Working With Patient Associations: What Can You Do Today?

1. Working With Patient Associations:What Can You Do Today? Karen L. Miller Advocates & Alliances LLC

2. Working With Patient Associations:What Can You Do Today? Some Basics of Working With Patient Groups: • Myths and Realities • Life Cycle of Patient groups • Functions of Groups • Why Partner? • Do’s and Don’ts • What you can do!

3. Patient Association Myths • Myth 1: • Patient associations do not wield much influence in the public sector. • Reality: • Input from patient associations is increasingly sought from legislators and regulators prior to making important policy decisions, and industry often seeks their advice in the launch and marketing phase of new products.

4. Patient Association Myths • Myth 2: • Patients are not sufficiently educated in science and medicine to truly understand their disease pathology and appropriate treatments. • Reality: • Today, particularly after diagnosis, many patients understand their disease as well or better than some health care professionals. A well established patient network has contributed to this phenomenon, as has easy access to a wide array of technical and generic information on the Internet.

5. Patient Association Myths • Myth 3: • Patient associations have limited visibility in the public eye, and consequently little clout. • Reality: • Patient associations are increasingly visible today, ranging from areas such as concentrated media outreach to well-attended special and fund-raising events that are designed to raise awareness as well as funds for research. The leadership team are often considered “thought leaders” in the disease community

6. Patient Association Myths • Myth 4: • Patient associations look to their corporate sponsors and partners only for money. • Reality: • While patient associations do need and welcome cash contributions, often they need just as often technical or professional advice, in-kind support, and information about a company’s experimental compounds and marketed products to share with their constituencies.

7. Patient Association Myths • Myth 5: • While a corporate partner can help nonprofit patient associations in a variety of ways, there is little or no quid pro quo for the corporate partner. • Reality: • Patient associations can help further product marketing goals in a variety of ways, from helping to recruit for clinical trials, to publicizing information about new drugs in their newsletters, to assisting with crisis communications.

8. What Is Good Patient Group Relations? Good Patient Group relations establishes positive working relationships with influential patient and professional associations that share a company’s goals and that can champion a company’s products.

9. Understanding Patient Groups: The Organizational Continuum • Stages of Development • Birth • Youth • Maturity

10. Birth • Concerns • Creating the organization • Surviving as a viable entity • Issues • What to risk • What to sacrifice • Skills • Staffing, communication, funding, program development, problem solving, experiential learning

11. Youth • Concerns • Gaining stability • Building reputation • Issues • How to organize • How to review and evaluate • Skills • Delegation, team building, long-range planning • Quality control, evaluation, research, recruiting

12. Maturity • Concerns • Achieving uniqueness, adaptability • Contributing to society • Avoiding complacency • Issues • Change • Share • Skills • Leadership growth/development • Flexibility • Vision, taking the message to a wider audience

13. Patient Groups Commonly Serve Four Functions • Information/Education/ Fundraising for Research • Inform/educate about risk factors, screening, disease, treatment options, follow-up, clinical trials, latest research • Policy/Advocacy/Awareness • Influence elected/regulatory bodies’ decisions about research funds, reimbursement, patient needs via lobbying, testimony, direct mail campaigns

14. Patient Group Functions • Support • Provide medical and/or psycho-social support to patients and families • Combination of any two or all of the above • Many organizations serve more than one function

15. How Patient Groups View Pharmaceutical Companies • As creators of miracle treatments that can help their patient constituents • As science-based companies that are trying to make a profit and do the right thing • As profiteers of expensive treatments that their patient constituents cannot afford or that leave those patients with unwanted side effects

16. Why Patient Groups Partner with Corporations • Financial support • Technical assistance and promotional support • Access to treatment information • Networking opportunities • Board and committee service • To ensure constituents needs are met

17. Why Corporations Partner with Patient Groups • Patient groups are: • A trusted source of information • For members/patients via newsletters, Web sites, brochures, and treatment-related meetings • For media, they are a knowledgeable source with first hand disease experience • An excellent way to build relations with opinion leaders in board and committee service • A means of making informal contacts in relevant communities

18. Why Corporations Partner with Patient Groups • Patient (and other consumer) organizations are influential in local, regional, and federal decision-making processes: • Participate in development of screening and treatment guidelines • Serve as consumer voice on medical and health care advisory panels • Influence drug approval, use, acceptance and compliance

19. Why Corporations Partner with Patient Groups • Patient groups can often: • Understand market dynamics that data do not describe or explain • Enhance marketing efforts • Add credibility to marketing programs • Assist in crisis communications • Provide media spokespeople to help communicate corporate messages • Communicate credible and unbiased information to patient/professional constituencies • Offer counsel and input in corporate decision-making

20. The Big Do’s of Patient Group Relations • DO treat them as customers, not vendors! • DO consider having them develop patient education materials, they can say things we can’t. • DO ask them to review patient education materials • DOask them to help with Disease Awareness Programs • DO understand that their leadership and volunteers have varying levels of sophistication and influence.

21. The Big Don’ts of Patient Association Relations • Don’t think in only in terms of product promotion – they offer lots beyond that. It’s all about the relationship! • Don’t assume they don’t understand medical language. They are often very sophisticated consumers. • Don’t assume that just because they don’t think in terms of ROI, that they can’t offer value. We may be business experts; they are patient experts. Their perspective is very valuable.

22. The Big Don’ts of Patient Association Relations (con’t.) • Don’t sell your product to them. They don’t care about your sales or profits; they care about meeting patient needs. • Don’tlet your agency establish the relationship on your behalf, or query them when preparing a pitch. Often they don’t like giving agencies their expertise; they’d rather work with you directly.

23. The Big Don’ts of Patient Association Relations (con’t.) • Don’t start too big. Start small and let the relationship evolve. • Don’t make decisions in a vacuum. These groups are well-connected. These groups rely on long-term funding to survive, and they value stability and long-term relationships.

24. To Begin Relationship Development: • Use the company Ally Development function as a resource. • Listen with an open mind. Don’t expect advocates to think like you do. • Respect their medical knowledge. • Expect to be challenged on controversial issues. • Tone down “corporate” image – put yourself in their shoes. • You’re in it for the long-term. Make a good first impression.

25. To Maintain Productive Relationships: • Participate in group activities, especially those supported by your company. • Offer assistance on a regular basis • Arrange “get-togethers” at national meetings • Maintain routine, ongoing communication and relationship • Recognize that it takes time

26. What You Can Do Today! Convene Working Groups/Advisory Panels to: • Share current data • Share marketing ideas • Gather input • Solicit support

27. What You Can Do Today! • Include on Press Release distribution Lists • Provide indirect communication if necessary (through physicians, institutions) • Secure their help in disease/treatment awareness materials, programs • Include in marketing research studies • Teleconference updates • Encourage including information on the company and its products in newsletters, websites • Encourage Global Sharing

28. It’s All About the Relationship! Treat them as you would like to be treated!