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Conference Organizers to Affected Patients: “Go Fund Yourself”!

SPM member MaryAnne Sterling is Co-founder of tech startup Connected Health Resources – she’s a healthcare transformer and person-centered care activist whose motto is: no family caregiver left behind. A recent experience, what she calls her “go fund yourself” moment, is captured in this guest post.

maryanne sterling photo

MaryAnne Sterling

During the Holidays, I carry on a time-honored tradition in my family: baking cookies. Over the years, I’ve gotten into the habit of double-checking my recipe once all of the ingredients are in, to make sure I haven’t forgotten anything. A single missing ingredient will result in disastrous cookies. My husband, who knows how meticulous I am, teases me about this – to which I typically respond “old habits die hard”.

I use this same analogy to describe the missing ingredient at healthcare conferences around the country – the patient. And the family caregivers who comprise the backbone of our healthcare system. These critical components of the care team are not even invited to participate in discussions that are about THEM. In fact, a visit to the websites of these events, including those created to tackle the topic of “patient engagement,” reveals a list of distinguished speakers, all with advanced degrees, but few with a patient-level view of a disease or chronic condition.

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No Rhyme or Reason

HealthCareCosts (1)We have read and heard a lot about the disparities in the cost of care from one hospital or clinic to another. We have read and heard a lot of grumbling about the uneven availability of health care services in this country. Many of us have been outraged to learn that Pharma companies can charge whatever they want for drugs that they have developed  because our elected representatives passed legislation that provides Pharma with this discretionary power.

These same laws allow Pharma to provide a percentage of the direct cost of the medications to doctors. Although a mandate in the Affordable Care Act requires information on Pharma payments to physicians be made public via the CMS Open Payments online database, this is little consolation to thousands of patients who bear the brunt of this inequality in our payment system.

Because our system is so dysfunctional and our cost of care so elevated, there are daily instances of patients declaring bankruptcy because they cannot afford their prescription drug costs. There are also too many situations where patients are dying prematurely because they simply cannot afford to obtain the medications that could restore their health.

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On Making Patient Reviews of Physicians More Useful

I recently hosted a Google Hangout on Air entitled Patient Reviews of Physicians: The Wisdom of the Crowd? (presented by The Harlow Group LLC in association with The Society for Participatory Medicine).

I spoke with Niam Yaraghi (Center for Technology Innovation, The Brookings Institution) and Casey Quinlan (Mighty Casey Media) following their interesting back-and-forth online on the question of whether and how patient reviews of physicians can add value. Please take a look at the posts that preceded the hangout. Here are the initial post and reaction: Niam’s post and Casey’s post – as well as Niam’s follow up post and Casey’s follow up post.

Please feel free to watch the Hangout on Air. Further below, I’ve shared a version of my introduction to the hangout, as well as some of the takeaways suggested by Niam and Casey (and taken away by me). We need your help refining these takeaways in the comments.

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SPM applauds King v Burwell – “making healthcare accessible & participatory for all”

SPM handshake logo imageThe Society for Participatory Medicine believes that an effective healthcare system is a collaborative one, where care providers and the patients and families they care for work together toward the best possible health outcomes. The importance of this partnership cannot be overstated; its supporters range from the Institute of Medicine to the World Health Organization, echoing the words of visionary physicians like our movement’s founder “Doc Tom” Ferguson and health data visionary Warner Slack MD, a colleague of SPM founders, who said patients are “the most under-used resource” in the healthcare system.

Anything that restricts families’ access to that system harms healthcare, not to mention children, adults, and elders in their time of need. Preventing this societal harm – by ensuring access to care – was the foundational purpose of the Affordable Care Act … more correctly known, in fact, as the Patient Protection and Affordable Care Act (PPACA). Yet twice opponents of this act have sought to defeat it.

In yesterday’s King v Burwell decision the US Supreme Court has cleared the way for PPACA’s promise to be fully delivered to the American people. SPM applauds this ruling, and looks forward to advancing the national effort to make healthcare affordable, accessible, understandable, and — most importantly — participatory for all Americans.

