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Self Help Groups / Patient Support Groups – Role in Clinical Research and Epidemiology

Clinical Research

Self Help Groups / Patient Support Groups – Role in Clinical Research and Epidemiology

A patient support group is constituted as a common forum or locus where patients with common diseases or interests can obtain information about their condition, share feelings and experiences and attain a sense of belonging and acceptance. Even though not being fully representative of the disease population, the pharmaceutical industry has long recognised the marketing potential of such patient groups utilizing them as surrogate marketing tools.

Such patient organisations have a crucial role in the process of translational research by advocating effective and timely access of safe therapies to patients. This aim brings them at the crossroads of the innovation stakeholders, the patients, government and pharmaceutical industry.

Patients groups also function in an advisory capacity for recruitment and retention of patients in clinical trials.( Cees Smit,2009, Applied Clinical Trials)

“Patient UK” website lists details of 1830 UK patient support organizations, self help groups, health and disease information providers, etc.

These organizations attract financial support from the pharmaceutical industry establishing a symbiotic relationship. This relationship may be strengthened by the patient groups support for orphan diseases and the big pharma’s need for support of its niche-buster business model.

Symbiotic Needs of patient groups and Pharmaceutical Industry (Drawn from Herxheimer A, 2003)


Patient organization needsPharmaceutical Industry needs
Short term project fundingShort and medium term market expansion
Short and medium term information needsShort and medium term market penetration
Medium term need for lobbying for resources to help people.Medium term lobbying against restrictive regulatory policies
Medium and long term business expertise.Project as a corporate social responsibility
Long term core funding

In Nigeria, the adherence to antiretroviral therapy (ART) is highly variable. For example in Kano (Northern Nigeria) it is 80%. However in

Niger Delta, Ile-Ife, Benin City, and Ibadan (Southern Nigeria) are 49.2%, 44%, 58.1%, and 63%, respectively (Holstad MM et al, 2012).

In a study conducted in Nigeria it was found that interdisciplinary and multicomponent interventions that included support groups and group health education demonstrated higher compliance and significantly better CD4 counts and retroviral loads at 24 weeks for those in the intervention compared to standard care. These results suggested that group interventions may be more successful in improving compliance and clinical outcomes (Holstad MM et al, 2012).


An online poll conducted by BMJ with 230 respondents showed 16% for and 84% against funding of patient groups by pharmaceutical industry. This shows that the community worldwide sees these groups as governed by the same standards of medical ethics as for medical professionals.

This conflict of interest was analysed in a study for 69 patient organizations for 10 diseases for indicators of transparency, advertising, and disclosure of Pharma funding using an abstraction tool and inspection of annual reports. It concluded that patient group websites do not provide enough information to assess whether a conflict of interest exists. Advertising was shown to be minimal but display of logos and corporate advertisements was highly prevalent. This study further highlights the need of an ethical code to guide patient groups on involvement with pharmaceutical industry to have an independent existence for larger patient benefit. (Ball DE et al, 2006)

The Long Term Medical Conditions Alliance has laid down good practice guidelines for patient organizations on relations with the pharmaceutical industry, funding and product endorsement. (Herxheimer A, 2003)

The impact of patient groups, their vulnerability in the hands of the big pharma and the changing business environment necessitates the national and international bodies to have a regulatory oversight after their proper institutionalization as stakeholders in drug development.


Ball DE, Tisocki K, Herxheimer A. Advertising and disclosure of funding on patient organisation websites: a cross-sectional survey. BMC Public Health 2006; 6:201

Cees Smit, Patient Power, Advancing medicine and the clinical research process with the help of patient organizations. Mar 1, 2009. Applied Clinical Trials. Accessed 0th May 2009.

Herxheimer A, Relationships between the pharmaceutical industry and patients’ organisations. BMJ 2003;326:1208–10

“Patient UK”, Accessed 20th may 2009.

Should patient groups accept money from the pharmaceutical industry? 20th May 2009.

Holstad MM, Essien JE, Ekong E, Higgins M, Teplinskiy I, Adewuyi MF., Motivational groups support adherence to antiretroviral therapy and use of risk reduction behaviors in HIV positive Nigerian women: a pilot study. Afr J Reprod Health. 2012 Sep; 16(3):14-27.

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