Ordinarily we limit guest posts to current members of SPM, but this is an extraordinary case. Duncan Cross’s post illustrates so many aspects of how empowered, engaged, activated patients view their lives, and how important it is to have an effective partnerships with their medical professionals. This is exemplary – except for the physician’s rejection of the patient’s perspectives.
Duncan Cross writes “the best-written patient blog on the web”, focusing on the common experience of illness, shared by all sick people no matter how different their diagnoses. He created ‘Patients for A Moment‘, the first blog roundup for patients by patients, and contributed to two books on chronic illness. His novel, League of Mortals, is now available. This blog post first appeared on Duncan’s blog and was reproduced here with permission.
This is the type of letter that e-patients should be writing their doctors for both good and bad performance. Thanks for sharing, Duncan!
My gastro retired, and the practice suggested a new one. She was mean. I wrote her this letter, put a stamp on it, and mailed it:
I want to apologize for my demeanor at our appointment last Thursday. I have some anxiety issues with respect to physicians, and they were in full force that day. I probably seemed defensive and upset, and I know that is not conducive to a good patient-physician relationship.
That said, I think it best that I find another provider. Part of my reaction was to how one-sided our conversation felt. I have had Crohnʼs disease for 20 years, and my case has been unusual and difficult in many respects. This has forced me to learn about my illness, stay up on trends in research, and pay close attention to my body and its signals. You would have to search hard to find a patient more knowledgeable, more capable, and more invested in their care. None of that seemed to matter to you at all. You were treating a disease, not a person.
I have been sick long enough to remember when physicians could do that freely – but those days are over. The prejudice that allowed physicians to lord over their patients is no longer excusable. So your attitude was a shock – like finding segregated lunch counters – and I did not know how to respond. I am sure you feel proud of the hard work that got you into that room, but keep in mind that what you endured is not a fraction of what I had to go through to get there. That you had trouble recognizing that fact was baffling and infuriating.
From my deep experience with this illness, let me say that when a patient complains of ʻpainʼ, you must take it seriously. The idea that pain is only real when the patient has obvious bowel inflammation is bad medicine. Physicians cause tremendous harm to patients by not taking pain seriously: nothing is more depressing or discouraging, or more alienating. One source of my anxiety is that a gastroenterologist told me my pain was irrelevant, during the worst flare of my life; my despair drove me into suicidal depression. You reminded me how much I wanted to kill myself back then.
My disease has taken a great deal from me: my career, my vitality, my sanity, my self-esteem, my hope. But by far the worst aspect of this disease is that it leaves me beholden to physicians who donʼt actually give a shit about me. It took a lot of work and a lot of pain, but I finally got to a point where I donʼt need that brand of help. So while Iʼm disappointed that you wonʼt help me get better, I am very much relieved that I donʼt have to let you make my life any worse. I worry your other patients are not as lucky as I am.
If you wish to be helpful in your practice, you must learn to regard those patients as partners and equals in their care. Until you do, you will never be able to really help them – and you may well hurt them.
I never heard back.
Ever since the formation of the Society for Participatory Medicine we have discussed curating and sharing resources about participatory medicine. The resources might be videos, websites, blog posts, tutorials, and other online resources that could benefit patients, caregivers, and clinicians.
For obvious reasons we thought to focus first on patient/caregiver resources. But because of the many online resources available we felt we needed some dedicated leadership to successfully curate this. We had not considered the equally important provider part of the participatory medicine equation, even though I spend a great deal of time teaching physicians and other health care providers about participatory medicine.
Timing is everything. Recently, former SPM executive committee member Ileana Balcu asked if I had a list of participatory medicine resources for physicians for a project she was doing. I assembled a list and suggested she create a webpage of these resources that we could host as part of the SPM website. She agreed and created an important new contribution to the Society’s web offerings.
And it gets better. About six months ago I presented a tutorial on the principles of participatory medicine for physicians. This was part of a larger project about participatory medicine in cancer care that was professionally recorded. I asked the producer for my segment so we could re-purpose it. About the time Ileana was preparing her resource page I received the produced video and we added it to our new page. Unlike recordings of some of my and others’ longer presentations, this was concise (under 15 minutes) and professionally produced. We also added the video it to the SPM’s new YouTube channel, which we will use for many other things to come.
I’m thrilled that Ileana has agreed to continue to take point on editing both this page and the yet-to-be-created patient/caregiver page for the Society. Although it’s a great start, it should be considered to be in “perpetual beta.” It desperately needs additional curation and perhaps better organization. Please share your ideas here or with Ileana directly (yogileana at gmail dot com).
