Healthy Recipe

Now this is patient-centered care.

This may be the most wonderful participatory innovation I’ve seen since OpenNotes in 2012.  This one’s completely different: OpenNotes is about patient access to the medical record, but this one invites patients to see their tissue samples, simply so they can have a sense that their tumor is not something that’s unknowably beyond their experience. Here’s the 2018 article about it. (I speak from experience when I say there’s something inexpressably powerful about anything that lets me understand what’s happening. In my case it was viewing my CT scans in the OsiriX open source radiology viewer.)

Started in 2017 by pathologist Dr. Lija Joseph at Lowell (Mass.) General Hospital (part of the Wellforce Healthcare system, with Tufts and Melrose Wakefield Hospital), the program has produced some heartwarming responses from patients age 13 to 86. Over 100 of them, so far.

See Dr. Joseph and one of her patients on this WCVB news clip from 2018. Other coverage:

• 3 minute video, November 2019: “The value of this program has been astonishing” … “Some of them just want to touch the computer screen”

• An article on the website of the College of American Pathologists, with multiple videos: Pathologist Creates Powerful Program Providing Patients an Up-Close and Personal Look at Their Cancer

Linnea Olson with Dr Joseph in her office

And how did this innovation arise? Dr. Joseph read the story of famed lung cancer e-patient Linnea Olson @1111linno (who also lives in Lowell), and thought to herself, “A patient in Lowell should be able to view an example of the type of her cancer in Lowell!” This is truly patient-centered thinking.

Linnea lives not far from me so we’ve met; I reached out to her about this post and she said this about Dr. Joseph:

She is incredibly gracious and I think this program is wonderful. When I finally got to see a slide of my own cancerous cells under a microscope, I found it so empowering.

 

It has always struck me as odd that I was not shown my original tumor (or at least images of it) – something that was part of me. I applaud Dr Joseph for demystifying a disease that is often anthropomorphized into “other”—it is actually just our own cells run amok. Once you see that it is less frightening.

Congratulations to Dr. Joseph and her team, and thanks to radiologist and SPM lifetime member Matthew Katz MD (at left in this photo, at the Lowell General lunchroom) for telling me about it. (And yes, for the eagle-eyed, that’s my Interoperability Showcase volunteer shirt. :-) The crusading never ends!)

“The cure for anxiety is knowledge and preparation.”

That line is from the hip and edgy (and smart) Stanford doc @ZDoggMD in the amazing live conversation on YouTube he had with his 12 year old daughter last Friday. Here are some resources.

Society for Participatory Medicine’s COVID-19 Resources

Check out our resource page for COVID-19 information, support, and coping resources.

Peter Elias MD

On our SPM Connect member forum, life member & former board member-at-large Peter Elias MD, a retired family physician, posted the answers he’s been giving friends & family who ask his thoughts. I suggested the thoughts should have a broader audience, so he posted them on his personal blog.

Peter’s always been the kind of doc who believes in teaching people whatever they have an appetite for. Here’s how it starts:

The first question is: How bad will the coronavirus pandemic be in the US.

The short answer is, we don’t know – but it **could be** pretty nasty.

An important point, though, is that we are not helpless here. This is not like predicting a weather event where we cannot control where the hurricane goes or how strong it is. Our individual and societal behaviors will have a big impact on what happens.

Additional thoughts and resources:

• Seven million people have already viewed COVID-19 Update: A Message From Concerned Physicians, by Orthopedist Howard Luks (@HJLuks) with Bryan Vartabedian @Doctor_V and five other doctors. (The total includes 5 million on KevinMD, where it’s been re-shared two million times.)
• KevinMD has a list of his broad range of other physician commentary. If you want to convince skeptics that there really is a problem, that link alone is useful.
• The World Health Organization has a good Advice For Public page, including (lower down) some social media tiles (“memes”) worth sharing.

Editor’s note: This post is from Amber Soucy MSN, RN, a board member of our Society for Participatory Medicine. Like many front-line health workers she hides the stress (see her profile photo at right), but this era is tough in ways nobody ever signed up for, and this post covers an angle that’s all Amber: the difficulty of being kept away from the patient. (I myself created the photo composite in the header image, with her permission; it’s not something she submitted.) Here’s her post.

Amber’s Facebook profile photo

I’m a social person by nature. I love talking, interacting, and learning with and from others. Never in my career as a nurse did I think that I wouldn’t be able to be social.

COVID-19 has impacted all of our lives; some might be out of work and stuck at home, others might be struggling to make ends meet and are worrying about not being able to put food on their tables to feed their families. Me? Well, I’m a nurse so I’m on the front line. I work at a level 1 trauma academic hospital in Boston, MA and we are always booming. Patient after patient, code after code, we see and treat thousands of patients each week. Now with COVID-19, we have even more patients that are not only presenting to our facility but that are more critically ill.

