8 Steps To Achieve The Cultural Change Needed For Co-Creation With Patients
By Diana Pankevich, Ph.D., director, innovation policy, Pfizer
Now more than ever, patients are informed and active about their health. Technological advances are equipping patients with real-time health data. At-home genetic testing kits have the potential to reveal future health risks. And the internet can help increase health literacy and connect patients with other patients. These, and other tools, can empower patients to take control of their health while enhancing their ability to engage with the healthcare ecosystem.1 At the same time, there are more patient-led efforts to create policies that are in line with patient interests to gain fair and equal access to treatments more quickly. Most of all, “Nothing about us, without us” is a consistent message that pharmaceutical companies, regulators, and others hear from patients.
Patient Centricity
Definitions of “patient centricity” are as varied as the number of pharmaceutical companies. At a 2016 FasterCures workshop, only 23 percent of participants felt there was broad agreement on what the term “patient-centered” represented.2 A more recent effort defined patient centricity as “Putting the patient first in an open and sustained engagement … to respectfully and compassionately achieve the best experience and outcome for that person and their family.”3 The same research highlighted four important principles for patients: education/information, co-creation, access, and transparency.
For a while now, companies have been increasing their engagement with patients and incorporating their views into company practices. Companies are reaching out to understand patient needs and preferences and integrating those with the science to inform decisions. At Pfizer, we have been actively engaging with patients for over two decades on topics from early discovery to clinical development and continuing for as long as the medicine is available. Patient involvement is a fundamental component of our commitment toward advancing science and delivering needed medicines.
Still, research suggests that the public doesn’t accept the idea that pharmaceutical companies are truly putting patients first. Rather “patient centricity” is seen as a buzzword instead of a culture where the patient voice is embedded into company practices.
Effecting Change
Change. It’s a word that can evoke a range of emotions. For some change is scary; for others, it’s exhilarating. For organizations, change is one of the few constants, but it can take time and a shift in priorities and resources.
How can companies build trust with patients? How can they advance their work in ways that meet patients’ expectations? Ways that address patient needs and reflects their priorities. For Pfizer, whose mission is to bring forward breakthroughs that change patients’ lives, one focus is on moving from engagement to co-creation with patients.
A few years ago, I made the transition from crafting policy recommendations for the U.S. government to advancing public policies for Pfizer. In some ways the transition came with a steep learning curve to understand the complexities of drug development. But I was also able to bring skills with me, including how to create strong public policies. The process of developing and implementing policies is fundamentally about effecting change. New policies require a strong evidence base, diverse stakeholder engagement, and finding innovative, but practical, solutions to problems.
I’ve found that, at its core, creating change in any organization requires knowledge, creativity, courage, and reflection.
Step 1: Establish Goals
One lesson that I took away from my time in the government was the importance of thinking about the end at the beginning.4 It is vital to have clearly defined goals from the start; goals help focus efforts, ensure alignment, and define success. For Pfizer, our goal is excellence in patient centricity.
Step 2: Research
With a goal in place, the next step is to develop a clear understanding of “the beginning” and build the knowledge base. We started by asking: what does successful “engagement” with patients look like? The key point here is to gather answers from both the patient and company perspective. If the answers are fairly aligned, then changes may be focused on fine-tuning current practices. But, significant gaps between the perspectives can help identify what opportunities and challenges exist for change.
Step 3: Analyze
If you recall, research suggests patients are interested in co-creation.3 That interest was reflected in research Pfizer conducted — we found that patients want to move from single engagements to sustained relationships. We learned that patients sometimes viewed our engagements as “first dates” without a second. This influenced both our final goal of sustained co-creation and the very process of achieving that goal. If the goal is excellence in patient centricity, then the patient should also be involved in the process of achieving that goal. Think of it this way: If companies are holding team meetings about changing how they work with patients and nobody is bringing patients into those conversations, the process has already failed.
Our research led us to ask: How can we co-create with patients in a sustainable way, developing new and strengthening current partnerships?
Step 4: Ideation
Ideation is the creative process of quickly generating new ideas. There are different approaches to this, but the general concept is: There is no bad idea, but really good ideas stand out. Many times, this process includes facilitators with white boards, post-it notes, markers, and colored stickers to help generate ideas. Ideation works best by including people with diverse perspectives. At Pfizer, we brought in people from different parts of the company, different therapeutic areas, and different countries. Our ideation process identified six preliminary ideas with group support to move forward; each focused on how to build sustainable co-creation processes with patients.
