Health services have been given much useful advice about how to make better use of the knowledge of patients and community members.
In a plenary address to the recent Health Services and Policy Research Conference in Melbourne (#HSR15), Jen Morris, a patient perspectives consultant, advocate and researcher, made a powerful argument for patient engagement as a critical tool for improving the safety and quality of healthcare.
Amongst other things, she said that patients can introduce a “constructive unease” into the culture, methods, processes and structures that comprise the healthcare system.
Jennifer Doggett reports:
Patient advocate and researcher Jen Morris’s keynote address at #HSR15 was enthusiastically received by delegates and the Twittersphere. Her insights into the role of consumers in healthcare were also picked up by a number of speakers at the conference, who repeated and reinforced many of her points.
Her address was titled “Patient innovators: tapping the most underused resource in healthcare” and focused on how consumers can play a greater role in influencing the delivery of healthcare.
In defining the role of consumers, Morris described how the media regularly features stories on a shortage of healthcare resources – be it time, money, beds, equipment, specialists, or anything else.
She argued that under this perpetual headline, patients are described, at worst, as a drain on resources – for example, through unnecessary attendance at the emergency department – or, at best, as vulnerable victims of resource shortage. She said that consumer or patient engagement is similarly viewed as a resources drain.
Morris challenged delegates to reconsider the way in which the relationship between patients and healthcare resources is framed under this constant headline.
Respect and support
She argued that patients are both users of resources within the health system and are themselves also resources who can help to address some of the problems within the health system, when they are respected and supported.
This is because patients are ultimately motivated to ensure healthcare is the best it can be, as they are the ones who reap the greatest rewards or suffer the greatest personal cost, depending on the quality of their healthcare.
Morris outlined different areas where consumer input could help, including:
- Research – direction, design, communication
- Design – of services, communications and systems
- Provision – support groups, peer education
- Evaluation – research participation, examining performance
- Improvement – ideas for change, trials of changes
- Reform – input into large-scale overhauls
- Conclusion – dealing with loss or restructure of services or programs.
She also described the different target groups for consultation and engagement process, which can include the following:
- Non-users of the service
- Individuals using service
- Those connected with individuals using service
- Specific group or community members (such as Aboriginal and Torres Strait Islander people, transgender people, teenage parents)
- General community members
- Experts in non-health disciplines.
Morris said the different types of input sought from consumers included asking questions, evaluating suggestions and identifying needs, barriers and enablers to help them achieve their goals.
She outlined a broad range of benefits arising from consumer engagement in healthcare. This includes introducing what she termed “constructive unease” into the culture, methods, processes and structures that comprise the healthcare system.
Morris argued that the healthcare system desperately needs an injection of what one might call “transformation by transparency”.
She described this as “a sense that learning about one’s faults – like having somebody quietly tap you on the shoulder and mention the toilet paper on your shoe – might be momentarily painful, but it is far more helpful in the long term. Because you can do something about it.”
Overcoming blind spots
Health services use many great initiatives, both compulsory and voluntary, to gather data on patient experience in an organised fashion, such as standardised patient experience questionnaires and surveys and clinical data on readmission rates and waiting times. While these are highly valuable, Morris argued that they are not sufficient.
She said that in healthcare, as in life, the worst kind of blind spot is the one you don’t realise you have, because then there is no hope of fixing it or even making an informed decision about whether to fix it.
This means that even health services that show real commitment to measuring patient experience, or care quality and safety will only really collect and analyse data on factors and patterns they are already looking for – the things that they think are important.
The result of this is that a health service’s greatest weakness becomes such not because of deliberate neglect of the issue, but because the issue has not even entered their scope of awareness, much less been pegged as something important.
One counter measure to this is to encourage freer-form patient input, released from the constraints of forms and random surveys and structured feedback schedules, as this can shine a light on the blind spots that health services don’t even realise they have.
Morris also argued that patient engagement is a vital measure in improving the safety of care. She said that every instance of preventable harm in healthcare provides an opportunity to learn, improve and to prevent similar events in the future.
These benefits can extend all the way from individual practitioners, through teams, departments, hospitals, services, and the health system as a whole and they are maximised by directly and proactively involving patients in a culture of safety in healthcare.
Patients can make a unique contribution to healthcare safety because they are uniquely placed to observe risks in care. They can offer crucial clues and information on factors that contribute to clinical risk and adverse events, which might never otherwise come to light, and even come up with ideas about how to reduce them.
Unlike any other participant in the healthcare process, patients are there for every test, consult, procedure, treatment, handover and other component of the delivery of healthcare.
In particular, patients are best placed to provide perspectives on contributing factors leading to adverse events, such as those relating specifically to patient experiences. These may go unnoticed if investigations focus only on practitioner-centred issues, such as inadequate staffing or poor consultant handwriting.
Hear the canary
Morris pointed out that there is powerful evidence that, when taken collectively, patient voices can be a very effective “canary in the coalmine” to detect struggling or problematic practitioners.
She gave the example of complaints against doctors as one area in which patients could play an important role in ensuring the quality and safety of the health workforce and in detecting practitioners who are in difficulty.
Morris went on to discuss patient expectations, stating that “healthcare will only get better when we start talking about ‘patient expectations’ as though they are right to have them.”
She argued that patient expectations do not arise from nowhere and that the healthcare system has to take responsibility for its role in creating them.
She also made a case for seeing healthcare as a social contract between providers and consumers, and said healthcare must match consumers’ trust with trustworthiness in order to deliver on its side of the contract
Patient engagement is one way in which healthcare services can ensure that practices within healthcare better match up to community standards. This can be achieved through involving consumers in a number of areas including:
- Quality and safety governance
- Hiring processes
- Training and education
- Enforcement of transparency and accountability (committees that ask questions, not just answer them)
- Investigations and disciplinary proceedings (including consumers on medical and other health professional boards).
Morris discussed a common approach to patient engagement whereby health services identify problems to solve and then seek consumer input on a specific solution they have already devised. She argued that this approach can miss much of the potential contribution consumers can make to service improvement.
Useful questions to ask
Instead of ‘narrow’ consultation with consumers, Morris advised services to regularly ask the most open questions possible, such as:
How could our service be improved?
What is good about our service?
What could be better about our service?
What do you wish was different about our service?
If you could give one piece of advice to the service, what would it be?
She also stressed the importance of fostering consumer engagement and creating an environment in which consumers can ask questions and raise their own issues of concern.
Morris concluded her presentation by stating that there is so much to be gained from recognising the value of patients, consumers and members of the public in shaping, driving and delivering health services.
She reiterated the importance of seeing patients as a precious but tragically under-utilised resource in healthcare and said that while a common newspaper headline was ‘Patient saved by medical breakthrough’, her work would not be done until another headline was at least as common: ‘Healthcare saved by patient breakthrough’.
• On Twitter, follow @JenWords
Update, 24 Dec
As this is our final article from the #HSR15 conference coverage, below are the Twitter analytics covering the period 22 Nov to 24 December.
Plus you can read the entire Twitter transcript for #HSR15 over that period.
And here is a grab of the #HSR15 Twitter participants:
• Jennifer Doggett covered the conference for the Croakey Conference News Service.
• Track Croakey’s coverage here.