One of my passions is improving the patient experience. I focus my efforts on strengthening the patient-provider partnership (I’m a board member of the Society for Participatory Medicine), and laying down a foundation of trust so that I can collaborate with my patients and allow them input in their plans of care. I spend time by the bedside, holding my patients’ hands, conversing about their past, present and future, and learning from them every step of the way. I care, I truly do.

But now, I can’t keep my line of communication open with my patients. Our communication is closed the minute I close their room doors. I don’t like knowing patients are closed off. I don’t want them thinking and feeling as if they are alone. I hate that we can’t allow visitors to cheer our patients up. I hate not being able to be present.

The mental and emotional toll that COVID-19 is imposing on healthcare professionals is unreal and truly unprecedented. I would hope that nurses and doctors entered the profession with the desire to help, care and treat. I mean, that’s definitely why I chose nursing as a career. But now this virus is wedging itself between my patients and me and it’s, by far, the biggest barrier I have ever faced.

The minute I leave a patient’s room and close their door, I leave them alone. They’re already riddled with fatigue and general malaise, but now I feel like I’m leaving them helpless and hopeless. And that’s exactly how I’m feeling too.

I cry almost every day and night thinking about how I wish I could have done more, how I wish I just could have been more present and caring. But I can’t, and it’s not by choice but rather because of the brutally crucial precautions to keep myself, my hospital community, and the community at large safe and healthy.

I’ve needed to accept that it’s okay to not be okay about this. It’s okay to feel, whichever end of the spectrum those feelings may land. We are all in this together and the more people know and understand this, the less alone we should feel. And the feeling of not being alone is the greatest and most important right now. We need it.

The Society for Participatory Medicine (SPM) and the Health Story Collaborative (HSC) are partnering during this time to bring the power of storytelling to health care and explore what it means to practice participatory medicine in times of COVID-19. Please read the below and share your stories.

In coming weeks watch for other collaborative activities including two moving and powerful patient stories co-hosted by SPM, HSC and Inspire, and an interview with Danny Sands, SPM co-founder and Annie Brewster, Health Story Collaborative founder with stories from the front lines.

From Health Story Collaborative

We would like to hear from you and share your stories!

Health Story Collaborative is a non-profit organization whose mission is to harness the healing power of stories.  Our belief, supported by research, is that storytelling is healing for both story sharers and listeners. As we collectively navigate all the challenges we are facing during this pandemic — isolation, risk, sickness, anxiety, fear–our mission of healing through stories feels even more imperative.  Through sharing stories, Health Story Collaborative aims to foster connection and reflection.  You may view our collection of stories by clicking here.

Please consider sharing your story about coping during these challenging times, navigating illness or facing a health challenge, or of being a care provider during these uncertain times. We believe that a story can be told in many ways. We welcome poems, essays, visual art, music, audio clips, or any other creative medium you choose.  Please visit our website for more information regarding our guidelines for story sharing.  Depending on the volume of stories received we cannot guarantee that all stories will be published, but selected submissions will be featured on our Blog.   Regardless of its publishing status, we believe there is value in the process of creating a narrative.

Please share your story with us by emailing us at info@healthstorycollaborative.org.  We look forward to hearing from you!

Sincerely,

The Health Story Collaborative Team

Guest post by SPM member Pam Ressler RN, MS of Stress Resources LLC. See bio at end.

I have just finished co-teaching a month-long elective on the topic of pain to a group of rising 4th year medical students. In collaboratively planning the curriculum with my colleagues, we included the necessary “test-worthy” facts about pain management, but given the current climate of fear and uncertainty of the global pandemic, we also left space for exploring the broader experience of fear, pain and suffering.

All humans will experience pain in their lives, some of us more than others, but pain is a universal experience of being mortal. Navigating these uncertain days of COVID-19, pain and suffering are more prevalent than ever. Our exposure to pain, suffering, and fear is enormous — whether we are a healthcare provider, a person living with chronic health conditions, or a family member.

Even more challenging is the uncertain nature of the COVID-19 pandemic, its unpredictability with an unknown endpoint. We are receiving mixed messages from the media and public health officials;  being asked to isolate ourselves from others while at the same time being told that loneliness and isolation pose significant health risks, especially to individuals with chronic illness. For those in of us working in healthcare, fear of contracting COVID-19 is heightened by lack of adequate personal protective equipment, unrelenting work schedules, and compassion fatigue.

This has left us with the question: How do we care for others in pain when we are also hurting and suffering? While I don’t have great answers to that question, I can speak from my own experience.

