does the job” or excellent care that actually empowers and changes a patient’s life for the better.
I write from both sides — all sides — of the health care picture. As the child of a chronically ill patient I grew up thinking that traipsing up to the Mayo Clinic in Rochester from central Iowa was fun. As a young adult I worked in public relations and marketing for three different health care institutions, academic, private, then corporate. Then in l998, at 43, I diagnosed with a locally advanced breast cancer. My best friend put a notebook in my hands and became what Dave deBronkart calls an “epatient” on all levels. I knew I had choices, difficult ones. I read, asked, and read again. The day I realized the simplicity in gently asserting my comfort levels – when I’d had my limit by a tech starting an IV – was the day many things turned around. “Let’s get someone else do to this,” I said. “My veins are shot.”
To see Erin Macartney’s post today brings all of these health care experiences back to me in a rush. The thought of a cancer advisory council that isn’t just an entry on a strategic plan but a passionate group of indivuals who understand cancer, have experienced treatment, and are actually empowered with refining and defining care for those entering the journey thrills me beyond measure. This is a clear example of what the simplest measures, when authentically delivered can actually do to change the face of health care. Why, until now, have hospitals been so afraid to embrace the essentially human aspect of health care as readily as they have the technology to treat it? Perhaps we’ll find over time that a patient who understands that she has choices, or that he actually doesn’t have to have a radical prostatectomy at 53, when working with health care professionals who get out from under the thumb of attorneys or “systems” that impede them from acting with common sense, will actually improve patient outcomes and the cost of care.
Any health care professional involved in treating people with cancer needs to take a look at this post. Survivors need to consider this post, and consider what can be distilled from their experience to help make the journey better for others.
I’m grateful for people like Erin and Dave who are showing all of us what we can do by talking. And listening. It makes a world of difference.
For anyone who wonders about the above comment, it’s from Kathi Apostolidis’s excellent “e-Health Greece” blog.
(We sometimes get spam comments in non-Latin alphabets; this isn’t one.)