Patient associations (PAs) provide a key support network for millions of people living with many medical conditions, and their campaigning helps to improve the lives of both patients and relatives/carers alike. As pressure on healthcare budgets grows, PAs increasingly collaborate with pharmaceutical (pharma) companies to pursue common goals.
PAs provide support, advice and information to patients with many common and rare medical conditions. Often run at local level by volunteers whose own lives or families have been touched by a specific condition, the work of PAs focuses on raising awareness of a disease and how appropriate treatment and/or patient care can be achieved. Local PAs are frequently aligned with national and pan-European/international organizations; both levels are usually structured as charities. Larger national and international PAs can employ full-time staff and develop long-term strategic plans with prioritized activities to achieve their goals.
Finding the funding and know-how to deliver
The advice and information services offered by PAs benefit patients, their families and carers, as well as healthcare professionals. To provide these services, money is vital, along with expertise to ensure the activities undertaken represent the best possible value from the patients’ perspective and reach the right target audiences to achieve the response needed.
As charities, PAs derive their income from public and corporate donations (e.g. through sponsored events, competitions, sales of merchandise etc.), grants from local and/or national government, and through partnerships with drug/medical device manufacturers, whose products are used by the patients represented by the PA. As government spending on healthcare contracts, public grants for PAs may be frozen or reduced, so other sources of funding become more important. Pharma companies can help PAs to achieve their goals by offering funding and/or sharing their know-how, while at the same time gaining customer insights and demonstrating commitment to patients. Modest investments can make a big difference; some examples of such win-win partnerships are given below.
Working together: PA collaboration examples
1. The helping hand for logistics
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As mentioned above, PAs do not just require funding. Planning and implementing successful PA campaigns requires specialist skills and resources, e.g. media and press liaison, translation of materials, access to meeting rooms with WebEx/videoconference facilities etc.
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If a pharma company can provide access to existing internal resources, the PA can reduce costs while the sponsor company demonstrates its commitment to patient care
2. The awareness day
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Many national/international PAs have a dedicated annual date to raise awareness of the disease(s) they focus on. The yearly events are themed and publicized in advance, so that fundraising and education events which tie in to the date can be encouraged
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Pharma companies can act as a joint-sponsor for the disease awareness day and assist with publicity, e.g. by issuing a press release to mark the event or by organizing a fundraising event among staff, supporting attendance of a PA representative at a congress to publicize the initiative etc. PAs may include a list of sponsor companies with their logos on the event website and the sponsor may be allowed to feature a logo for the event on their company website
3. The wide-reaching publication
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Review papers can highlight the pharmacoeconomic burden of a disease and/or the negative impact on quality of life when a condition is not optimally treated. Involving recognized experts in the disease as authors can boost the appeal of the content for peer-reviewers, while submitting such manuscripts to a national or international scientific journal can ensure that important messages reach the specialist audiences which a PA seeks to influence
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Ways in which a pharma company can support the manuscript development process include helping a PA to organize a meeting of experts to discuss key issues for patients, assisting with literature searches, and/or organizing editorial support to assist the authors in editing/revising their manuscript. Good Publication Practice 2 (GPP2) guidelines should be carefully followed to ensure that industry involvement in the project is transparent and does not bias the recommendations within the paper. Once published, reprints of the paper can be distributed through the booth of a sponsor company at congresses, helping to maximize the reach of the key messages
4. The political lobbying working group
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Political lobbying working groups consisting of representatives from complementary PAs, pharma companies and members of Parliament can develop focused and clear ideas for priority areas within healthcare budgets
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As all parties in the group work towards the same goal, this results in a strong collaborative force
5. The “real world” survey
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Patient surveys can quantify the scale of an issue and confirm whether progress is being made in improving care. Conducting a survey across several countries can help to identify areas where healthcare systems are not currently delivering high quality care and recognize opportunities to improve the situation (e.g. by identifying delays in diagnosis or referrals to specialist care, by confirming whether treatment offered is in line with national guidelines and standards of care etc.)
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Having access to the findings from such surveys can be invaluable in terms of understanding patients’ perspectives, so involving a pharma company as a joint-sponsor or partner to facilitate executing and/or communicating the results of such a survey offers advantages for both parties. As for projects involving publications discussed above, transparency is vital for patient surveys involving an industry sponsor to ensure credibility of the findings (e.g. by involving an independent steering committee)
Interactions between PAs and pharma companies
PAs and pharma companies have many interests in common, but there are rules covering collaborations between them laid down by bodies such as the Association of the British Pharmaceutical Industry (ABPI) and the European Federation of Pharmaceutical Industries and Associations (EFPIA), designed to ensure that the relationship between the two is seen to be ethical and transparent.
Such rules exist to preserve the independence of the PAs, which must not be perceived to be endorsing a particular company’s products. Conversely, a pharma company must not appear to be influencing the PA or the content of its published materials. It is essential to be aware of the rules and to abide by these when establishing collaborations, so that both partners are seen to be compliant and to be adhering to best practices in their professional dealings with one another. PAs themselves may also have their own internal policy on working with industry, so again it is important to check that any proposed projects will fit with such policies early in discussions.
PHASE II – helping PAs and pharma companies get the results they need
As a medical marketing and communications agency, PHASE II has many years’ experience in working with pharma and PA clients to achieve the best results for patients both in Europe and further afield. We have gained considerable experience in the methods listed above, and are committed to assisting in the improvement and maintenance of patient care.
If you would like to learn more about PHASE II and our experience in these areas, and how we may be able to help you raise awareness of the challenges facing patients and improve patient care, please contact us to discuss your needs – let us help you stay at the top of patient care.