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Tune in for Patient Reviews of Physicians: The Wisdom of the Crowd?

Patient Reviews of Physicians: The Wisdom of the Crowd?
Google Hangout On Air Hosted by David Harlow with Niam Yaraghi and Casey Quinlan
Wed, Jun 24, 3:00 PM – 4:00 PM ET

Presented by David Harlow (aka HealthBlawg) in association with The Society for Participatory Medicine.

I am hosting a conversation with Niam Yaraghi (Center for Technology Innovation, The Brookings Institution) and Casey Quinlan (Mighty Casey Media) following their interesting back-and-forth online on the question of whether and how patient reviews of physicians can add value. We will consider the old saw that healthcare is unique and can’t be dealt with in the same way as other products and services, and explore productive ways forward around recognizing the patient voice in evaluating health care providers.

Please read Niam’s and Casey’s posts before tuning in: Niam’s post and Casey’s post – as well as Niam’s follow up post and Casey’s follow up post.

You should follow all three of us on Twitter: @healthblawg, @niamyaraghi and @mightycasey.

See you on the 24th. Please come prepared to join the conversation by posting comments and questions on the feed – and submit some in advance using the Q&A function. We will address them as time permits.

Join us for what promises to be a very interesting Google Hangout On Air. (Please RSVP on the Hangout page.) It will be archived for later viewing as well.

Please share this information with anyone who you may think would be interested.

David Harlow is a health care lawyer and consultant at The Harlow Group LLC, and chairs the Society for Participatory Medicine’s public policy committee. Check out his home blog, HealthBlawg, where a version of this post first appeared. You should follow him on Twitter: @healthblawg.

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The Role of Dignity in Health Care

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Every patient wants to be treated with dignity.  However, when you are sitting in a doctor’s exam room, holding together a hospital gown that somehow does not want to completely fit around you, or close properly, it is difficult to feel that you have any dignity.  When the doctor comes into the room and barely listens to you or looks at you, while he or she is checking your health record on the computer, it also feels as though you do not have much dignity.  When the doctor explains the treatment options for your problem and does not take the time to listen to you analyze your issues, a culture of dignity is missing from this interaction.

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Guest Post by Matthew Katz, MD: E-Patients Deserve E-Doctors

Dr Katz1Matthew S. Katz, MD, is the Medical Director of Radiation Oncology at Lowell General Hospital and a lifetime member of S4PM. He is former Chair of Communications Committee for the American Society for Radiation Oncology (ASTRO) and external advisor for Mayo Clinic’s Center for Social Media. He is co-moderator of the #radonc journal club and serves on committees for the American Society of Clinical Oncology and Massachusetts Medical Society. His main areas of interest are cancer care, patient education and health empowerment.


E-Patients Deserve E-Doctors: Addressing the Needs of Both to Make Health Care Better for Everyone

Everyone deserves a chance to be healthy. Physicians, of course, focus on helping patients. Unfortunately, I often see patients’ frustrations with the health care system itself directed toward doctors.

Doctors are under increasing pressures on multiple fronts. Yes, we’re imperfect, but making physicians the primary focus of patient anger will not solve problems we all face as humans who will, at some point, need health care. (Note: I’m using doctors as an example for this piece, but my observations apply to all health care professionals.)

Patients need doctors. Doctors need patients. Let’s find a way to value both.

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“Taxpayers need better access”: Last day to comment to CMS on #NoMUwithoutMe

Screen capture of Palm Beach Post article

Click to read full text

Today (11:59pm ET) is the deadline for public comments on the proposed rollback of “Meaningful Use 2″ regulations for patient access to their medical records. SPM feels that this is a major issue for enabling patient-provider partnerships; as SPM co-chair Dr. Danny Sands often says, “How can patients participate if they can’t see what I see??”

