Patient impact in research.

Through their experience of living with a health condition, patients gain experiential knowledge that no one else has. Researchers working in health research typically lack this knowledge, but often don’t know what they’re missing. Researchers’ decisions can be biased, because of the gaps in their knowledge and the assumptions they make. By involving patients in their research, researchers learn from other people’s experience, which then changes their own thinking, values, choices, and actions. This leads to the commonly reported outcomes of involvement—improved research design, delivery, and dissemination—and over time, the wider impacts of a changed research culture and agenda.

These crucial moments of learning in conversations—“the light bulb moments”—ultimately lead to more relevant research. For example, through dialogue with patients, a group of researchers aiming to identify the socioeconomic impacts of carpal tunnel syndrome, realised that their proposal didn’t consider patients’ working lives. They then changed their protocol, so that their research would generate findings that were more meaningful to patients. Before they entered that conversation with patients, those researchers didn’t know what they were about to learn. It was specific to them and their project. Other researchers may not have started with the same gap in their thinking and may have learnt something different from a similar interaction. This means that for researchers, the experience of involvement is subjective and the outcome unpredictable.  

In the area of patient and public involvement in research, the value of patients’ experiential knowledge, and the difference between involving patients and studying them is understood. But as yet, the same value hasn’t been attributed to researchers’ experiential knowledge and their personal accounts of the insights they gain through involvement. All too often researchers dismiss these as anecdotal and state the need for robust evidence of impact i.e. empirical data. Measuring the impact of involvement has become the Holy Grail, but if the focus is purely on objective, observable outcomes, a lot can be missed.  

There seems to be an assumption that if there was empirical evidence of the impact of patient involvement in research, then the researchers who are still sceptical about involvement would be persuaded to try it, and then they’d be hooked. The researchers who experience a light bulb moment are the ones who say they’ll never do research without involvement again. But who’s ever been persuaded to go on a rollercoaster by the physics? People are more often convinced to try new experiences by hearing about them from someone else, especially someone they know and trust. Telling a story is one of the most powerful forms of communication. If we want researchers to change what they do, might stories from their peers be more influential than an RCT?

By focusing on how patient involvement objectively improves research (e.g. through better recruitment, information sheets, etc.), there’s also a risk of creating unmet expectations. For example, a researcher who took his information sheet to a patient panel expecting them to make it clearer, instead received feedback that was entirely about his choice of research method. It’s not possible to predict which problems or issues patients might identify or fix ahead of time, only that researchers will learn from the experience of involvement. Perhaps it might be more helpful to explain to researchers what involvement will do for them e.g. how it will stimulate new ideas, challenge assumptions, identify problems and solutions, and increase their confidence and motivation?

Another assumption seems to be that empirical evidence is important to convince other stakeholders of the value of involvement. For example, funders who have invested heavily in patient involvement might reasonably ask “What difference is this making?” Collecting hundreds of different stories of learning experiences might not be practical or informative here. But focusing on what can be objectively measured might not provide the expected insights either.

Perhaps the most important question to answer is “What do we want patient involvement to achieve?” Then we can work backwards to agree how best to evaluate its success. The commonly stated goal of patient involvement is to change the research agenda, so that research findings will genuinely help patients and improve their lives. This might require empirical investigation or it might not. One of the easiest ways to do this might be to simply ask the patients for their views.

A Head of Stroke” is dedicated to those affected by Stroke re-contributing to their community.
Dedicated to those affected by Stroke re-contributing to their community.Our aim is to provide impartial educational information on Stroke prevention, awareness, the effects, rehabilitation, re-connection, tips and tricks that can benefit those most affected by Stroke. 

This is a New Zealand website. Its content is intended for New Zealand residents use.

This website does not provide medical advice. Information provided on this site is not designed or intended to constitute medical advice or to be used for diagnosis. Due to unique individual needs and medical history, please consult your own personal physician who will be able to determine the appropriateness of the information for your specific situation and they will assist you in making any decisions regarding treatment and/or medication.

FAST campaign increases stroke awareness


FAST campaign increases stroke awareness

Health Minister Jonathan Coleman says a nationwide stroke awareness campaign has seen more New Zealanders reporting suspected strokes.