As a nurse I was taught to be observant to signs of pain and distress in patients, to be vigilant in providing appropriate pain relief. I was not taught to be vigilant or observant to my own fear, pain and suffering. COVID-19 has presented an opportunity to recognize the intense toll this pandemic is taking on each of us. Our ability to be resilient, to be able to bend and adapt to adversity, is being tested in ways many of us have never experienced.

Raising our resilience in times of great stress can boost our ability to navigate pain and suffering with less reactivity and greater wellbeing. Finding tangible ways to shift or pause during our stressful days, to notice a bit of beauty, a pleasurable experience, or even simply our ability to take a breath, is powerful and healing. Allowing pain and suffering to coexist with pleasure or joy may seem ridiculous to many — a baseless impossibility.  However, often those with chronic illness or those who have experienced loss and grief eventually come to this place of equanimity.

I was brought to this place with the death of my teenage son from cancer nearly two decades ago. Allowing myself to notice beauty while being surrounded by fear, anger, grief, pain and suffering seemed implausible.  But I also desperately wanted to escape from the vortex of despair. So I pulled out a forgotten notebook in a desk drawer and started to write a few words. I began slowly, going outside, trying to notice at least one thing each day that was beautiful, interesting, pleasant, surprising or ironic, then simply writing a few words of what I observed. This became my touchstone of equanimity.

Over the years I began to craft those few words of observation into haiku.

Why haiku? Because haiku invite observation and elicit thoughts and emotions that are grounded in the present. Haiku are micro poems that can be said in one breath yet profoundly express many aspects of the human experience. Haiku are healing for me, structured simply into three lines of 5 syllables, 7 syllables, 5 syllables a framework that is consistent when I am faced with so many other inconsistencies in my life. Haiku are meant to be shared — allowing the reader to understand them and feel them in their own way. There is never a wrong way to understand a haiku. Haiku writing helps me to connect with what is going right in the world when so much is also going wrong.

Since COVID-19, I have stepped up my haiku writing. I write and share a daily haiku on my blog and on Twitter using the hashtag #HaikuChallenge20. Since mid-March when I began posting my daily “pandemic poetry” folks from around the globe have shared their own micro-poems. In our isolation we are connecting around what we are observing.

If my medical students had asked me for advice in how to keep working in healthcare when one is continually witnessing so much pain and suffering, I would humbly offer this advice:

• Acknowledge your own pain and suffering as you care for others — this is not a sign of weakness but a recognition of compassion and empathy.
• Find ways to pause and check in with yourself throughout your day
• Learn to meditate, pick up a musical instrument, write a haiku
• Remain curious
• Seek out beauty, joy, or gratitude each day — and tell about it
• Keep your heart soft and your eyes open — its OK to be vulnerable

As we continue to navigate through these unsettled times, may we find a sense of resilience within the chaos, the ability to find equanimity in uncertainty, and the desire to write a haiku.

My name is Narinder Singh. I joined SPM in April. That’s my mom in the photo above.

Last year our family was caught by surprise when she had a completely unexpected and dramatic ICU stay of three months. We had a lot to learn fast and too little help, and when it was over we committed to help other families be engaged, informed, empowered patients.

We have decided to publish this as a four part series here on the blog of the Society for Participatory Medicine, including a downloadable PDF of the entire project. We want it to be a dynamic document, improving through your responses in the Comments section.

The series starts tomorrow. Please do contribute your thoughts and experiences.

This morning the New England Journal of Medicine released the latest publication about OpenNotes. The news: an innovative pre-visit form created for the “OurNotes” study has been released before the study is completed, for other providers to use to improve televisits during the pandemic. To access the form on the OpenNotes COVID-19 page shown above, click here.

The paper, Covid-19 as Innovation Accelerator: Cogenerating Telemedicine Visit Notes with Patients, describes a questionnaire that I myself got to use just last week in preparation for my annual visit with my PCP, SPM chair Dr. Danny Sands. I always try to be an engaged patient, but I found it was made easier by being given a structured way to prepare for my visit. So I can personally vouch for the usefulness of this approach, and I’m thrilled that it’s basically being made “open source” – they’re pre-releasing it for anyone to use … and expand and improve.

We’ve often blogged about OpenNotes, the practice of patients having access to what their providers write in the record after a visit – your so-called “visit notes.” OpenNotes goes back ten years, to when SPM co-founder Dr Danny Sands and I were guinea pigs in the very first OpenNotes study. (There are scores of OpenNotes papers now.)

The value of this questionnaire is amplified by the urgent need for televisits caused by the COVID-19 pandemic. It spotlights two different things that are important to patient engagement:

• Using technology to improve care (including access to visits in trying circumstances)
• the importance of pre-visit preparation …. which in turn requires staying on top of your issues between visits (the so-called “interval history”).

