STROKE 2023 (Australia): Putting the spotlight on Lived Experience

If your stroke conference doesn't have stroke survivors speaking it's totally worthless.  Hell, I'll fly anywhere and you'll be entertained by my speaking.

 

STROKE (Australia): Putting the spotlight on Lived Experience

A Fresh Perspective on Conferences

Having experienced my fair share of scientific conferences (see my posts: "STROKE 2018" & "UK Stroke Forum") and being deeply entrenched in the world of stroke survivorship through Genyus Network, I can confidently say that most gatherings can be a tad monotonous. These events often sideline the crucial narratives of those of us who've navigated life following life-altering trauma. While the spotlight tends to illuminate prevention and clinical management, the profound stories of survivors usually remain in the shadows. But then, STROKE 2023 has emerged – the combined annual conference of the Stroke Society of Australasia and Smart Strokes – and it brought a breath of invigorating change.

Saran Chamberlain: Illuminating Lived Experience

This year's conference launch was groundbreaking, and much of this credit goes to Saran Chamberlain. An astute businesswoman, a resilient stroke survivor, a Genyus Network member, and now a superstar speaker, Saran took the stage as the first individual with lived experience to address the entire delegate community. By offering glimpses of her journey, she altered the focus of the conference narrative, casting light on the invaluable contribution of lived experience and the transformation she envisions for the realm of research. Saran's presence marked the commencement of a conference that championed lived experience – and by the end of the opening session, I have no doubt that the value of people with lived experience was on the minds of everyone watching.

Dedicated to Engagement

A substantial part of the day was dedicated to immersing ourselves in the realm of lived experience engagement. The execution was awesome, whether from researchers or resilient survivors themselves. Adrian O'Malley, a dedicated father, formidable survivor, and stroke warrior, joined forces with Karly Zachariah, a one-time pop star turned research-focused dietitian. Together, they led a workshop that unveiled the unique power of lived experience in research. The ensuing discussions were robust, establishing a safe haven where fellow survivors could candidly share their stories. There's an undeniable strength in openly expressing vulnerability, testifying to the secure space that was carefully cultivated.

Heartfelt Research: Elevating Lived Experience

As the day progressed, a series of presentations took centre stage, spanning both researchers and those living the experience themselves. The common theme revolved around the monumental significance of involving individuals who've navigated a similar path. The focus was clear – how can this engagement amplify the lives of those with lived experience through meticulous research? The authentic dedication to this cause felt new and inspiring.

Brenda's Guidance, Saran's Encore and Julie's Win

Standout moments were Brenda Booth stepping up to co-chair sessions and Julie Davey taking out the prestigious award for Lived Experience Engagement in research; both are valuable members of Genyus and exude wisdom honed through their vast lived experience and expertise. Saran Chamberlain took the stage once again, this time delving into a research project in collaboration with Liz Lynch. Their candid account of the hurdles and successes in forging a meaningful partnership was genuinely motivating. It underscored the power of collaboration, delivered with an unfiltered authenticity that resonated deeply.

Prominent Presenters: Julie Bernhardt and Brooke Parsons

Among the vibrant array of voices, the insights shared by Professor Julie Bernhardt and Brooke Parsons (lived experience expert), both deeply connected to lived experience research, were significant highlights. Their contributions enriched the day, shedding light on the intricate intersections of research, rehabilitation, and firsthand experiences. Julie's commitment to enhancing outcomes for brain injury survivors struck a chord, and Brooke's survivor perspective added depth and authenticity to the discourse.

Impressive Insights from Newcomers & Seasoned Pros: Professor Natasha Lannin, Dr. Laura Jolliffe and Dr. Dana Wong

Jasmine West, Matthew Berryman, fresh additions to the Genyus family, along with Michael Maher, who aptly refers to himself as the Disabled CEO (or BOSS BOY), also brought impressive insights to the table. Their perspectives injected new vitality into both Genyus Network and the world of stroke survivors, showcasing the power of innovative ideas, fresh voices and candid conversations. Further shoutouts to Professor Natasha Lannin and Dr. Laura Jolliffe for their robust contributions and expert chairing by Dr. Dana Wong. Their expertise, insights and sincere engagement elevated my conference experience, creating an engaging and dynamic atmosphere that left a lasting impact on all attendees.

A Personal Meeting with Professor Lisa Kidd

An additional highlight for me was a 1-1 meeting with a luminary in nursing research, Professor Lisa Kidd. Our four-hour conversation delved into our shared values, visions, and our respective missions in Scotland and Australia. It was exhilarating to witness Lisa's fervent belief in our peer-led approach at Genyus Network. Our discussions ignited the sparks of future collaboration, promising to amplify the impact of lived experience even further.

