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.


Welcome to “A Head of Stroke”

A Head of StrokeDedicated to Reconnection after Stroke
A Head of Stroke
Dedicated to Reconnection after Stroke

Welcome to “A Head of Stroke” a New Zealand blog, website & connection dedicated to those affected by Stroke re-contributing to their community.

Having taken the time to research the literature on Stroke, I found that much of the existing  literature  on  the impact  of major life trauma  such as stroke and  its relationship  to work is written  from  an  expert  point  of view.

It focuses on either the factors that contribute to an individual’s  ability to return  to work or on the ways in  which  experts  can facilitate  return  to  work. There is a particular focus on assessment and rehabilitation.  There  is less evidence  from  the  survivors’ point of view, of factors that motivate them to return  to  work;  their  own assessment   of  the  feasibility; opportunities for returning to work; the meaning and importance of work or their experiences  of returning to  work.

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
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

If rehabilitation services are to be person-centred it is important  that  they  are  based  on  and   take  into account  the personal  experiences  of individuals  who have survived  a stroke.  Without  these  insights  it is likely that important factors which influence recovery from  stroke  will be  missed  and  therefore  efforts to help individuals who have had a stroke may not meet their needs  and aspirations.

A study conducted by an International Stroke Association in the UK; emphasised the needs of the Forgotten Stroke Survivor.  They found that an alarming rate a stroke survivors were not receiving the proper long-term information on rehabilitation and recovery after a stroke.

Is the same situation true in New Zealand?