Step 5: Test
One possible next step might be further refinement to the point that ideas are polished. But if the focus is co-creation with patients, then the right approach is to take the preliminary ideas and pressure test them with patients. In our case, we heard patients note that sometimes they feel like they are brought in at the very end to rubber stamp ideas. Bringing ideas that are not fully formed to the most important stakeholders takes courage. By including patients earlier to help form ideas and set priorities, we are hopefully moving from engagement to co-creation. We asked patients which ideas we should prioritize. Which ideas should we scrap? Is there something missing? This input was used to identify the top ideas. Thinking back to the “first dates” feedback, we also took the opportunity to loop back to the patients we spoke with to let them know the top ideas that were moving forward.
Step 6: Buy-In
For any project, it is vital to have support, or buy-in, from the company’s leadership. The level of change being sought can influence the level and type of support needed. A project that is focused on cultural change throughout the company will require buy-in from the executive leadership team. Buy-in will empower the team to push for change, take risks, and help ensure their vision is aligned with other company goals. Leadership buy-in can also bring needed resources such as funding, staffing, and access to internal and external expertise.
Step 7: Pilot & Refine
There are two potential paths to take now. The first may be to develop a large program that can launch throughout the company. This takes time and resources—and may fail. The second pathway is to pilot the program, refining along the way. For Pfizer, this is the next step in our process. Pilots allow for faster real-world testing of the ideas while managing risk—the “try before you buy” approach. The ability to pilot projects with smaller resource commitments can be helpful in companies that are culturally more risk averse.
It is important to set points at the start of the pilot for reflection and refinement. The timing should balance the need to have gathered enough information for helpful feedback while not waiting until the pilot is so far along that the potential for refinement is lost.
If you’ve guessed that my next point will be about including patients in the evaluation process, you’re beginning to experience the mind-set shift that will create cultural change. Courage is needed again for honest reflection, even acknowledging failure.
Step 8: Scale
Once programs have been piloted and refined, they can be scaled up for launch. Here is the trickiest part of creating cultural change. The team leading the effort will have to act as champions for the change. Transparency into how the process was conducted will be important. Other colleagues are more likely to buy in if they understand the research, the ideation process, and feedback gathered, especially how patients were involved in the development. It’s an important reinforcing cycle, demonstrating the value of co-creation in the development of the programs that will create change toward greater co-creation.
As with each step, patient involvement and feedback are important once the programs are scaled. It is important that the process of reaching out to patients and obtaining their feedback continue at launch and after.
Cultural Change
These steps toward creating cultural change are just one approach, and it is important to tailor the process of developing and implementing change to the particular organization. With certain key principles, change can happen. First, it is important to develop a strong foundation of information; this knowledge base will define what changes are needed. Second, change means “becoming different,” and involving methodologies that push boundaries and encourage creativity can foster the development of innovative ideas. Next, change can require taking risks and acknowledging failure, both of which require courage. Finally, it is important to embrace processes that allow for honest reflection, from internal and/or external sources.
Most importantly, always remember, if you are changing culture to improve patient centricity, the patient must be a partner in the process of change and, ultimately, the patient voice will be embedded in the company’s culture.
Note: This article reflects the author’s personal opinions and not necessarily those of Pfizer.
References:
- See: http://www.eu-patient.eu/whatwedo/Policy/patient-empowerment/
- See: http://www.fastercures.org/reports/view/59
- Yeoman G, Furlong P, Seres M, et al. (2017). Defining patient centricity with patients for patients and caregivers: a collaborative endeavour. BMJ Innovations. 3:76-83.
- Kalil, T. (2017). Policy Entrepreneurship at the White House. Innovations: Technology, Governance, Globalization. 11:3-4, 4-21.
About The Author:
Diana Pankevich, Ph.D., is director, innovation policy at Pfizer where she serves as the policy lead for topics related to clinical trials, patient centricity, oncology, and expanded access. Before joining Pfizer, she worked at the White House Office of Science and Technology Policy (OSTP) where she supported President Obama’s Council of Advisors on Science and Technology on developing policy recommendations related to climate change, forensic science, and clean drinking water. Prior to OSTP, Diana was a program officer at the Institute of Medicine. She holds a Ph.D. in Neuroscience from Boston University and completed postdoctoral training at the University of Pennsylvania.