A Catalyst for Transformation

From dawn till dusk, the room buzzed with energy, a testament to the environment carefully cultivated by the organising committee and the unyielding support of the Stroke Foundation. This event transcended mere scientific metrics; it became a catalyst for profound change and as Adrian championed "We are not going back. This is the new black.". It demonstrated that research isn't just about statistics but about weaving tangible threads of impact into the lives of those who confront the living challenges of stroke.

STROKE 2023: Beyond being a conventional conference, it evolved into a powerful platform that celebrated lived experiences, ignited collaborative fires, and instilled hope for a more inclusive future. As I reflect on it all, I'm reminded that the voices of those who've triumphed through life's trials aren't merely part of the conversation – they are the essence of the conversation itself.

Who should be included in health care conferences?

Well obviously in stroke conferences there is no point in including survivors, they know nothing and just get in the way.  No one from any part of the stroke medical world has ever contacted me. I'm thinking they are afraid of me.
https://www.symplur.com/blog/who-should-be-included-in-healthcare-conferences/?utm_source=Connecting+the+dots+in+healthcare+social+media&utm_campaign=5c457de34e-Who+should+be+included+in+health+care+conferences%3F&utm_medium=email&

Julia JamesSeptember 27, 2017

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Patients, when represented as event stakeholders, generate richer conversation and wider dissemination of information on the social web, a new Medicine X study shows.
It was June 2016, and Audun Utengen and Larry Chu were in Washington where Medicine X was co-hosting a workshop as part of President Obama’s Precision Medicine Initiative. The focus was on patient-centered research, and the two kept hearing the same frustration aired by participants: Why are health care conferences generally accessible only to stakeholders from industry and academia? Given their purpose — to disseminate information, to facilitate networking, to get people talking — wouldn’t it make sense to involve patient communities as well?
Utengen, a co-founder of the social media analytics firm Symplur, took the question seriously. Would it make sense? Do conferences that include patients generate richer, wider conversation than their more restrictive counterparts?
With Medicine X researchers including senior author Larry Chu, MD and ePatient Nisha Pradhan, he designed a study to find out. The results, as measured by social activity and published in August in the Journal of Medical Internet Research, added up to a straightforward answer: Yes.
The team reviewed more than 7.5 million tweets from 1,672 conferences registered in the Symplur Healthcare Hashtag Project between 2014 and 2016. They then identified the 100 most influential participants taking part in the conversation around each event, sorted them into six stakeholder cohorts (engaged patient, physicians and researchers, non-physician health care professionals, journalists, other health care individuals, pharmaceutical organizations, etc.) and assessed performance of these cohorts against each other.
Patients, they found, outperformed their representation. While they made up only 1.4 percent of the stakeholders identified as conversation influencers, they did more than the doctor / researcher cohort, which made up 16.9 percent of influential stakeholders, to increase information flow and propagation, and — perhaps more importantly — to deepen engagement.

“Health care conferences that fail to engage patients in their proceedings as meaningful participants may risk limiting their engagement with the public, disseminating science output to a narrow community and slowing flow of information across social media channels, to the detriment of their academic missions,” the study concludes.

While the research team hasn’t addressed the follow-up question— Why? — they have several theories.

“We’re all humans, and we relate to stories,” Utengen says.

Patients, just by having a presence, can make conversations more real. They speak a language earned by experience, not by degree. And they force researchers to be more deliberate in their own choice of words, to communicate their research in a way that makes it accessible, and meaningful, to a wider audience.
More than 2,200 conferences registered hashtags with Symplur during 2016, and Utengen expects the number to be higher this year. He hopes the findings from this study will help patients make the case for their inclusion, even at highly specialized events with limited budgets.
Organizers, presenters, sponsors — they all have shared goals around reach and engagement, and promoting patient voices appears to be a relatively cheap and efficient way of achieving them.

“We can’t see how this is not a good thing for everyone,” he says.

Read the full research paper in JMIR.

