The power of participatory healthcare: stroke prevention as an example

In the last post of 2015 we discussed about participatory medicine as a future trend that is becoming more and more important in everyday practice. Indeed, it would be more correct to talk about participatory healthcare, since patient work has not only impact on therapeutic or clinical aspects but also on processes, management or prevention.

Participatory healthcare and prevention
Precisely prevention is one of the fields were patients can make more interesting contributions, as this stroke prevention shows. The workshop was organized at the end of 2015 in the city of Móstoles (nearby Madrid) by the Institute for Patient Experience in Spain (IEXP) at initiative of the patient association “Stop Stroke” with the support of the University Hospital “Puerta del Sur”, belonging to the Group HM Hospitales, that also provided the facilities.

David Amorós, Carolina Egea and Irene Tato, ptofessionales fromn the IEXP
David Amorós, Carolina Egea and Irene Tato, ptofessionales fromn the IEXP

The workshop’s goal was to identify and develop initiative that helped to prevent stroke at the workplace, since 35% of cases are produced during the working age and 18% are people under 40 years. Stroke was until 10 to 15 years ago more a disease of elderly people and now more and more younger people become stroke victims. More alarming is that 80% of cases can be prevented at the very workplace and nothing is done.

True that there is a high social consciousness about the dangers of heart attacks or of cancer, there is no such an awareness about brain stroke, that leaves severe sequels for the entire life. Unlike cancer or heart diseases, prevention is relatively easy and highly effective.

“Stop ictus” asked the IEXP to help at the finding of preventing solutions that could contribute to reduce incidence figures at the workplace. Given the high variety and complexity of actors that play a role in prevention in Spain a process of participatory healthcare was set up; the workshop would only be the first step in order to implement effective solutions in companies.

For this reason not only neurologists, patients and family caregivers were asked to participate, but also companies, mutual insurance companies (MIC), safety and occupational risk prevention societies (SORS), nurses, primary care doctors and pharmaceutical companies. During the first phase of the workshop they worked only from the point of view of their professional or social identity. This means as patients, doctors, companies etc.. During the second phase they worked cross-functionally and at the third stage they developed solutions with a participatory approach.

Practical outcomes of a participatory healthcare workshop
Practical outcomes of a participatory healthcare workshop. Source: IEXP

The numbers of the day are impressive. In only one morning 246 valuable insights on prevention (or lack of prevention)  were collected that can be applied immediately by MICs and SORSs, as well as pharmaceutical companies. Out of this insights 33 initiatives were born plus 42 ideas developed from the participatory stage that can be classified in 5 fields of action: work with companies that have already stroke awareness, improved preventive work, active patients programs as well as communication and social awareness. 17 practical proposals were worked out and 4 specific projects.

Changing perspectives
Most insights related with the diagnosis made by participants from their social and professional role (as doctors, patients, mutual insurance companies, etc.) emphasized communication and awareness problems, the fragmentation and bad use of the Spanish prevention system (it looks like actors fulfil a tiresome legal duty rather than taking prevention seriously or as an investment in human capital) as well as important shortfalls in prevention within companies. As soon as participants changed positions and did not see the problem from their usual perspective but from a participatory and collaborative point of view, communication and awareness dropped to the third position and insights started to address on how to produce prevention by changing parts of the system companies-mutual insurances-safety societies. From this new perspective it was easier to think about specific and applicable prevention measures.

Generally speaking, changing participant perspectives produces insights of a higher quality than those produced only from a given social or professional role as doctor, nurse etc.. The latter are highly qualified, but participatory work makes them go really far beyond.