But we need leadership and followership. The Society is a volunteer organization. Nothing gets done unless someone steps up and leads the effort. Ileana has agreed to lead this effort, but she will need help. Please contact her if you’d like to help the cause. And if you want to lead other projects, please let me know or contact one of the other board members.
(We do have a vision for unifying the SPM’s publications, including the Journal of Participatory Medicine, this blog, and other web-based resources into an SPM publishing umbrella, but this requires financial resources and careful planning that is currently underway.)
Check out our new provider resources page here. And don’t forget to subscribe to our YouTube channel.
My comment on Susannah’s short post: “This wins my prize as the biggest government-based Mazel Tov in the history of the e-patient movement! Bringing heart and soul to health IT??? From someone who knows how people ACTUALLY use the internet?? How great is this??”
If you don’t know Susannah Fox’s views about data, here’s Regina’s post about Susannah’s jacket in the Walking Gallery of Healthcare, titled “Data Mote.” THIS is our new CTO.
I for one am sending my deepest personal thanks to HHS Secretary Sylvia Burwell. Tweet your thanks to her at @SecBurwell. This is SO much the right message to be sending. May this venture be blessed.
There are two sets of Meaningful Use draft regulations out for comment at present: (1) Proposed revisions to Meaningful Use Stage 2 (“MU2”), with comments due June 15 and (2) Proposed Meaningful Use Stage 3 (“MU3”) regulations, to be effective in 2017 at the earliest. The Society for Participatory Medicine has filed comments on both of these. (See the discussion, and links to the comment letters, below. See further discussion of MU2 and #NoMUwithoutMe last month on e-patients.net. There’s more info on the S4PM #NoMUwithoutMe resource page.)
We urge everyone reading this post who cares about empowering patients through better engagement with the health care system to file comments as well. In order to expedite this process, you can copy and edit the Society’s comments found here: MU2 and MU3, and then just paste them into the appropriate comment web pages. Each document includes at the top a link and instructions for submitting comments online directly to the federales. Easy peasy.
Numbers matter — but the only numbers that matter in cases like these are the numbers of comments filed through official channels. Tell your friends and neighbors. And do it now. The deadline for comments on MU3 is May 29, 2015, 11:59 pm ET. The MU2 comments are due a couple weeks later, but please file them at the same time as your MU3 comments. (You can also add your name to the National Partnership for Women and Families’ MU2 comment letter before June 12.)
SPM co-founder and co-chair Dr. Danny Sands is appointed our first representative
On Friday the following notice was distributed to members of our Society for Participatory Medicine. What a wonderful sign of medicine’s growing acceptance of the importance of patient-clinician partnership – and what a significant recognition of SPM as emblematic of this crucial collaboration we call participatory medicine.
Society for Participatory Medicine co-founder and Board co-Chair Daniel Z. Sands, MD, MPH, has been appointed as the SPM representative to a newly formed Advisory Board of the Center for Patient Partnership in Healthcare (CPPH), recently established by the American College of Physicians (ACP).
CPPH is guided by an Advisory Board for Patient Partnership in Healthcare chaired by Phyllis Guze, MD, MACP past chair of ACP’s Board of Regents. The Advisory Board includes representatives from patient organizations along with ACP member physicians and other multidisciplinary clinicians. Their goal is to develop programs and offer resources that promote authentic partnerships between patients and healthcare professionals to enhance quality, safety and the experience of care.
The Society for Participatory Medicine is a 501(c)(3) not-for-profit membership organization that seeks to encourage mutual collaboration among patients, health professionals, caregivers and others across the continuum of care. The Society provides a forum for its members to interact and exchange ideas on health issues, influence policy, advocate, conduct research, educate patients, caregivers, and health care professionals in best practices in participatory medicine. SPM fosters initiatives that impact the quality, efficacy, safety and viability of healthcare policy and practice.
The American College of Physicians is the largest medical specialty organization and the second-largest physician group in the United States. ACP members include 141,000 internal medicine physicians (internists), related subspecialists, and medical students. Internal medicine physicians are specialists who apply scientific knowledge and clinical expertise to the diagnosis, treatment, and compassionate care of adults across the spectrum from health to complex illness.
The advo-cacy of individual SPM members is gaining increasing visibility in the mainstream media, driving home the human impact of policies that help – or don’t help – patients be active contributors to their families’ health and care. This is excruciatingly important as America debates the proposed rule changes for patient data access mentioned here last month.