“Each year in New Zealand around 9,000 people have a stroke. Early identification and treatment are crucial to reduce the likelihood of brain damage and lasting harm,” says Dr Coleman.

“The successful FAST campaign returned to teach a simple message about how to recognise stroke symptoms, and the need to ring 111 fast.

“FAST stands for Face, Arm, Speech and Time (to call 111) – sudden changes to a person’s face such as drooping, loss of arm strength or impaired speech could all be warnings that they’re experiencing a stroke.

“It is important that campaigns like this can demonstrate they build awareness over time, and not just when they are running.

“The first campaign in 2016 increased calls for suspected stroke incidents to St John Ambulance by around 40 per week.

“During the most recent campaign, the average suspected stroke incidents recorded by St John rose from 160 to 196 per week which is an increase of 22 per cent – peaking at 231 incidents a week.

“Likewise, the average number of ambulance call-outs per week confirmed as strokes increased from 45 before the campaign, to 52 in July.

“This is all good news and it shows that as a result of the FAST campaigns more people recognise suspected strokes.

“St John advises that while all incidents weren’t necessarily strokes, they prefer people err on the side of caution and call 111 if they suspect a stroke at all.

“More will be known about the impact of the 2017 FAST campaign after a full evaluation is completed.”

The successful three-month multi-media campaign was funded by the Ministry of Health. It was developed and supported by the Health Promotion Agency and Stroke Foundation.

Coaching after a Stroke

More than 20 years ago, my husband Paul suffered a devastating stroke. Paul was 36, I was 31. My good friend and supporter was in need. Suddenly, in addition to my full-time job and daily responsibilities, I found myself overwhelmed by taking care of my husband’s responsibilities, personal needs and health. I worried a lot and the care giving took its toll. I stopped taking care of myself. I got too little sleep, drank too much coffee and ate too much comfort food. I became dis-organised, tired and unmotivated. I gained weight and my overall self-esteem plummeted. I needed help. My goals were to find a new job and to get my physical and emotional health back on track. Working with several professional coaches, I went about doing just that.


Career Coaching

Knowing that a new job, at a higher level of management, would increase my self-worth and lighten my mood, I hired a career coach. Career coaches specialise in helping people gain clarity, direction and self-confidence while facing the challenges of career and life transitions. I needed direction and that is just what I got. My coach listened to me, then gave me assignments, deadlines, constructive feedback and support. As a result of her coaching and my newfound determination my career took off again.

Dietary Coaching

Frustrated by my ever-increasing weight and cholesterol, I went to my doctor. He asked, “do you want a lecture or a nutritionist?” I chose the nutritionist. My nutritionist helped me understand portion size and the effect of different foods on my health, stamina and mood. She coached me on eating healthy in all circumstances eating at home, eating out and eating while traveling for business or working late. Every time I reached for a cookie, I saw her face and I didn’t want to report that I hadn’t stuck to my goals for the week. That was my secret to losing more than 35 pounds.
Emotional Wellness Coaching

As I am writing this, I am looking at a handwritten note taped to my computer: “Reminder: done is better than perfect.” My friend and licensed mental health counsellor wrote this to help me overcome one of my personal, emotional issues — being a perfectionist. I am very hard on myself and often worry and feel guilty for not doing enough. Many caregivers have to come face to face with their own emotional issues. Find a licensed mental health counsellor in your area


Working with these coaches has changed my life. They helped me make caring for myself a priority. Now I feel good about myself, about my husband and about my life. Instead of being “the caregiver” and “the survivor,” we have returned to being two individuals who simply value each other.
Resources Link to hundreds of free self-coaching articles and tips: http://www.selfgrowth.com/

Coaches Orders

8 tips to help caretakers reduce stress and care for themselves:

  • Take breaks throughout the day, close your eyes and visualize something pleasant for a moment.
  • Breathe deeply.
  • Exercise regularly.
  • Add healthy foods and reduce sugar intake.
  • Listen to soothing music.
  • Laugh more.
  • Participate in a hobby or recreational activity.
  • Write down your feelings in a journal or talk to a trusted friend.

aheadofstroked03ar03ap01zl_icon-washington3a_sml1.jpgA Head of Stroke” is dedicated to those affected by Stroke re-contributing to their community.

