Benchmarking Patient Groups – from 11 therapy areas



  Why HIV/AIDS patient groups rank 1st out of 11 therapy areas for overall effectiveness at their job.
Why cancer patient groups rank only 9th out of 11 therapy areas for overall effectiveness at their job.
Why mental-health patient groups rank 1st out of 11 therapy areas for business acumen.
Why respiratory patient groups rank 1st for networking with their peers.
Why diabetes groups—which rank 4th at overall effectiveness at their job—lack business-like qualities.
That circulatory-disease patient groups claim greater financial independence than any other type of patient group.
That the vast majority patient groups specialising in endocrine conditions find raising money a major hurdle, and are not financially independent.
That gastrointestinal patient groups are so hindered by public apathy that they are the least effective patient groups at influencing the agenda of national healthcare systems.
That rare-disease patient groups (which rank 7th out of 11 therapy areas for overall effectiveness at their job) face numerous challenges, but work strenuously at overcoming problems of fragmentation, dispersion, and small size.
That endocrine patient groups are good at communicating their messages through social media.
About the barriers confronting patient groups specialising in rheumatological and neurological conditions.
About the poor reputation that rheumatological patient groups believe they have among other healthcare stakeholders.

‘Benchmarking patient groups from 11 therapy areas’

8 indicators –  Business acumen  Communication skills via social media  Range of services  Scale of networking with other stakeholders  Scale of networking with peers  Reputation  Impact upon health policy  Perceived hurdles

11 therapy areas –  Cancer  Circulatory conditions  Diabetes  Endocrine conditions  Gastrointestinal conditions  HIV/AIDS  Mental-health problems  Neurological conditions  Rare diseases  Respiratory conditions  Rheumatological conditions

Today’s patient groups do not solely provide information and support to patients—they can also exert a profound impact on healthcare systems. Yet, despite the size and influence of the patient movement, no method has previously existed for measuring the scale of its impact (other than anecdotally, by knowing the achievements of individual patient groups). Without a benchmarking tool, companies cannot hope to learn the capabilities and the limitations of the patient organisations with which they may partner (or to know best how they can support patient organisations in their area of interest). For this reason, PatientView has developed the first-ever benchmarking tool of the patient movement, helped by the support of 1,000 patient groups worldwide. Full details about the benchmarking system are provided in the July 2012 issue of PatientView Quarterly (which also holds full rankings of the effectiveness of patient groups across 10 different countries or regions of the world).

Purchasing details

If you are interested in purchasing ‘Benchmarking the Impact of the Patient Movement (part 2)’, PatientView Quarterly, October 2012, the price is GBP 850 (when paid by credit card).

If you are interested in purchasing both part 1 and part 2 of PatientView’s benchmarking study, a special offer available during October-November 2012 reduces the combined price to GBP 1,500.

To purchase this report, please send an email to our secure email address:

Benchmarking the Impact of the Patient Movement (part 2)’, If you would like to learn more about this latest PatientView Quarterly from our CEO, Dr Alexandra Wyke (or set up a telephone conference call) you can contact her at
Or ring 0044-(0)1547-520-965