An important new post yesterday by @ChristinaFarr on the KQED Science blog, Patient Advocates Fight for Access to Medical Data: ‘It’s a Matter of Life and Death’, starts with the story of Julia Hallissy (right) and her daughter, in which her active engagement with the chart found many mistakes and missed facts. Our best-known member, Regina Holliday, is quoted as saying “This is a slap in the face of patient rights,” and is featured in the post’s cover photo and another picture.
Access to our records, and their easy flow from doctor to doctor, can literally be a matter of life and death, yet a report sent to Congress last month says some players are “knowingly interfering” with their transfer. Government policy must forbid this: it is a source of harm. And policy must encourage the flow of our data, including teaching providers how to teach their patients. Clearly there is value when patients help manage the data; we must enable it, even if it’s hard to do. Please, vendors – improve the software – make it easier for providers to help patients do it.
And hey, vendors – if your system is good at it (and has higher patient participation), brag about it! Shout about your achievements! This is important.
This blog welcomes guest posts from SPM members on relevant topics. This is a blog post by Annette McKinnon, an e-patient in Canada. Annette is an enthusiastic advocate for patient inclusion in research and healthcare decision making. She has had rheumatoid arthritisfor the past 30 years, and has a background in market research. She attended the Stanford Medicine X Conference in 2014 as an ePatient Scholar, and in 2013 and 2014 was moderator of the Reaching Out With Arthritis Research (#eROAR) tweetchat for the Arthritis Patient Advisory Board of ARC (Arthritis Research Canada).
She sits on the Board of Directors for the Sjogren’s Society of Canada, and is a volunteer Health Mentor for the Centre For Interprofessional Education in Ontario, a member of Patient Partners in Arthritis and the Canadian Arthritis Patient Alliance. She tweets as @anetto and blogs about health related issues at “Your Gold Watch – Rheutired“
Today I watched a youtube video of the Institute of Health Services and Policy Research (IHSPR) Policy Rounds – Improving Care of Multiple Chronic Conditions The webinar is from March 26, 2014. I found out that in Ontario chronic disease accounted for at least 65% of direct health care costs in 2010/11 and it would not surprise me if that number is typical across Canada. In the US that percentage might not be the same since the health care system is different.
This came over my transom from a friend who works with a major medical school’s digital publishing group. Seems both relevant, and high impact. – Casey
by Candace Barnes
When I left for the hospital
The night was bitter cold,
And snow lay on the ground.
I know of weather what I’m told;
There is no weather here.
My stay is longer than expected
And day folds into day.
Time passes slowly, hour by hour,
Less real the longer I stay.
But still the time marches on.
Coming home from the hospital,
The chill was gone from the air.
The snow has melted all away;
The yard is dotted with crocus here and there
And daffodils push through the ground.
While I was ill the seasons changed.
I left in dead winter, came home in early spring.
Just as the seasons chase one another,
My illness waxes and wanes.
If I am patient, spring changes come again.
Candace Barnes has been writing poetry since she was a child, finding solace in putting her private struggles into poetry. Barnes is the author of two books, one of which, Journey from Darkness, is an anthology of her poetry. She has lived in northern New Jersey for over 40 years, and has been diagnosed with chronic intestinal pseudo obstruction for 12 years. She is TPN (Total Parenteral Nutrition) reliant for the past five years, and enjoys reading and writing and getting out with her friends when she can.
The Choosing Wisely® campaign was launched in 2012 by the ABIM Foundation to encourage patients and clinicians to think about the tests and treatment choices they are implementing or requesting, and to avoid those tests that have proven to be overused and inappropriate.
Over the past three years, this initiative has engaged nearly 100 national and state medical specialty societies, regional health collaborative and consumer organizations. These organizations have identified more than 300 tests and procedures that must be scrutinized for their efficacy and efficiency before they are ordered.
In the Commonwealth of MA, Massachusetts Health Quality Partners (MHQP) is leading a multi-stakeholder effort to advance the Choosing Wisely campaign.
“The Massachusetts health care environment provides a fertile ground for Choosing Wisely to take hold,” said Barbra G. Rabson, executive director of MHQP. ” As a Commonwealth, we have made it a priority to find ways to achieve high quality and affordable care Choosing Wisely is another step in that direction.”
Created using Bitstrips. Text engine: Up Goer Five, “Can you explain a hard idea using only the ten hundred most used words? It’s not very easy.”
Bottom line: When you go to the doctor, any doctor, always ask for your records. Ideally, electronic versions of your records that you can look at, download to your own device (computer, phone, tablet), and share with your care team and your family.