2017 IEEE-RAS-EMBS International Conference on Rehabilitation Robotics July 17-20, 2017, QEII Centre, London, UK

Your doctor has a lot of followup to do to to incorporate this information into your stroke protocols.  You better hope your doctor is the one in a million that gets this all right. Or maybe your doctor will DO NOTHING  because s/he is waiting for SOMEONE ELSE TO SOLVE THE PROBLEM? The solution to this overload of research is simple, that great stroke association takes all these and updates the stroke protocols publicly available in a database. 
The following were presented at the conference;
A Pilot Study on the Optimal Speeds for Passive Wrist Movements by a Rehabilitation Robot of Stroke Patients: A Functional NIRS Study

Clarification of Muscle Synergy Structure During Standing-Up Motion of Healthy Young, Elderly and Post-Stroke Patients

A Novel Pneumatic Stimulator for the Investigation of Noise-Enhanced Proprioception

Simulating the Impact of Sensorimotor Deficits on Reaching Performance

Position and Torque Control Via Rehabilitation Robot and Functional Electrical Stimulation

Codification Mechanisms of Wrist Position Sense

There Is Plenty of Room for Motor Learning at the Bottom of the Fugl-Meyer: Acquisition of a Novel Bimanual Wheelchair Skill after Chronic Stroke Using an Unmasking Technology

The Combined Action of a Passive Exoskeleton and an EMG-Controlled Neuroprosthesis for Upper Limb Stroke Rehabilitation: First Results of the RETRAINER Project

Maintaining Subject Engagement During Robotic Rehabilitation with a Minimal Assist-As-Needed (mAAN) Controller

Feedforward Model Based Arm Weight Compensation with the Rehabilitation Robot ARMin

Movement Therapy without Moving – First Results on Isometric Movement Training for Post-Stroke Rehabilitation of Arm Function

Application of Support Vector Machines in Detecting Hand Grasp Gestures Using a Commercially Off the Shelf Wireless Myoelectric Armband

Leap Motion Evaluation for Assessment of Upper Limbs Motor Skills in Parkinson's Disease

Improving Robotic Stroke Rehabilitation by Incorporating Neural Intent Detection: Preliminary Results from a Clinical Trial

Design of Continuous EMG Classification Approaches towards the Control of a Robotic Exoskeleton for Reaching Movements

Development of Elbow Spasticity Model for Objective Training of Spasiticy Assessment of Patients Post Stroke

A Multichannel-Near-Infrared-Spectroscopy-Triggered Robotic Hand Rehabilitation System for Stroke Patients

How Do Strength and Coordination Recovery Interact after Stroke? a Computational Model for Informing Robotic Training

Computational Rehabilitation of Neglect: Using State-Space Models to Understand the Recovery Mechanisms

The Effects of Silent Visuomotor Cueing on Word Retrieval in Broca’s Aphasics: A Pilot Study

MIT-Skywalker: On the Use of a Markerless System

Design of an Exoskeleton Ankle Robot for Robot-Assisted Gait Training of Stroke Patients

A Novel Robot-Assisted Training Approach for Improving Gait Symmetry after Stroke

A Generalized Framework to Achieve Coordinated Admittance Control for Multi-Joint Lower Limb Robotic Exoskeleton

The Effect of Haptic Interaction between Balance Assessment Robot and Pelvis on Muscle Activation of Leg Muscles

Research of the BWS System for Lower Extremity Rehabilitation Robot

Autonomous Hip Exoskeleton Saves Metabolic Cost of Walking Uphill

Biomechanical Effects of Robot Assisted Walking on Lower Limb Joint Kinematics and Muscle Activation Pattern

Development of an Automatic Rotational Orthosis for Walking with Arm Swing

Toward Goal-Oriented Robotic Gait Training: The Effect of Gait Speed and Stride Length on Lower Extremity Joint Torques

The Influence of the Re-Link Trainer on Gait Symmetry in Healthy Adults

Design and Experimental Evaluation of a Lightweight, High-Torque and Compliant Actuator for an Active Ankle Foot Orthosis

Comparing Neural Control and Mechanically Intrinsic Control of Powered Ankle Exoskeletons

Motor Adaptation to Lateral Pelvis Assistance Force During Treadmill Walking in Individuals Post-Stroke

Development of New Rehabilitation Robot Device That Can Be Attached to the Conventional Knee-Ankle-Foot-Orthosis for Controlling the Knee in Individuals after Stroke

Walking Speed Intention Model Using Soleus Electromyogram Signal of Nondisabled and Post-Stroke Hemiparetic Patients

Developing Safe Fall Strategies for Lower Limb Exoskeletons

Timing of Intermittent Torque Control with Wire-Driven Gait　 Training Robot Lifting Toe Trajectory for Trip Avoidance

Using Wearable Physiological Sensors to Predict Energy Expenditure

Preliminary Assessment of a Lower-Limb Exoskeleton Controller for Guiding Leg Movement in Overground Walking

Effects of Partial Body-Weight Support and Functional Electrical Stimulation on Gait Characteristics During Treadmill Locomotion: Pros and Cons of Saddle-Seat-Type Body-Weight Support