Doctors discussing about stroke prevention failures
Doctors discussing about stroke prevention failures

10 insights on stroke prevention
It was difficult to choose the most significant insights from 246, but since they can be classified in several themes, the main ones could be the following:

1.Stroke prevention in the workplace is easy and profitable
2. Difficulties come from:
– Lack of social awareness
– Non-committed companies that punish prevention
– Fragmentation and bureaucratization of the system company-mutual insurance-safety society
3. Work environment and working culture are direct causes of stroke. Stroke is a work accident
4. What is done in public healthcare after stroke works very good, what is done before (prevention) does not work
5. There is no social awareness of stroke risks and dangers; advertising campaigns do not work
6. But patient empowerment programs do work
7. Measures work when they can be integrated in day to day life
8. Medical and advertisement messages are one way messages: without knowing the patient’s and family perspective they cannot be integrated in day to day life
9. Technology breaks boundaries
10. Transformation power is within the individual: he or she will only change if he/she can make sense out of the events and integrate the new in his/her life

Stroke as occupational illness and the role of the individual
There are many more interesting insights, like the fact that passive awareness campaigns work, that nurse consulting reduces significantly sick leave, that every euro invested in prevention saves 100 in sick leave and knowledge loss or that the family is the main rehab technician. Personally I consider two of these 10 insights especially relevant: number 3 and number 10.

Both, from their professional roles and also working cross functionally, participants agreed that working habits are the main source of stroke within the population in working age. Stroke increase

Stroke as occupational disease
Stroke as occupational disease caused by a streesful worplace and pressures from competitiveness social model

within this group in the past 10 to 15 years did not happen by chance. Those were the years were international competition increased, Spain lost its industrial base, the State deregulated social protection and made working contracts flexible. Workers as well as middle and top managers were exposed to a high pressure. Since 2005 workers and managers must be also available by mail outside of job hors, so that the border between working and free time vanishes. Together with job uncertainty and a success model based on long working hours all these factors had a high impact on stress, blood pressure and arrhythmia increase…all factors leading to brain stroke.

In this sense, stroke can be considered as an occupational illness, as already a Spanish court decision admits. Therefore any prevention must not only focus on measures to achieve a healthy workplace, but mainly to achieve working conditions that allow a true work life balance.

Taller ictus CarolInsight number 10 tells us that communication about prevention –including medical communication- is not effective unless recommendations make sense for the individual. It is of no use to prescribe more doing more sport if to the 10 hours of real working time we must add another 2 of transportation during rush hours. For this reason it is key that measures and recommendations are not one way direction, but that they adapt to user’s needs and contexts. Empowerment work is a fundamental tool in this sense.

It is also important to state that only 40% of Spanish workers make use of medical examination by mutual insurances; and that in big enterprises. Small enterprises are out of the prevention system, so that in fact 80% of Spanish workers do not make regular health checks. Mutual insurance companies have seen how prices for examinations have been reduced over the years so that an advice on stroke or other vascular risks is not within the price, even though it would be easy and cheap only by knowing blood pressure and cholesterol values. Mutual insurance companies are separated by law from safety and occupational risk prevention societies, so that this information (treated in a statistical way in order to not violate confidentiality) does not reach the employer nor the safety society and no preventive measures can be implemented.

Four very practical solutions to prevent stroke at workplace

Participants developed practical solutions
Participants developed practical solutions

Participants were very much aware that they were not able to change the working environment, competitive pressures, nor the Spanish prevention system or the prevention law. They came up instead with four very practical solutions to be applied immediately at the workplace:

  • A guide for stroke prevention and rehabilitation in companies
  • Improved medical examination protocol
  • Health risk management protocol for companies
  • Passive awareness campaign

These are quick ways to reduce stroke impact at workplace that any company can implement in short time and with low cost. Their implementation would have a high impact on public health with a low investment. This is why this workshop is a very interesting example of the power of participatory healthcare.

Other success cases in participatory medicine: pharmaceutical industry and hospitals
Is this an isolated case or are there other ones? Other works done by the IEXP with pharma companies and hospitals (in the fields of oncology, value of brand drugs, identification of alveolar injury or technologies for genetic diagnosis) show that in a first diagnosis phase like the one described in this post it is easy to produce between 180 and 260 valuable insights, that it is easy to develop around 10 improvement measures of high impact that are easy to implement in a relative quick time at a moderated cost.

Regarding insights, it is true that they only represent a small sample of the population, but they are of such depth that they allow a real knowledge of target publics and are an excellent base for further surveys, as well as for capturing conversation in social media or big data.

Data are important, but listening is the fundamental pillar for getting precise data.

participatory healthcare

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