“Everybody wants to go to heaven, but nobody wants to die!”: Strategies for patient advocate partnerships in the healthcare marketplace

In this article, the founder and president of The Prostate Net, Virgil Simons, presents his ideas on how pharma companies can come up with a strategy in order to achieve successful patient advocate partnerships.

Too often we’ve seen those situations wherein the wishes of success are maximized, but without the concomitant due diligence and hard work necessary to achieve them. This condition is the manifest reality as exemplified in the title of this article: “We all want to get to Heaven, but we don’t want to die!” How easy it would be to conjure up exceeding sales goals and market objectives by just wishing it could be.

Such is the situation faced today in the world of pharmaceutical and medical device companies. There is the emphasis on the “patient”, in creating “patient-centric” standards of care, improving “patient services” and the big one; “empowering the patient”. So, given these imperatives, why have European pharma not become more engaged with the patient?

Obvious to all are the regulatory statutes preventing direct-to-consumer contact, but yet somehow our colleagues in the US have managed to achieve just that. How? The answer is simple: they talked with the “right” patients. Globally, pharma is concerned with achieving certainty be it in drug efficacy, market share, etc. but drug regulatory guidance is far from certain in delivering it, as noted in a recent PM360 article. We have seen greater engagement in the US by individual pharma companies such as Sanofi’s “Partners in Patient Health” (see figure 1), GenZyme’s “Patient Advocacy Team”, and virtually all other with senior level managers of Advocacy Relations.

Figure 1: Sanofi’s ‘Partners in Patient Health’ page is an example of US pharma’s patient engagement efforts

The comment might be that we talk to patients now, through our contacts with physicians, with some patient supports groups, with advocacy organizations. But, again the question must be asked: “Do we have the right partners in place and do we have true dialogue with them?”

“Why have European pharma not become more engaged with the patient?”
Figure 2: There is a new model of patient and pharma engagement in place today

This new, desired matrix of engagement is illustrated in figure 2 and shows the attainment of both commercial and social objectives dictates a different type of advocacy relationships. It requires a “professional” level of Patient Advocacy that can work as partners with pharma in meeting mutually shared objectives. But, this requires vetting the capability of those potential advocate partners in the same view as a potential client or supplier:

1. Structure:

– How long they have been in operation?

– Are they government certified or registered as a non-profit or NGO organization?

– Are they local, national or international in scope?

– Do they have professional or volunteer management?

– What is their financial status and how are they funded?

2. Professional associations:

– Are they members of industry or professional organizations?

– Does their Board of Directors have relevant industry, medical professional, skills representation?

– Do they have collaborations with other patient advocate organizations?

“…if successful in your selection, advocates can become your “voice” in speaking to the patient communities…”

3. Initiatives:

– Have they demonstrated the ability for strategic planning?

– Do they have a history of effective community / patient engagement?

– Is there a capability for diverse vehicles of communication?

– Have there been examples of effective collaboration with pharma to meet both patient and industry objectives?

– Do they have an understanding of the research process and have they been actively involved?

– Is there an on-going, or project specific, system of measurement, evaluation and funding reconciliation?

These are but a view of the basic and preliminary factors of consideration in selecting advocate partners; however, if successful in your selection, advocates can become your “voice” in speaking to the patient communities, your “allies” in clinical research recruitment, your “facilitators” in communicating drug development and encouraging appropriate dialogues between physicians and patients as to adoption of new therapeutics. Patient Advocates are not patients without portfolio, are not just consumers of health services, are not competitors in gaining share-of-mind with your customers, and definitely not only “good people, doing good work, so give us money”, but can be true partners in meeting shared objectives of increasing market expansion and enhancing the standard of patient care. Ours is a shared future, let’s talk about it!




About the author:

Virgil Simons is the Founder & President of The Prostate Net, a non-profit patient education and advocacy organization committed to providing credible and actionable information that will minimize the negative impact of prostate cancer. Using the experiences gained as a 18-year survivor of prostate cancer and a patient advocate, he has built, over the past 16 years, an international organization that uses a matrix of informational and interventional techniques to address disease risk awareness, early disease interdiction and advanced stage disease management.

Mr. Simons is a member of the American Association for Cancer Research, American Society of Clinical Oncology, European Association of Urology, American Public Health Association, European Society for Medical Oncology, Minorities in Cancer Research, and is the Chair Emeritus (FY2012) of the Congressionally Directed Medical Research Program for prostate cancer. He is a member of the External Advisory Board for Northwestern University Medical Center’s Prostate Cancer SPORE, the External Advisory Committee of the Center for Clinical Research at Clark Atlanta University, and the Advisory Board of CURE magazine.

Mr. Simons has received several awards in recognition of his work on behalf of those affected by a diagnosis of prostate cancer including the Cancer Leadership Award from the American Association for Cancer Research, the Catherine Logan Award for Service to Cancer Survivorship from the National Coalition for Cancer Survivorship, and the HOPE AWARD of the Intercultural Cancer Council. Prior to his involvement in healthcare, he had an extensive career in the textile, financial services, international trade and retail markets as a senior executive and/or entrepreneur. He has completed course work for an MBA, and recently received a MPA degree concurrent with the public health mission of The Prostate Net.

Website: www.theprostatenet.org

Email: virgil@prostatenet.org

How do patient advocates benefit pharma, and vice versa?