Patient engagement a new frontier for drug makers


Leave a Comment

Enter the debate: reply to an existing comment
3 comments

  1. Melissa McGlashan

    Having one group receive treatment while a control group receives placebo doses is the correct way to do this research; however, denying the control group treatment is unethical. While this article points out that trust needs to be built between patients and Big Pharma, this trust is a long way off. Far too many times we have seen drug companies buy the rights to a drug just to raise the price, sometimes astronomically. When asked, ‘How could you in good conscience do that?’ the answer is always the same. ‘We are not in the business of helping people. We are in the business of maximizing shareholder profit.’ Patient engagement cannot be recommended until a complete paradigm shift occurs. This shift needs to be away from maximizing shareholder profit and towards patient care while making a fair profit. This paradigm shift will not occur in my lifetime.

  2. Zal Press

    The question remains how does pharma understand what patient centricity really means when the business priority is to focus on what matters to shareholders not the real stakeholders. To start climbing out of this ethical dark hole pharma can take guidance from the increasing volume of evidence around patient experience coming from places like The Beryl Institute and the National Academy of Medicine. Understanding how to engage with patients is no longer just a “nice to have” but for leading healthcare institutions and businesses it’s now core business. This evidence reinforces a path to patient engagement through a commitment to these four pillars:

    (1) Visionary and purposeful leadership. Leadership sets the tone for a top down shift in organizational culture. A dedicated role to patient engagement in the C-suite that’s funded and supported is an example of that commitment.

    (2) A thoughtful definition of patient engagement that draws on the values that leadership has committed to. Employees can’t believe in something if there isn’t a clear organization wide definition that they all understand and share.

    (3) Investment in workplace culture. Change isn’t easy for anyone. The investment in human capacity is a top priority. If staff is to make good decisions based on a solid definition rooted in a new value system, then they need to be supported throughout this transition to acquire the skills and tools they will need to be successful in the new environment. They will end up making better decisions with patients for the company.

    (4) A Language of Partnership. The dialogue with patients needs to shift from the current transactional model to one that is interactional. This new method of conversation and engagement is an acquired skill. Both patients and staff need support to understand how to apply the principles of transparency and collaboration to create safe spaces for authentic interaction.

    It’s not magic. It is hard work though, won’t happen overnight, and will be difficult for many organizations. Six years ago companies interested in real change would have found themselves alone in a wilderness. Since then empowered patient experts who are capable and qualified like Dawn Richards can help companies navigate to a more authentic and meaningful level of engagement with patients that will contribute to a sustainable and compassionate health system. With the evidence now strong and clear that successful outcomes are associated with an organization’s level of patient engagement activation, there is no longer any excuse to not make it core business.

  3. Terence Young, Chair, Drug Safety Canada

    In the late 1990s a group of telemarketers out of Quebec were calling patients in a free trial or Remicade, at least some for off-label use for Crone’s Disease, and told that their free trial must end soon. Remicade is given by needle twice a month at a cost of $ 2600. and was not covered by the provincial formularies. 11% of patients on Remicade will get cancer. The patients were sent form letters to rewrite and send to their provincial Minister of Health as if they were their own words pleading him or her to put Remicade on the formularies because the drug helped them and they were about to be cut off. Sleazy. This was discovered when the Ontario Minister of Health was chatting with his counterpart in Manitoba who was getting the exact same letters. Patient engagement is about using patients to sell more of the highly expensive drugs and is generally unethical. They don’t need patient help designing clinical trials. Decisions regarding which drugs to develop are made for purely economic reasons. Making patient groups think they have say in that is dishonest and cruel. They want their names and email addresses to build relationships like any other business. BTW when a patient gets harmed by a drug the drug companies never admit their drug caused harm, and always blame the patient and the doctor in court, real fair weather friends! If they have a direct relationship with a patient that defence won’t stand. Can’t blame the doctor. That’s why they are being cautious. Drugs are not cars, or real estate or life insurance. There should always be a learned intermediary between them and their end customers, and that intermediary should not be taking any cash, shares, lunches, baseball tickets, or free trips or free samples in exchange for his or her signature on a prescription pad, which is still common. Nor should they act as shills for Big Pharma to bird-dog patients to target for those “relationships”.

Submit a comment