SPM’s action page is here, and the blog post by SPM health policy chair, attorney David Harlow, is here. You can speak up – and should! This is open to citizens – you don’t have to be as erudite as policy experts.

I (and I imagine most of SPM) feels that the issues are common sense, not rocket science. For instance, John Boden of ElderIssues LLC has corresponded with me from time to time, and has recently sent me some editorials from the Palm Beach Post, like the one at left: Taxpayers need better access to health records. Excerpt:

Have you looked up your medical records using your computer or smartphone yet?

Why not? You should. If you’re a taxpayer, you’ve paid for the right to do this. You’ve paid a lot.

A decade ago, the Bush administration hired Rand Corp. scholars to research how much could be saved if the medical system ditched paper charts and went digital. … Their study envisioned newly empowered patients taking charge of their chronic diseases with the help of seamless information technology, no longer enduring duplicative tests — or worse, mistakes — because their doctors didn’t talk to each other. …

Back in Washington, the U.S. Centers for Medicare and Medicaid Services finds itself at a crossroads. Harried doctors and hospitals have demanded a weakening of the “meaningful use” patient-access standard. How low would it go? The agency would greenlight stimulus payments to hospitals so long as a single patient — just one — successfully looked at his or her digital medical record. The existing standard is an already low 5 percent.

That would pretty well wipe out any compelling business reason for tech companies to create consumer-focused patient portals.

Note that although arguments about health policy often split along philosophical or party lines, John Boden is not your stereotypical “left-wing Commie pinko” (as it used to be called when I was young…)  He’s a Vietnam combat veteran (helicopter pilot), is deeply involved in helping people manage elder care in the retiree-heavy state of Florida, and he correctly ties the whole idea to the Bush administration’s Rand Corp report that documented the projected savings.

In addition to the above links, our original post was “No MU without ME”: join the campaign to fight health data hiding. And to sum it up concisely and clearly, here’s SPM member Casey Quinlan’s excellent cartoon edition – clear, simple, yet accurate.

bitstrips image

(c) Mighty Casey Media | Creative Commons 4.0 Non-Commercial

Taxpayer-patients do deserve good, robust, easy to use access. Please do comment! If you want, you can paste in a link. Again, the deadline is 11:59pm ET today (Monday June 15).

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“The perfect thing a doctor can tell a patient with chronic illness”

From Catherine's postThat’s the title of a new post on the Mighty blog written by Catherine Richardson, a 23-year-old chronic illness patient from Vancouver, Canada, who also blogs at findingmymiracle.com. It’s about something simple, but helpful, that her doctor told her, which illustrates the sense of “We’re in it together” that e-patients so often seek from their clinicians.

After listing some of the frustrations chronic patients often report, she wrote:

I expressed this frustration to my doctor, although I knew there was nothing he could do about it. What he told me, however, actually did help.

He said, “I know. But you’re doing a good job, and I think you’re handling everything really well.”

She continues:

It was the perfect thing to say. There was no pressure on me to put on a brave face. There was no expectation that I should be upbeat and optimistic all the time. There was no dismissal with false hope or empty consolation.

Instead, there was awareness of the “chronic” part of my chronic illness. There was permission to be realistic and an understanding that I was weary. But it was also good to know that even though it felt at times as if I were stuck in place, weighted down by my illness, I was actually still moving forward.

And because of all that, I also felt encouraged.

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Guest post by Annette McKinnon: Power Equality: Not Even on the Radar

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 AnnetteMcKinnon 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

Late last year I was pleased to be invited to attend a conference called “Reaching the Summit: Leading the way from Interprofessional Education to Practice”. Having patients included with educators and practitioners meant that the healthcare stakeholders sitting around the table were representative of more of the members involved in the health team.

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Guest post by Duncan Cross: I Sent This Letter To A Doctor Who Pissed Me Off

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 sicDuncan Crossk 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:

stampDear Dr. [xxxx]

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.

Sincerely,
(Duncan Cross)

I never heard back.

 

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