Patient Partnerships Under Scrutiny

These are tenuous times for nonprofits that rely on strong relationships with pharmaceutical companies to help educate patients about disease prevention, diagnosis, and treatment. While pharma values giving and contributes millions annually to nonprofits, philanthropy is often the first item to be cut from the budget because of: 1) the limited ability to measure program success on patient outcomes; 2) the increasing and unfortunate scrutiny of patient advocacy partnerships by media and legislators; and 3) a lack of perceived strategic value of donations.

Companies are simply spending less on nonprofit partnerships, and many nonprofits are struggling to survive. Some, like Gilda's Club and The Wellness Community, Fertile Hope and Be Strong, have even merged resources or products and services to combat the recession and stay afloat.

No Way to Measure Advocacy

For pharmaceutical companies, quantifying or qualifying the impact of nonprofit partnerships is difficult. There are currently no established industry-wide measurement approaches for advocacy partnerships. In addition, many nonprofits will say that they are reluctant to take valuable program monies and earmark them for measurement when monies are so limited to begin with.

When industry provides "unrestricted" grants to nonprofits, it isn't ethically appropriate—based on the parameters of the grant—for a company to encourage the nonprofit to measure the program. But political and economic realities are changing perceptions, and measurable results are on the minds of policy leaders, nonprofits, and industry. Even the Obama administration, through its Social Innovation Initiative, is focused on elevating and supporting results-oriented, innovative nonprofits.

Despite having the political will to forge measurable partnerships, companies have been criticized by policymakers and the media for focusing on ROI, and for currying favor with nonprofits to achieve brand agendas. For instance, there is the recent scrutiny of the National Alliance on Mental Illness (NAMI) for taking 75 percent of its funding from industry.

Michael Fitzpatrick, executive director of NAMI told The New York Times that his organization would advocate for access issues even without pharmaceutical funding, and that he will not take such a high percentage of industry funding in the future. But for nonprofits and industry alike, NAMI's challenges are a bellweather of future ties and an indicator of the need for greater transparency and diversification in funding.

Lack of Strategic Focus

Despite accusers who paint industry as having goals that are too aligned with marketing, most philanthropy falls on the opposite—less strategic and more "emotional"—side of the spectrum. Even beyond the healthcare industry there is a general lack of strategy around giving.

Of course, most donors will say that they give because of a personal relationship to a cause. This emotional giving prevents philanthropy from solving some of the world's biggest problems, notes Steven H. Goldberg, author of "Billions of Drops in Millions of Buckets." According to Goldberg, "Fundraising today is like an unending series of downpours in which there are hundreds of billions of raindrops—donated dollars—falling into nearly 2 million nonprofit buckets ... The allocation of rain into buckets isn't exactly random, but it's not entirely logical, either."

Goldberg's thesis is confirmed if one looks at the Web sites of the top pharmaceutical companies, where you see $500, $1,000, and $5,000 donations given to nonprofits for "annual fundraiser," "holiday magic fundraiser," "stars of hope walk," etc. Shouldn't industry be using its funds in more strategic ways? And shouldn't nonprofits look to industry for more powerful, lasting contributions?

Evidence-Based Programs and Patient Impacts

In discussions with industry and nonprofits alike, measurable results—"return on patient impact," "return on reputation," or "return on societal impact"—are on the minds of those closest to advocacy, and with good reason. A number of chronic and deadly diseases account for some of our nation's highest healthcare costs, and these diseases—cancer, diabetes, hypertension, mental illness, and asthma—are priorities for both industry and nonprofits.

Many programs that have been undertaken in communities across America to deal with these issues have proven they can move the needle. One example is the "Asheville Project," begun in 1997 to deal with the rising healthcare costs and productivity losses in the city of Asheville, NC. This project has been a collaborative effort between the public and private sector involving the APhA Foundation and North Carolina Center for Pharmaceutical Care (NCCPC). The project engaged local pharmacists as health "coaches" to alleviate rising healthcare costs due to mismanaged diabetes and poor medication compliance; it targeted Asheville municipal employees suffering from diabetes.

After five years, annual average claims decreased by $2,704 per patient in the first follow-up year, and by $6,502 per patient in the fifth year. Savings on annual direct medical costs ranged from $1,622 to $3,356 per patient. In addition, the program led to increased productivity valued at $18,000 per year, according to Triple Solution for a Healthier America, supported by GSK.

This program has been replicated in other disease areas such as asthma and cardiovascular disease, with good results. Other programs in mental health, autism, and infectious disease transmission have also shown substantive results in enhancing patient care. Such programs could be adapted, replicated, expanded by companies and nonprofits in partnership to combat some of our nation's thorniest health issues. For nonprofits and industry alike, finding ways of partnering that are effective, accountable, and worthy of public trust is a pressing goal.

Nine Key Takeaways

As nonprofit–industry partnerships move to a more evidence-based focus, here are some practical tips for those who want to raise the bar for advocacy.

» 1. Learn what has come before. When developing an initiative to reach patients, research existing programs and approaches that have worked, and incorporate that learning into future programs. When feasible, expand existing programs rather than inventing new ones, so effective programs can have greater impact.

» 2. Collaborate more. With limited resources coming from pharmaceutical companies, few organizations have the financial wherewithal to go it alone. Nonprofits need to diversify their funding sources for credibility sake, so finding like-minded companies who can share in the costs of a nonprofit program increases the impact and decreases any one organization's investment. Companies should encourage nonprofits to go after complementary funding sources when exploring nonprofit partnerships.

» 3. Study the principles of health motivation. The principles included in this widely studied model are still relevant in forging strategies focused on behavior change.

» 4. Choose strategies with lower cost and highest impact. Social media is allowing for more targeted, cost-effective, and measurable communications approaches. In-market events are proving too tough to execute cost-effectively for some target audiences who are constantly on the run. Big and expensive doesn't always mean more successful.

» 5. Develop motivating messages and engage messengers who reflect the values and beliefs of your target audience. When budgets allow, test your messages. When budgets don't allow, at the very least, conduct informal one-on-ones with a smaller audience of your target.

» 6. Engage grassroots and social media ambassadors. They will help to expand the impact of programs. Give them the tools and techniques to effectively reach their peers.

» 7. Look beyond the PR burst. This can be a focal point of company/nonprofit partnership. Push for programs that have an end patient benefit beyond awareness.

» 8. When establishing relationships, consider the long term. Programs that last only a few brief months or one year don't really make a difference. When feasible, commit to multi-year campaigns that show more measurable results.

» 9. Define measurable goals. Do this at the beginning and evaluate measurable outcomes at midway points so programs can be course-corrected for greater impact and greater cost/benefit.

The end goal is better patient care, longer term relationships, and mutually fulfilled objectives. Advocacy can become more vital if we all take steps to make it more measurable, more strategic, and more sustainable.

Ann Moravick is president of Rx4good. She can be reached at ann.moravick@rx4good.com or on Twitter: Rx4good