We aim to provide impartial educational information on Stroke prevention, awareness, the effects, rehabilitation, re-connection, tips and tricks that can benefit those most affected by Stroke. This is a New Zealand website. Its content is intended for New Zealand resident use.

This website does not provide medical advice. Information provided on this site is not designed or intended to constitute medical advice or to be used for diagnosis. Due to unique individual needs and medical history, please consult your own personal physician who will be able to determine the appropriateness of the information for your specific situation and they will assist you in making any decisions regarding treatment and/or medication.

Mediterranean diet can reduce your Stroke and CVD risk.

New research says a Mediterranean diet high in fresh fruit and veges can reduce the risk of heart attack and stroke by one third. Photo / Getty
New research says a Mediterranean diet high in fresh fruit and veges can reduce the risk of heart attack and stroke by one third. Photo / Getty

New research suggests a Mediterranean diet could help in the fight against stroke and heart disease.

The Auckland study, which has caught the eye of international news giant CNN, found a diet high in fruits, vegetables and fish might help reduce the risk of heart attack and stroke in people who suffer from heart disease.

The study examined 15,000 people around the world, with an average age of 67, and stable heart disease.

Study author Professor Ralph Stewart from Auckland Hospital said the risk of heart attacks, strokes or death from heart disease was reduced by about one-third for those who followed a Mediterranean diet, according to the CNN report.

Stroke Foundation of New Zealand CEO Mark Vivian said there are valuable lessons for locals in the study.

“This underlines the message we, and other health agencies, have been promoting for some time – that a healthy diet can have a significant influence on your life and well-being,” he said.

“And all the ingredients for a healthy diet can be found right here in New Zealand.”

Around 9000 New Zealanders suffer a stroke every year, a number that could be significantly reduced with such better lifestyle choices as a healthy diet, regular exercise, giving up smoking and cutting down on alcohol consumption.

The study’s findings also suggest that adopting a healthier diet was better for people with heart disease than simply cutting out bad food.

“It’s easy to think of cutting out the bad stuff in our diet – but we need to make sure we aren’t replacing it with something equally unhealthy,” Mr Vivian said.

“You can’t go wrong with lots of different fruit and vegetables, fresh fish, and unprocessed foods low in sugar and salt.”


Longer term care is needed for Stroke Survivors

This article written by Lisa O’Neill Hill in the recent edition of Stroke Smart highlights an issue that has been bubbling under the surface in the long-term palliative & rehabilitative care of stroke patients.This is an international issue that requires greater consideration and a closer focus to establish more effective, cost effective solutions.

More people are surviving strokes and heart attacks, but survivors’ ability to take care of themselves quickly decreases over time.

Many stroke and heart attack survivors have trouble taking care of themselves in the decade after their medical emergency, the new study found. This includes needing help with dressing, bathing, grocery shopping, and handling their finances.  These challenges get bigger each year and many survivors need long-term help with daily activities.

The study, led by the University of Michigan, also found that stroke survivors are at a higher risk of depression and memory loss. The findings recently were published in Circulation: Cardiovascular Quality and Outcomes.

Over 10 years, stroke survivors gained between 3.5 and 4.5 problems with performing daily tasks, the study found.

Stroke Rehabilitation Affects Long-term Outcomes

The findings shed light on the need for effective and consistent rehabilitation after a stroke or a heart attack and show that long-term care needs for survivors may be greater than experts thought.  A recent study published in the Journal of Rehabilitation Medicine found that numerous factors affect the delivery of stroke rehabilitation, including an appropriate therapeutic environment, where patients aren’t bored and isolated, and a team approach to care.

The University of Michigan study included 370 stroke survivors and 391 heart attack survivors; researchers studied Medicare records from 1998 to 2010 and from a national survey of older Americans funded by the National Institute on Aging.

“Our findings suggest that heart attack and stroke survivors should be screened and monitored for functional disability long after discharge from the hospital because patients may need additional help with activities of daily living over the years after heart attack and stroke,” senior author Theodore Iwashyna, M.D., Ph.D. associate professor of internal medicine at the U-M Medical School and researcher in the Institute of Social Research and the VA Centre for Clinical Management Research, said in a press release.

