Now if we can just get stroke leaders to listen to us(100% recovery is the only goal) or depose them as extinct leaders. But stroke leaders will hang onto power until we overthrow them for incompetence.
CardioPulse discovers how patient power is keeping cardiac care on its toes in Sweden
Mark Nicholls speaks to Professor Joep Perk and colleagues about the healthcare role heart patients are playing in Sweden.
With
increased patient involvement defined by the European Society of
Cardiology as a strategic priority, the role patients can play in
helping shape cardiac care with their input, first-person expertise, and
feedback was high on the agenda at ESC 2019 in Paris. Members of the
new patient forum took an active role in the conference; but just how
can patients influence cardiovascular medicine, the treatment offered,
help maintain high standards of care at a hospital or across a region,
and what impact can they have?
A striking
example has recently emerged in Sweden—underpinned by the nationwide
SWEDEHEART registry—demonstrating the power, influence, and input
patients can have and their critical role in maintaining and driving up
standards and holding healthcare providers to account. Formed in 2005,
the SWEDEHEART registry includes a range of quality indicators for
patients with cardiovascular disease in Sweden, including data on
secondary prevention outcomes for patients after myocardial infarction
(MI).
With
almost all hospitals in Sweden contributing to the SWEDEHEART registry
and an annual report providing hospitals with important quality
information—participating cardiac rehabilitation (CR) centres can use
the continuously updated performance data online and compare results
with national averages and with other centres. Five central CR quality
measures are: attendance in CR, percentage of smoking patients who are
abstinent post-MI, patient targets for blood pressure and LDL
cholesterol, and percentage participating in physical exercise training.
However, patients do not often access, or act upon, the data.
The
Swedish Heart and Lung Association (RHL), a non-governmental patient
organization with 37 000 registered members and 146 local branches and a
core objective to improve living conditions for those with heart and
lung diseases, collaborates regularly with the Swedish Cardiac Society
and national government and participates in regional training courses on
secondary prevention. And members are actively referring to and
monitoring the data.
At the latest
conference, in November 2019 in Linköping, a presentation by patient
Anders Nordqvist from the local RHL branch, demonstrated the true impact
of patient power and how patient organizations can influence
healthcare, using quality indicators from a national database. In 2015,
they celebrated the success of Köping hospital, when it reached first
place in the SWEDEHEART quality index, congratulating the cardiac team
with flowers, cake, and a positive article in the local newspaper.
Yet
the following year, Köping hospital had dropped 23 places and fell
further a year later, and below a neighbouring rival hospital. ‘This
could simply not be accepted,’ said Mr Nordqvist.
Armed
with SWEDEHEART quality data, they contacted the hospital and regional
health authorities seeking explanations. It emerged that staff shortages
caused a loss of focus on secondary prevention. In response, the
department head promised to explore ways to improve the situation with
RHL members invited to meet the board of the regional health authority.
The initiative from the local patients group did result in influencing
and improving the quality of care.
According
to online data from SWEDEHEART in 2019, it appears there is a positive
change in the secondary preventive results at this hospital’s CR centre:
more patients attend CR and reach target values for blood pressure and
lipids. Preliminary data now indicate that Köping hospital may once
again end up with a Top 10 ranking. Mr Nordqvist added: ‘The
association’s review of the SWEDEHEART results and the contact with
healthcare staff and politicians have been received well and we can see
that our efforts have aided in the development of cardiac care for the
better’. Köping hospital staff have welcomed the action of their local
patient group, and see it as contributing to a ‘new’ start of their care
for patients after MI.
Pelle
Johansson, senior project manager at RHL Sweden said: ‘As a large
patient organization we have shown that we can influence both public
opinion and health care politicians to strengthen the quality of cardiac
rehabilitation programmes’. The outcome illustrates the role and impact
of patient engagement and collaboration with health workers, in line
with the ethos and recent activities of the ESC Patient Forum and
underlines the importance of unity in optimizing secondary prevention.
Associate
Professor Margrét Leósdóttir from Lund University and co-ordinator of
SWEDEHEARTS’s secondary prevention sub-register, added: ‘In our
Perfect-CR study, a nationwide register study on the practice of cardiac
rehabilitation, we have seen that there is still ample room for
improvement. We welcome the support from heart patients in our endeavour
to optimize cardiac care’.
Professor
Joep Perk, from the Department of Health and Caring Sciences at
Linnaeus University and Prevention & Public Health Lead of the ESC
Advocacy Committee, stated: ‘After years of experience of joining hands
with heart patients in the Swedish Heart and Lung Patients Association, I
am particularly pleased that the ESC has acknowledged the important
role patients can play in cooperating with cardiologists and other
health workers for the benefit of heart patients around Europe. We know
it works’.
In Sweden, added Professor Perk, the hope is that patients ‘will continue observing and using the data’.
Conflict of interest: none declared.
Published on behalf of the
European Society of Cardiology. All rights reserved. © The Author(s)
2020. For permissions, please email: journals.permissions@oup.com.
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