The featured graphic at top of this post is from the OpenNotes COVID-19 page, which includes a link to the downloadable form along with other advice – including staying informed between visits, and the world’s most comprehensive guide on how to stay safe during the pandemic. :-)

Here’s how it’s played out

One of my core principles for better care through patient engagement has always been “Make it easier to do the right thing.” Later I learned that this is also a core principle of behavioral economics, except they call it “choice architecture.” I speak from experience (my visit last week) when I say it works.

At bottom is Appendix 1 from the article, including both a patient’s and physician’s responses and the empty form itself (at the end).

Please think about this, in the context of your own care visits. Do you think back to what was discussed back then, and how it’s gone in the interval?

The combination of OpenNotes from the prior visit, and this questionnaire for the upcoming one, underscores how much more efficient and effective this visit’s time can be, when you spend it on actually addressing the progress of your issues, in continuity with your history. (I confess that there are times when I’ve forgotten to bring something up during a visit. Even if I handle it later in email, it’s an imposition on the provider’s time – and it probably won’t end up in the visit notes for next time!  I hate being the cause of a dropped ball, and this way of structuring a visit helps.)

The questionnaire arose as part of the OurNotes project

Some people thought OpenNotes was mind-blowing (patients reading doctor stuff???), but OurNotes takes it to the next level:

OurNotes: Explore the effects of notes co-produced by patients and clinicians working together, with the goal of improving health care value and patient safety. Pilot experiences with OurNotes are already highly promising, with both patients and clinicians signaling improved and more efficient care.

It’s a research project that’s been underway since 2017. The study’s not completed yet, so it’s a Big Deal in academic circles that the questionnaire is being released for anyone to use. Please spread the word – share that article and this post.

More about OpenNotes

OpenNotes is an international movement committed to spreading the availability of open visit notes and studying the effects. We believe that providing ready access to notes can empower patients, families, and caregivers to feel more in control of their healthcare decisions, and improve the quality and safety of care.

Things will never be the same

Many are saying things will never be the same after COVID-19 (if it ever ends), and I imagine that’s especially try for medical visits. Insurance is FINALLY paying docs for televisits (at last!!), and I’ve heard nothing but positive things about telehealth visits recently.

But think, too – telehealth time slots force us all to stick to a schedule, but is there any reason not to use this approach regardless of setting?  Seems to me it’s the way of the future.  Stay tuned.

Appendix 1
A Patient’s Pre-Visit Electronic Form and the Doctor’s Response

OurNotes pre-visit electronic form submitted by a patient: 

How have you been since your last visit? ← this section is the so-called “interval history”
BP has been pretty good: Feb 24 118 / 78, Mar 7 108/78, Mar 18 114/78. I was not feeling well all of Jan and Feb, cough/very low energy. Eventually got worse with fever, chills and came in – tested positive for flu. Chest X-ray was OK. Got Tamiflu. Feel much better now. BTW: I had been coughing for about 6 months, maybe more. Originally thought it was connected to meds, but I don’t cough at all now.

What are the most important things you would like to discuss at your visit?
is it possible to still get a flu shot?
should I get my potassium level checked?
renew prescriptions

Doctor’s response: (her note to other docs about this)

Day 1 of Telemedicine! Overwhelmed with trying to fit all the contents of a usual office visit into the time allotted, I was thrilled to see that one of my patients had completed her OurNotes entry! Because of this, I was able to “walk into” the visit with confidence in what lay ahead. I knew what her concerns were and what the focus should be. We had plenty of time to get to her “list” and also to my list of routine health care maintenance issues…and to chat about the COVID crisis and how we were each coping. What a difference from the other visits into which I “walked” unprepared! Emphasis added

Figure 1.  Pre-Visit Form

How have you been since your last visit?
For example, have you had any new symptoms, health worries, or life changes?  If possible, read your provider’s last opennote on PatientSite and tell us what has happened since then.
2,000 character limit (about 300 words)

What are the most important things you would like to discuss at your visit?  (List up to 3)
300 character limit  (about 50 words)
1.
2.
3.

If possible, please review your medication list in PatientSite. Is the list correct?
  If yes, go to the next question.
If no, what is wrong or missing?
Find your medication list in PatientSite by going to “Records” on the left side of your screen, then click the “Meds” tab near the top.
300 character limit

Do you need any prescriptions renewed?
If no, go to the next question.

If yes, which medication(s)?
 300 character limit

Which pharmacy should the renewal prescriptions go to?
300 character limit

If you have equipment at home, please fill in as many of the following measurements as you can.
If you can’t fill this in, don’t worry.
Weight
Temperature
Blood pressure
Heart rate
Blood glucose 

Thank you for helping us prepare for your visit!