More Research Needed?

Researchers said their findings show that healthcare professionals need to understand why this is happening and look at, among other things, whether patients received incomplete rehabilitation while hospitalized.

Each year in New Zealand, 2500 people survive strokes but that number is expected to increase by 25 percent over the next two decades. That’s because of advancements in treatment and an aging population. But as these numbers increase, the number of caregivers for older adults is expected to decrease dramatically in the same period of time.

Stroke recovery in mice improved by Ambien, study shows

Date: December 18, 2015

Source: Stanford University Medical Center

Summary: Mice that had strokes rebounded significantly faster if they received low doses of a popular sleeping aid, according to researchers. Zolpidem, better known by the trade name Ambien, has long been approved by the U.S. Food and Drug Administration for treating insomnia. But it has never before been definitively shown to enhance recovery from stroke

Mice that had strokes rebounded significantly faster if they received low doses of a popular sleeping aid, according to researchers at the Stanford University School of Medicine.

More than 40 percent of stroke survivors have reported limited success in meeting their rehabilitation goals, which include the ability walk better and regain their speech

Zolpidem, better known by the trade name Ambien, has long been approved by the U.S. Food and Drug Administration for treating insomnia. But it has never before been definitively shown to enhance recovery from stroke, said Gary Steinberg, MD, PhD, professor and chair of neurosurgery. Steinberg shares senior authorship of the study, which will be published online Dec. 18, 2015 in Brain, with senior research scientist Tonya Bliss, PhD.

Steinberg, the Bernard and Ronni Lacroute-William Randolph Hearst Professor in Neurosurgery and the Neurosciences, cautioned that the study’s results need to be independently replicated in other laboratories before clinical trials of the drug’s capacity as a stroke-recovery agent can begin.

Every year, Americans incur about 800,000 strokes, the nation’s largest single cause of neurologic disability, exacting an annual tab of about $74 billion in medical costs and lost productivity.

A stroke’s initial damage, which arises when the blood supply to part of the brain is blocked, occurs within the first several hours. Drugs and mechanical devices for clearing the blockage are available, but to be effective they must be initiated within several hours of the stroke’s onset. As a result, fewer than 10 percent of stroke patients benefit from them.

After a few days during which tissue death continues to spread to adjacent brain regions due to repercussions from the initial damage, the brain begins slowly rewiring itself and substituting new neural connections for those destroyed by the stroke. Within three to six months, at least 90 percent of all the recovery a stroke patient is likely to experience takes place. No pharmaceutical therapy has been shown to improve recovery after the stroke. In fact, no effective treatments during the recovery phase exist, other than physical therapy, which has been shown to be only marginally successful.

Nerve-cell signaling bolstered

Steinberg and Bliss attributed zolpidem’s effectiveness to its enhancement of a type of nerve-cell signaling activity whose role in recovery unexpectedly appears beneficial. In the study, this signaling was bolstered even though the drug was given at doses well below those at which it exerts its hallmark sedative effect.

Nerve cells signal to one another by means of substances called neurotransmitters. When neurotransmitters are secreted by the nerve cell sending the signal, they dock in receptors situated on abutting nerve cells’ surfaces. Most of this signaling takes place at specialized junctions called synapses, which feature high concentrations of neurotransmitters from the upstream cell that activate receptors on the downstream cell.

Neurotransmitters can be excitatory, triggering propagation of an impulse in the receiving nerve cell. Or they can be inhibitory, temporarily preventing the receiving nerve cell from propagating any impulses. The roughly one-fifth of all nerve cells in the brain that are inhibitory mainly do their job by secreting a neurotransmitter called GABA.

While the bulk of GABA signaling takes place at synapses, scientists have learned that nerve cells can also feature GABA receptors elsewhere on their outer surfaces. These are called extrasynaptic receptors. In 2010, other researchers reported that extrasynaptic GABA signaling impeded stroke recovery in an animal model. But until the Stanford study, nobody had looked into the impact on stroke recovery of the far more common synaptic GABA signaling.

