I met Dawn Richards and Anne Marie Wright at a recent pharma conference. I was impressed by how they are serving pharma and healthcare and invited them to publish a guest blog here. Enjoy.
Have you ever stepped back and thought about why the pharmaceutical industry does not engage its end user until so late in the game – if at all? Would any other product-based, profit-driven industry do that? Your industry, pharma, takes a huge risk with drug discovery and development, without actually forming relationships with patients – the actual end users – until close to the end of your product development cycle. How can the industry continue to leave patients as such a huge (missing) part of that equation? Lastly, consider that pharma’s focus is solely on the physical symptoms of a disease, rather than the person your treatments are made for.
Have you ever heard of the term patient opinion leader or POL? This is a parallel concept to key opinion leader (KOL) except, you guessed it, that leader is a patient! These patients represent other patients and leaders in their own patient communities – just like physician KOLs. As physician KOLs are medical experts in disease areas, POLs are experts at actually living with and adjusting to the new reality of a chronic illness. These patients think outside of the ‘me’ box of their own experiences and are articulate, understand how to best communicate their experiences, generalize the disease experience where required, and are strategic thinkers. One of the things a POL might tell you is that simply treating their disease is not enough. Patients want to be treated as a whole person – chronic illnesses affect every aspect of life, so why would only physical symptoms be addressed?
We hope this now has you wondering how you might work with POLs to better gain their insights about living with a chronic illness and unmet medical needs from the patients’ point of view. Our challenge to you is to consider and act on one way to engage patients, so here are some examples:
1) Reach out to a patient organization in a disease area that your company works in. Talk to someone at that organization about how you can work with their group to create a dialogue about their collective experiences with their disease, including everything from their journey to diagnosis, to how they’ve adapted to their new normal of living with a chronic illness. Can you work together to build the Patient Journey that your own company is creating around a new and exciting product that may ultimately circle back and impact this same organization?
2) Have POLs attend internal team-building and educational functions and events. If you are not sure how to contact a POL or who one is in a disease area that your company works in, consider reaching out to either a patient organization or the charity that represents that disease, or reach out to us to help you! We’re well connected in the patient community and will be able to best identify a patient who will be willing to speak to and hopefully inspire your team. Think about building on that relationship so that people in your organization may meet and interact with that patient more than once.
Creating a level of comfort between the POL and your team will invite better and more in-depth questions and dialogue from which both sides can learn. Consider moving beyond the usual patient story forum and think of creative ways your team can interact with the patient. Maybe you create a panel of questions in advance, maybe you ask the POL to give your audience a quiz about their understanding of their disease, or maybe you even invite a KOL and a POL to talk to your team as part of the same session. Be creative!
3) Contacting us to help you develop a strategy to better engage patients and POLs in a meaningful way for results-driven outcomes. Would you consider inviting a patient to a strategic planning meeting? How about having them talk at a senior management team function? What about having them take part in an offsite brainstorming/team building event? There are lots of outside the box ways to think about having patients/POLs involved. It will require more of a commitment than a 20-minute presentation, and it will come after first educating your colleagues about the basics of a chronic disease and one’s journey with it throughout their lifetime.
A trustful relationship needs to be developed first to tease out the really important parts of the patient experience – the parts your team may not glean from a basic patient presentation. We guarantee that it will be worth it, and it will firmly cement a new concept of really being patient-focused when you consider working with a patient/patients on a more regular, strategic and meaningful way.
You can see from our LinkedIn profiles (Dawn, Anne Marie) why we’re so motivated to do this work and why our professional training and skills complement our work to build you tailored programs that will enable you and your team to achieve success.