|28th May 2020
Engaging a patient, when it’s relevant, means involving them in the right projects, finding appropriate tasks for them to undertake, and consulting them at relevant times during the project lifecycle. This will lead to more meaningful and productive collaboration. From the outset, companies need to identify the points along a project timeline or within a strategy where they could engage with patients. This could include gaining initial insight through patient interviews, asking patients to author content, involving them in clinical trials and developing beyond -the-pill services.
After you have developed the engagement plan, consider the following five principles for ensuring you are truly patient-centric and your engagements provide the most benefit for both the pharmaceutical company and the patient.
Patients need to be treated appropriately during the engagement. They are people first, with the same day-to-day challenges as everyone else. They might have jobs, families and other commitments, and they are dealing with health conditions that could impact their ability to dedicate time to the project.
Be mindful of their needs and lives outside of their disease when asking them to commit their time. Clarify the level of commitment required. For example, are they expected to put their lives on hold to engage with the project?
Consider patients’ financial circumstances. For example, some may not be able to afford to wait for reimbursement of expenses, especially if they are not financially independent. Therefore, it’s worth considering paying upfront for things like travel.
One of the most useful types of support I’ve had was pre-paid meal vouchers when I was participating in an internal meeting for a pharma company. I could use the vouchers at any restaurant in the hotel I was staying in, including room service, and it meant I didn’t have to wait for reimbursement.
A patient may also need to be accompanied by a companion or caregiver, and this should be made as easy as possible. Logistics, accessibility and support all make the engagement less burdensome.
The most important thing is to ask the patient. Companies should start a dialogue and be sensitive to the different requirements of individual patients. Patients will remember how they have been treated. Those who have not enjoyed participating in a project or feel they have not been treated well will be less open to future collaborations.
Treating a patient well goes hand in hand with treating them fairly. Compensation is always a hot topic. Can a patient be compensated? Should they be compensated? How much should they be compensated?
According to various guidelines at national and European level, patients can be and should be compensated for their time. In practice, however, there are still differences in how companies compensate patients and what their fair market value rates are.
From an advocate perspective, there are three key areas to consider when determining compensation:
• Should we engage the patient as a patient or as someone providing a business service?
• If we are engaging them as a patient, then what type of patient are they? A pro-patient, an expert patient or a patient by experience? (see p.9)
• What’s the scope of work? Engaged patients provide insights that only someone living with a health condition can offer. It’s different from providing a business service, for example, advice on patient engagement strategies. Compensation should reflect this.
Likewise, compensation should reflect a patient’s experience, expertise and skills, just like it does for healthcare professionals, and it should reflect the scope of work. Consideration should also be given to preparation time, travel time, briefings and debriefings.
Another key area for good collaboration is transparency. Outline what you expected of patients along with how they will be engaged, clarify aims and objectives and set out timelines.
Patients should be certain of what they’re committing to. Where relevant, explain standard operating procedures to ensure patients aren’t left confused or frustrated by internal processes.
Meeting legal and compliance requirements do not automatically ensure you’re acting appropriately. It’s important to consider how you are treating the patients, including whether they understand the legal documentation.
Finally, engagement needs to be compliant. Usually, I hear compliance being used as a reason to say “no” and “we can’t.” We need a shift in mindset where compliance is used as an enabler for fair and transparent collaboration.
To see more articles about solid patient engagement, download our latest Perspective digital magazine 'Perspective: the patient edition'
|27th August 2020
Precision and personalised medicines are more than products, they are services in their own right. So, how should pharma approach this uncharted territory to ensure targeted therapies work for patients?