An Optimized Design of a Parallel Robot for Gait Training

Active Impedance Control of a Knee-Joint Orthosis During Swing Phase

An Assistive Lower Limb Exoskeleton for People with Neurological Gait Disorders

Design and Evaluation of a Modular Lower Limb Exoskeleton for Rehabilitation

Comparison of Kinematic and EMG Parameters between Unassisted, Fixed and Adaptive-Stiffness Robotic-Assisted Ankle Movements in Post-Stroke Subjects

Gait Assessment System Based on Novel Gait Variability Measures

    

                                           

“Patients Excluded” health care conferences

Considering that there are 10 million stroke survivors every year every stroke conference should be able to find at least a dozen candidates that can talk at them. If you are a stroke conference organizer and can't find survivors you don't know how to look, or maybe you don't want to hear patient experiences. You'd rather stay in your bubble not hearing about non-recovery of stroke survivors.
https://myheartsisters.org/2013/12/17/we-are-all-patients/
17 Dec

by Carolyn Thomas  ♥ @HeartSisters
I read recently about a conference on breast reconstructive surgery following mastectomy, to which not one single Real Live Patient who had actually undergone breast reconstructive surgery following mastectomy was invited to participate. This is, sadly, yet another example of “Patients Excluded” health care conferences – in stark contrast to the growing number of notable conferences that have garnered the “Patients Included” designation.*
The result of attending a “Patients Excluded” conference is just as you might imagine: hundreds of people working in healthcare getting together to talk at each other about caring for people who aren’t even at the table. Or, as one physician arguing for  “Patients Excluded” conferences protested online:

“I already hear patients’ stories all day long in our practice. Why should I have to listen to more stories at my medical conferences?”

Sara Riggare, a Swedish engineer, blogger and PhD student living with Parkinson’s disease, calls the trend toward Patients Included health conferences a type of ‘to-for-with’ model: going from doing things TO the patient, then doing things FOR the patient, to finally doing things WITH the patient.
In some circles, however, there appears to be little tolerance for hearing the patient voice at conferences – or elsewhere. Many experts who work in health care – either as providers, administrators or entrepreneurs – defend this exclusionary practice by insisting that, after all, we are all patients anyway at some time or other in our lives.
That insistence immediately tells you something important about the maker of such a statement, namely: they’re not patients.
What they may have been at some point in the past was a person who sees a doctor or goes into hospital for diagnosis/treatment defined as acute care medicine (broken bones, pregnancy complications, strep throat, ruptured appendix, knee surgery, etc).  Coincidentally, I’ve experienced each of these (temporary) conditions, which means I have some clue about what it’s like being on the receiving end of acute care.  During each incident, I was indeed a patient, but under relatively short-term treatment.
In acute care, as I like to describe it, you get sick, you get treated, you get better – and then you thank your brilliant doctor.
The term is defined as a branch of secondary health care in which a patient receives active but short-term treatment for an injury or episode of illness, an urgent medical condition, or during recovery from surgery.
So when I was discharged from hospital after a one-month stay being treated for near-fatal cases of ruptured appendix and peritonitis (both emergent acute care conditions), I never gave my appendix another moment’s thought after that.  Ever.
I became, quite simply, no longer a patient.
In fact, I propose that acute care is NOT, despite the claims of those “We-are-all-patients” folks, what actually being a patient is about at all, as I discovered only after being told I have “significant heart disease” in 2008. Significant heart disease, as I was soon to learn back then, is known as a chronic and progressive condition.
The pain and debilitation of being acutely ill can get better. The pain and debilitation of being chronically ill can last forever. In fact, many living with chronic illness feel terrible. Every. Single. Day. And while those receiving acute care can expect that feeling temporarily terrible will gradually diminish, in chronic care we often live with the chilling reality that it feels terrible now, and it’s likely to get even worse over time.

Acute care medicine is not the same as chronic care medicine, and thus acute care patients are not the same as chronic care patients.
And equally important, not all those living with a chronic illness are the same as all others with chronic illness – yes, even those with the same diagnosis.
Just as I do not and could not ever pretend to represent the experiences of all other heart attack survivors, those who make sweeping statements about “what patients need” or “what patients want” cannot possibly be speaking on behalf of all patients lumped together as if we’re one big homogenized voting bloc.
And this is as true for chronically ill patients of differing diagnoses as it is for those sharing an identical diagnosis.
Dave de Bronkart is more widely known in conference speaking circles as “ePatient Dave“. He’s also the co-author, with Dr. Danny Sands, of Let Patients Help: A Patient Engagement Handbook. After beating stage IV kidney cancer in 2007, he became a blogger, health policy advisor and international keynote speaker representing the patient voice at health care conferences. Yet as Dave himself wrote last March:

“People need to remember that although I advocate FOR listening to patients, I myself am only one – and I was only sick for six months. Every time there’s a patient panel, the audience experience broadens and improves – but I should never be the sole patient voice.”