To do that, Steinberg, Bliss and their associates conducted a series of anatomical, physiological and behavioral experiments. Their efforts were assisted by the fact that there are small, structural differences between synaptic and extrasynaptic GABA receptors, so they can be distinguished by various techniques.

Using a high-resolution visualization method, the Stanford scientists examined a region of the mouse brain near the area that had been destroyed by stroke and is known to rewire afterward. They saw a transient increase in the number of GABA synapses. This increase peaked at about a week after the stroke and subsided to baseline levels by one month after the stroke’s damage has been done. The rise and fall of synapse-associated GABA receptors was restricted to a particular layer of the cerebral cortex that sends output to the spinal cord and to other brain areas.

Intrigued by this anatomical finding, the scientists looped in their colleague John Huguenard, PhD, professor of neurology and neurological sciences and co-author of the study. Electrophysiological experiments in Huguenard’s lab confirmed that the transitory increase in GABA synapse numbers in the brain area under scrutiny was matched by an increase, followed by a decline to baseline levels, in synaptic GABA signaling, confirming that the synapses were indeed functional.

Sub-sedative doses

To determine whether the transient increase in post-stroke synaptic GABA signaling was beneficial — and, if so, whether it could be enhanced — the investigators turned to zolpidem, which works by enhancing synaptic GABA signaling. They induced either of two different types of strokes in mice — one type severely damages sensory ability; the other deeply impairs movement — then put the mice on a regimen of either zolpidem or a control solution that did not contain the drug.

The scientists administered the drug in sub-sedative doses. They wanted to see how the mice would perform on tests of sensory ability and motor coordination, so the mice needed to be fully awake. Zolpidem is known to have a much higher affinity for synapse-associated GABA receptors than for their extrasynaptic counterparts. So, low doses were likely to enhance synaptic GABA signaling without having much of an effect on extrasynaptic signaling.

The team delayed zolpidem administration until three days after the stroke in order to ensure that any benefit they observed was resulting from an effect on brain recovery, rather than from the drug preventing initial tissue damage from the stroke.

The researchers subjected these mice to two kinds of tests. One measured the speed with which they removed a patch of adhesive tape from one of their paws (mice ordinarily are quick to do so). The other test gauged their ability to traverse a horizontal rotating beam.

In almost every case, zolpidem-treated mice recovered at a faster rate than control mice did. It took about a month, for example, for mice not given zolpidem to fully recover their stroke-impaired ability to notice the tape stuck to their paw. Mice given zolpidem recovered that ability within a few days of treatment.

While zolpidem dramatically improved mice’s rate of recovery from stroke, its ability to increase the extent of their recovery couldn’t be determined because, unlike humans, mice naturally regain most of their pre-stroke function eventually. So the Stanford researchers intend to test the drug in other animal models, as well as to experiment with different dose sizes and timing, before proceeding to clinical trials.

“Before this study, the thinking in the field was that GABA signaling after a stroke was detrimental,” said Steinberg. “But now we know that if it’s the right kind of GABA signaling, it’s beneficial. And we’ve identified an FDA-approved drug that decisively promotes the beneficial signaling.”

Story Source:

The above post is reprinted from materials provided by Stanford University Medical Center. The original item was written by Bruce Goldman. Note: Materials may be edited for content and length.

Journal Reference:

  1. Takeshi Hiu, Zoya Farzampour, Jeanne T. Paz, Eric Hou Jen Wang, Corrine Badgely, Andrew Olson, Kristina D. Micheva, Gordon Wang, Robin Lemmens, Kevin V. Tran, Yasuhiro Nishiyama, Xibin Liang, Scott A. Hamilton, Nancy O’Rourke, Stephen J. Smith, John R. Huguenard, Tonya M. Bliss, Gary K. Steinberg. Enhanced phasic GABA inhibition during the repair phase of stroke: a novel therapeutic target. Brain, December 2015 DOI: 10.1093/brain/awv360

Stroke detecting software to be rolled out across New Zealand

Health Minister Jonathan Coleman

Health Minister Jonathan Coleman, left, meets with stroke patient Judith Allen at Wellington Hospital, assisted by clinical nurse Lai-Kin Wong.


Judith Allen was trying to roll over in bed. Instead she fell on the floor, unable to move her limbs.

