Patient groups are influencing govt policy, study finds

Half of all healthcare professionals interviewed for a new study say they believe their country's current government has prioritised their medical specialty as a result of campaigning by patient organisations.

Even when governments impose major reforms on their healthcare systems, years will pass, generally speaking, before the desired effect becomes discernible - if indeed it ever does. However, the patient movement is proving to be an exception to the rule that change is slow in healthcare systems, says PatientView, which has conducted the first-ever benchmarking exercise to assess the impact of both individual patient groups and collections of such bodies.

Patients groups have never been so popular, the report finds. They, and other health nongovernmental organisations (NGOs), are expanding rapidly, their growth fuelled by the damage inflicted upon mainstream national healthcare systems by tough new doses of fiscal austerity and by ever-increasing patient demand for services.

Frustrated at declining levels of provision, patients are readily turning to the charity sector for help and advice, and they are also prospering from the advent of social media, which enables them to reach out to thousands and sometimes millions of patients at a fraction of the cost of traditional methods of communication, it says.

The benchmarking exercise reveals that all the healthcare professionals interviewed have some form of contact with patient groups. 72% told the survey that they are in frequent contact with national groups, 64% with global/international patient bodies, 19% with large regional groups and 17% with local organisations.

Communications with industry are less frequent, with only 36% of healthcare industry executives interviewed for the report saying that they make frequent contact with global/international patient groups. 20% say they are in frequent contact with national patient bodies, 13% with large regional groups and 8% with local patient groups.

However, 60% of the industry executives believe that patient groups are highly regarded in their countries, and 43% believe that their current government has prioritised their own particular medical specialty area, or areas, as a result of campaigning by patient organisations.

Half of the healthcare professionals also believe that their governments have prioritised their own specialty area/areas because of patient group activity, but only a third believe that patient organisations are held in high regard in their country.

Both healthcare professionals and industry executives regard patient organisations as an important source of information, the study finds. 60% of both the professionals and the executives say they frequently consult patient groups' websites, while 50% of both groups frequently or occasionally obtain information from patient group online discussion forums. 

And 31% of the professionals and 47% of the executives also say they frequently or occasionally obtain information from patient group Twitter sites.

However, both groups expressed concern for the sustained financing of patient organisations.

The 1,000 patient groups participating in the survey were asked to self-assess their effectiveness across a range of eight indicators - business acumen, communication (via social media), range of services provided, scale of networking with other healthcare sectors, scale of networking with peer organisations, reputation, impact on national health policy and perceived hurdles.

The report finds that groups in Central and Social America are the most effective, followed by those in Australasia, then the UK. Those in Eastern Europe come fourth, followed by Spain, Italy, USA, Canada, France and finally Germany. However, all patient groups everywhere have some way to go yet, if they are to truly excel at their tasks, says PatientView.