After he recently spoke at a conference in Belgium during which “real patients and families” delivered what he described as “a punch in the gut – genuine suffering portrayed for real,” Dave had this advice for conference organizers in his response to a Susannah Fox blog post:

“Want to know if you have Patients Included? Ask this: ‘Are there any actual sick people in the room?‘

“I’ve become wary of myself in many ways, since I’m no longer sick. Even I know it makes a big difference when there are actual sick people involved.”

He also offered this example to those who insist: “We’ll all be patients someday”:

“I can tell you first-hand – no, that doesn’t work.

“Until you’ve actually had your life on the line, until you’ve had a diagnosis that stops you in your tracks, knowing your life will never be the same – until then, you don’t KNOW what it is to be in need, to really need help. And support. And care.

“No, damn you; no, we are NOT ‘all patients’. It makes a DAMN BIG DIFFERENCE when there are ACTUAL SICK PEOPLE in the room.

“Until your life changes like this, you DON’T KNOW!”

And as Dave reminded me recently, this quotation by Ed Roberts (a leading figure in the international disability rights movement) sums it up nicely:

“If we have learned one thing from the civil rights movement in the U.S., it’s that when someone else speaks for you, you lose.”

But just as industries like Big Pharma are co-opting the growing interest in patient engagement, some non-patients are now co-opting patient status by repeatedly insisting that they, too, are patients – just like the ones they’re paid to work with or write about.
In reality, these non-patients are no more qualified to speak for patients than I was when I worked in hospice palliative care. Even many years spent seeing very ill people lying in hospice beds was simply not the same as knowing anything whatsoever about what it’s actually like to be those people, nor was that experience even remotely adequate as prep for my future role as a patient myself.
Experts known as population health managers are those who work on improving the systems and policies that affect our health care quality, access and outcomes. These experts typically describe three basic types of patients living with chronic illness:

1. the high-risk patient (living with at least one complex condition, multiple co-morbidities, and psychosocial issues; about 3-5% of all patients)
2. the rising-risk patient (living with multiple risk factors that could push them into the high-risk category if left unaddressed, such as a patient with diabetes, a sleep disorder, and high blood pressure; about 20%)
3. the low-risk patient (living with a relatively well-controlled chronic condition; about 75%)

But even among these three broad categories, you’ll find people within each group who live very different lives compared to their similarly-diagnosed fellow patients. For example – depending on their type of myocardial infarction and the degree of their resulting heart muscle damage – you’ll meet heart attack survivors who recuperate uneventfully, return to work, run marathons, feel great, and check in with their cardiologists only for a friendly annual follow-up chat. See also: Which patients does the “patient voice” represent?

At the same time, you’ll meet heart attack survivors with ongoing cardiac issues who are no longer able to work ever again, who live a much-diminished life compared to their pre-MI days because of their symptoms, and who become the frequent flyers of the health care system.
You might also meet the family caregivers of the seriously ill. These are the heroic individuals who, because of the intensity of their day-to-day caregiving relationships, can speak on behalf of their loved ones in a way that no paid health care provider or industry entrepreneur or population health manager could ever claim to.
These unpaid caregiver/advocates may not be patients themselves, but they are indeed the next closest thing, and their voices matter.

Meanwhile, if you work in health care and you still believe the “We are all patients” myth, I offer some useful tips for you here. To help you grasp the difference between a bona fide patient and somebody who just gets paid to talk about patients – here’s a handy-dandy list thanks to Casey Quinlan, author of Cancer For Christmas: Making the Most of a Daunting Gift, writing on the role and status of “the patient”:

• it can be a role that comes and goes, and returns, different from before, or similar
• it can be part of your identity – something felt and lived strongly, or coexisting quietly – and can develop and change
• it can be a view others have toward you, whether you share their view or not
• it can mean you’re highly dependent on others (anesthetized for surgery) or highly independent (self-managing) or co-dependent (co-managing)
• it can be visible or invisible to others depending on what and how you share your experiences, and it can complement or clash with work that you do – or be irrelevant to any work you do

So if you don’t recognize yourself in any of these categories, then please stop saying: “We are all patients”. 
Because you’re not.