Six weeks after the stroke, the 75-years-old from Tawa is still in Wellington Hospital with half her body paralysed, recovering.

Her husband, Eddie Allen, said the couple had both been healthy for their age, staying active and watching their diet.

“It just strikes with such suddenness out of blue. There was no indication at all that anything was wrong,” he said.

Judith was rushed to hospital and within hours she had fallen into a drowsy semi sleep that gripped her for more than two weeks, leaving her unable to speak.

“I think the brain just goes into a holding pattern for a while to recover from the trauma,” her husband said.

Judith was one of several stroke patients at Wellington Hospital visited by Health Minister Jonathan Coleman on Thursday.  He was announcing the nationwide roll-out of new stroke diagnosis software for general practitioners, aimed at detecting the early signs of stroke.

These warning signs included transient ischemic attacks or mini strokes. The aim was to identify patients before they ended up in hospital.

About one in five people who suffer a mini stroke have a full-blown stroke within days.

Coleman said stroke was the third biggest cause of death in New Zealand and, while overall rates were not going up, it was increasingly affecting younger people and Maori. Early symptoms of a stroke were not picked up, he said, using the example of former All Black Piri Weepu’s stroke in 2014, which took weeks to diagnose.

“It will save lives … it brings simplicity and clarity to a very complex area,” Coleman said.

Whether the software would have picked up on early signs of Judith’s upcoming stroke is unknown.

Her recovery has been complicated by secondary bowel problem. She is planning to attend a family wedding in Auckland in December but her husband said that is unlikely.

Whether she will ever recovery the use of left side of her body, which she refers to as her “heavy lump”, is also uncertain.

However Judith remains determined to return to her old life, pointing to a teddy bear in the corner of her room holding a “be positive” sign.

“I will get there. The teddy tells me to be positive.”


* Stroke kills about 2500 people a year in New Zealand, making it the country’s third-biggest killer.

* Nearly one in three people who suffer a stroke die, while another third are left permanently disabled.

* The likelihood of suffering a stroke increases with unhealthy lifestyle choices. Alcohol, high salt intake, a lack of exercise and smoking can all increase your risk.

* High blood pressure is the biggest risk factor for a stroke.


Crankiness could cause your heart attack.

Careful your tantrum doesn't turn in to a heart attack.<br /><br /><br /><br /> Photo / 123RF
Careful your tantrum doesn’t turn in to a heart attack. 

The risk of having a heart attack shoots up following an outburst of anger, a study among hospital heart patients has found.

The study, published in a European medical journal, found the risk of heart attack was 8.5 times higher in the two hours following an acute episode of anger than during a patient’s baseline levels of anger on a 1 to 7 scale.

Read more: When can you start having sex after a heart attack?

The authors say their findings appear to confirm the indications of earlier research – and experience – that anger can act as a trigger for a heart attack. They advocate considering “strategies to protect individuals most at risk during times of acute anger”.

The researchers studied patients suspected of having a heart attack who were admitted for primary angioplasty treatment at Royal North Shore Hospital in Sydney between 2006 and 2012.

Anger during the 48 hours preceding symptom onset was self-assessed by the 313 patients’ reporting from on the scale on which 1 was “calm”, and 7 was “enraged, out of control, throwing objects, hurting yourself or others”. The threshold of acute anger in the study was defined as level 5 – “very angry, body tense, maybe fists clenched, ready to burst”.

Seven of the confirmed heart attack patients (2.2 per cent) had reached an anger of at least level 5 within the two-hours before their symptoms began.

Based on the subjects’ usual patterns, the relative risk of onset of heart attack symptoms occurring within two hours of reaching anger level 5 or above was calculated as 8.5 times greater than that associated with normal levels on the anger scale.

The trigger events for the 313 patients included road rage, work stress and family rows.

One of the researchers, Dr Thomas Buckley, said the absolute risk of any one anger episode triggering a heart attack was low, but the study showed the danger was real.

The increased risk of heart attack following intense anger or anxiety probably resulted from increased heart rate and blood pressure, tightening of blood vessels and increased clotting – physiological changes that were all associated with triggering of heart attacks.

By Martin Johnston

New Zealand Herald 24/2/2015.