Benchmarking: Mental Health Patient Groups

Mental health patient groups least effective at providing services to patients.

Mental health patient groups were the least effective type of patient group at providing services to patients. They dropped from 5th to 10th place (out of 11), according to research carried out by PatientView in 2014 ‘benchmarking’. PatientView was invited to present its findings at the 2017 Annual Convention of GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe) in Budapest. This took place in September, to stimulate discussion among the Alliance’s members and other stakeholder participants on ways they could improve their services and better serve their communities.

PatientView’s 2014 Benchmarking the Patient Movement study, surveyed over 1000 patient groups in 60 countries. In total, 162 patient groups with an interest in mental health, from 33 different countries, responded. The survey was first launched in 2012 and sets out to compare patient groups across 11 therapeutic areas and 12 geographic regions of the world with one another and examine their potency. Eight agreed indicators are measured to test patient groups’ impact on national health policy, their range of services to patients, and how well they network with peer groups and other health stakeholders. A new survey will be carried out in 2018.

Following on, in the study, mental health patient groups also reported other hurdles in reaching their goals. These were from a lack of funding and access to medicines to public apathy, indifferent media, uncooperative medical professionals and lack of research investment.


As the GAMIAN-Europe convention focused on digital capacity-building, it became clear that better use of digital health tools could offer ways to overturn this decline.  It could also address many of these hurdles – at relatively low cost and for greater impact. However, on the indicator of e-communication in the survey, mental health groups fared only as average or low in terms of social media, blogging and other digital activity compared to other therapy areas.

GAMIAN-Europe Survey Results Table

Highlighted, are 3 key actions in which patient groups can take immediate steps to improve:

Better harnessing of social media.

Firstly, to allow influential advocates and mental health patient experts to engage with their communities. Also to gain a broader range of audiences. Although mental health patient groups improved their levels of e-communication between 2012 and 2014, so too did other types of patient groups. They did this at a faster pace than the mental health patient groups.

Improving networking with other healthcare stakeholders

Secondly, to improve awareness and knowledge of GAMIAN-Europe’s activities and messaging. To target resources more effectively by sharing platforms and projects. Lastly, to engage and educate difficult-to-reach health professional, research funder, and media audiences.

Greater unification among mental health patient groups

Lastly, in 2014, mental health patient groups ranked 8th for their ability to network with peer patient groups. This was a significant decline from their 2012 performance, when they ranked 3rd.

The key message was that mental health patient groups need to become much more digitally-savvy. As one US patient group responding to the 2014 benchmarking survey noted:

“far too many mental health organisations are competing for the same space.”

In addition, the years 2012-2014 saw thousands of individuals enter social media. They were also seeking to advocate on issues of mental health, crowding the space, and blunting the messages.

The intervening three years will have only increased these pressures. The 2018 survey will reveal how well mental health patient groups have responded to these challenges.


Read the full report from the GAMIAN-Europe 2017 Annual Convention…

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View the presentation on PatientView’s Benchmarking Study…

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