By Roslyn F. Schneider, MD, Principal, RozMD Patient Affairs Consulting LLC
We can and should celebrate advances in research and medicine that fundamentally changed the lives of people in my past pulmonary practice years in New York, allowing them to hope and live with HIV infection, lung cancer, lymphangioleiomyomatosis, cystic fibrosis, and more. Development of and access to treatments for each of these, in particular, are examples of how hearing and listening, advocacy, collaboration, and activism are intertwined with discovery, research prioritization, investment, and policy. However, history has taught us that voices have had to be loud and in unison to be heard, and unmet needs remain for people with these and many other illnesses.
Hearing the concerns of patients is a necessary start, but to affect change, we need to listen. One must have a reason to and want to listen. Listening requires attention to what is heard, processing it, and understanding it, not only because it is right, but meeting or exceeding peoples’ expectations is part of the definition of good business in the for profit and not for profit sectors of healthcare and research. Patients have made themselves clear through self-advocacy that they will no longer be willing to have surrogates serving as the only experts influencing the decisions that will affect them. They will not wait for an invitation to the table and will be seated next to corporations in one way or another.
Even listening, though, is not enough to change corporate culture. Empathy and deliberate action with a cycle of listening, dialogue, and learning are needed to deliver compassionate research and care that people will value.
Organizations, their boards, and people in those organizations have responsibilities and accountabilities to specific stakeholders. To drive a patient-centered culture, leaders and colleagues must listen to patients and find the connections so they personally can register why their culture should shift, how it may serve their organizational or personal purpose, and how it is relevant to those accountabilities. Doing so is a crucial component for individuals and groups to advance culture change and for it to be sustainable. Leaders should set expectations for listening and patient-centricity to provide the cues and reinforce how they connect to the raison d’etre of the organization.
For example, at the organizational level, the United States Business Roundtable, which includes global companies, in 2019 updated its purpose of a corporation to include, “We commit to delivering value to our customers. We will further the tradition of American companies leading the way in meeting or exceeding customer expectations.”1
Investors too, including Blackrock, are focusing on purpose when assessing business prospects, as a construct consistent with, rather than opposed to, profits.2
Involving Patients Can Drive Efficiencies
Operational efficiency for clinical research and development functions is served by listening to and involving patients along the life cycle of development of therapeutics. Examples have been shared across the industry and models developed that demonstrate potential for improved recruitment and retention and reduction of amendments and protocol deviations, each of which have a monetary value.
In clinical practice, primary care patients receiving compassionate and patient-centered care with shared decision-making have repeatedly been shown to have better health outcomes and with fewer tests and specialist referrals and, therefore, lower costs to the system than those with poorer communication with their physicians and healthcare teams. Some of these are highlighted in the aptly titled book, Compassionomics.3
Building A Patient-Centric Approach
The next complex building block for change is an approach to how to be more patient-centered. Without a strategic approach, you’re left with passionate, frustrated people who likely will become less engaged in the organization and leave or, worse, stay and disengage others. Process makes passion operational.
Entrenched organizational processes in the biopharmaceutical and healthcare industries are highly regulated for good reason, and they are not easy to update or change. Here, collaboration and co-creation of tools and guidances that have been developed will go a long way. A comprehensive review of the details is beyond the scope of this article. However, taking the time to explore the principles and what you can apply from existing tools in collaboration with experts from the patient community, tailored to your organization, will help ensure alignment across the ecosystem, save time, and conserve limited resources.
Some of these include the Patient Engagement Quality Guidance from Patient Focused Medicines Development4 and patient engagement tools from the National Health Council, Clinical Trials Transformation Initiative, Patient Centered Outcomes Research Institute, Center for Information and Study of Clinical Research Participation, European Patients’ Academy, FasterCures, TransCelerate, and others. These may be used to create or update internal processes and metrics to embed strategic listening at key points of the therapeutic development life cycle both before and after decisions are made.
Organizations should have a corporate-wide vision and guidance that is aligned with each region’s, country’s, and function’s guidances to retain practical specificity for the local needs and still allow the perception and reality of a company to have one voice on listening to patients.
As these processes are updated and put into practice, sharing, assessment, and collaboration internally and externally are foundational to continuous improvement and learning. In large and small organizations, the channels for sharing these types of practices may need to be created or included in existing sharing platforms. These should be updated periodically to ensure that the right people are included at the right time. Demonstration projects and results of systematic changes aimed at becoming a listening organization will fan the flames to light areas that may not yet embrace these concepts and practices. The more these practices spread, the more uncomfortable it will become not to listen and the more likely they will become business as usual.
Listening enables organizations to advance science with patient input. This is related to and separate from the science of patient input that is focused on more comprehensive, representative input and involvement that would have the rigor for submission for regulatory and payor decision making. While both are necessary, we can’t have the second without the first.
- Business Roundtable Redefines the Purpose of a Corporation to Promote ‘An Economy That Serves All Americans’. August 19, 2019. https://www.businessroundtable.org/business-roundtable-redefines-the-purpose-of-a-corporation-to-promote-an-economy-that-serves-all-americans
- Larry Fink’s 2019 Letter to CEOs- Purpose and Profit. https://www.blackrock.com/corporate/investor-relations/larry-fink-ceo-letter
- Trzeciak, Stephen. Compassionomics: The Revolutionary Scientific Evidence that Caring Makes a Difference. Copyright © 2019 Studer Group, LLC
- Patient Focused Medicines Development Quality Guidance. https://patientfocusedmedicine.org/the-patient-engagement-quality-guidance/
About The Author:
Roslyn F. Schneider MD, MSc, FACP, FCCP, Principal, RozMD Patient Affairs Consulting LLC, is a physician transforming healthcare quality and efficiency through human-centered design. Partnering with patients who are experts in what they need and want is a thread running through her distinguished career in clinical practice, academia, roles at Pfizer where she created and led Global Patient Affairs, and now as an independent consultant. Her clients range from large to start-up biopharmaceutical and health technology companies and she remains active in patient-centered workstreams with not-for-profit think tanks and patient organizations.