A Key Pillar of Successful Patient Groups: Building a Patient Data Strategy
For patient organizations, patient data is key to driving every aspect of their core mission and north star: improving patient outcomes.
Whether it’s more deeply understanding the needs and lived experiences of the patient community to support patients and families, advancing research and drug development, influencing policy and industry, or driving broader awareness for disease support and fundraising efforts, patient data serves as the foundation upon which successful advocacy is built.
Patient groups drive many initiatives in service of their mission, often with three primary objectives
In this piece, we’ll dig into how a comprehensive data strategy plays a critical role across all pillars of patient groups (hint: data is essential for more than registry building!) and some key considerations when establishing a data strategy.
The Role of Patient Data in Patient Groups
Proactively defining a strategy for how groups collect, manage, and work with patient data massively accelerates the efforts of a patient group, whether the small and mighty teams working on behalf of a rare/ultra-rare condition or for larger organizations serving patients with more prevalent conditions.
To effectively work with and support all stakeholders involved in the disease journey — patients, caregivers/families, physicians and sites of care, researchers, pharmaceutical companies, and legislators — patient groups must start with an understanding of the unique challenges, needs, and experiences of the individuals they represent.
Patient data, whether collected through formal/structured surveys and registries or more open-ended channels like direct patient interactions and patient-generated narratives, provides a view into community insights including:
Demographics
Symptoms
Diagnosis and disease experience
Treatment outcomes
Quality of life
Caregiver burden
Involving patients and families directly in opting in to share their data is critical, as these insights are dependent on patients providing appropriate consent for data uses.
Objective 1: Patient Community Engagement: Support, Resources & Education
Patients and caregivers often first engage with a patient group seeking information, resources, and/or support with a new diagnosis — not necessarily to sign up for research studies or registries. Ensuring that relevant and helpful support is available to these patients in these first interactions with the patient group can be enormously reassuring to patients who may be experiencing a multitude of emotions including anxiety, fear, lack of information/clarity, and more.
By understanding and leveraging basic data on each member of their community, groups can more easily meet community members where they’re at and support them more effectively. A newly diagnosed patient may benefit most from a different kind of messaging and support than a patient who’s been living with a disease for many years. Similarly, patients may engage with the group seeking varying types of support (disease management information, provider recommendations, access to clinical trials or investigational treatments, etc).
Data can also reveal community-level trends and patterns to inform educational/content strategy, or new patient programs. Looking at data across their community, organizations can hone in on prevalent side effects, gaps in care, or disparities in access to treatments. Organizations can use patient data to segment their population, identifying specific support or educational needs that may vary by age, gender, geography, subset of disease, stage of disease, relationship to the diagnosed patient, and more.
Examples can include:
Connecting members who share certain characteristics within specialized sub-support groups or peer ‘mentorship’/’buddy’ programs
Tailoring educational webinar topics to the most timely/relevant challenges or questions based on the community’s data and input
Prioritizing new recruitment/awareness channels to broaden reach to sub-groups who aren’t yet well represented in the community (such as diversifying social media presence, or equipping healthcare providers in particular geographies or specialties with informational packets and materials to connect patients with the patient group)
Objective 2: Enabling Research Frameworks and Funding
The most widespread use case for patient data in patient groups today is of course in registry-building, ranging from basic contact registries to longitudinal natural history studies. Patient groups, by spearheading the collection of patient data, can play a pivotal role in this process — especially in rare or poorly understood diseases, where patients can be difficult to identify in large EHR or claims data sets that research or pharma organizations may be using.
Fragmentation of both patient populations and research efforts can significantly hamper progress in understanding and developing treatments. For many conditions, particularly rare or ultra-rare diseases, patient groups are the most concentrated and directly incented parties aiming to increase research and improve outcomes for a specific condition or disease. With small patient population sizes and/or many competing priorities, other entities such as health systems and research institutions may not be able or willing to feasibly prioritize studies for these conditions, whereas patient groups are laser-focused on the most meaningful challenges and questions for their communities.
Central data collection efforts by the patient group can become a catalyst for truly meaningful research that directly benefits the community, rather than relying exclusively on inbound proposals from researchers or research using a site-driven approach (often limiting the patient population/representation that can be studied). By maintaining comprehensive patient registries and databases, patient groups (in partnership with relevant physician experts/key opinion leaders) can proactively support designing research frameworks to study the disease and help ensure that research efforts and funding are aligned with the community’s priorities.
These priorities might include advocating for research into specific, understudied aspects of a disease, or pushing for studies that consider patient-reported outcomes alongside clinical results. These patient groups and registries help to connect the dots and guide a holistic, thoughtful approach to disease research efforts broadly.
Finally, a robust approach to patient data for research can help to attract funding from both public and private sources for the patient group and future research studies, as funders are more likely to invest in studies with research questions informed by a) a real, demonstrable patient population and b) a relevant, data-driven research framework.
Objective 3: Advocacy and Awareness
Effective advocacy and raising awareness require a solid foundation of data. Whether lobbying for policy changes, influencing healthcare practices, or launching public awareness campaigns, data empowers advocacy groups to make informed, compelling cases across a wide variety of stakeholders.
Patient data provides quantifiable evidence to demonstrate the scale and impact of a disease — who is affected, how they are affected, and the financial/non-financial burden of those affected. It allows advocacy groups to present policymakers with concrete numbers, such as the percentage of patients with a disease affected by a specific issue or the average financial burden of that condition to patients and families. With information collected as part of their ongoing patient-facing work at the ready, organizations can better advocate for policies that improve patient care, help to increase funding for research, or advocate for expanded access to treatments.
Especially powerful are data-driven awareness campaigns in conjunction with patient/caregiver narratives and stories, which highlight the real-world experiences of patients. Sharing specific, individual patient stories and experiences along with population statistics and data can go miles in humanizing the patient experience and guiding a true understanding of the challenges and disease burden. Doing this is only possible with engaged, trusting patient communities willing to share their stories and experience with the disease. Data-augmented patient narratives can demonstrably increase the effectiveness of awareness and fundraising initiatives.
Considerations for Implementing a Data Strategy
Across the many ways in which patient data is useful for an organization, implementation should be planned thoughtfully across multiple dimensions — including the level of time, cost, and resourcing burden to the patient group in administration of their chosen approach.
Whether starting from scratch as a new organization, or incrementally adjusting and improving an approach over time, a well-defined data strategy includes several key considerations:
Patient Engagement and Consent: Patient data collection is only possible when patients and/or their caregivers are aware of the patient organization, trust that contributing data will be worthwhile and lead to more research insights / better community support, and provide their informed consent for data collection and use. Patients are more likely to participate in registries and surveys if they understand the purpose of the data collection, believe that they’ll receive some benefit (e.g. insights from the broader community around disease experience, published research on specific and relevant research questions, faster timeline to therapeutic R&D, etc), and trust that their data will be handled responsibly and ethically.
Patient Experience: As the primary contributors of data, whether through questionnaire responses, linking clinical data, or sharing information such as genomic data, information from wearables, or biosample data, the patient and caregiver experience must be a high priority. Is the platform for data collection easy to use? Are patient surveys and requests for data manageable and specific? Are patients receiving any benefit for their participation?
Data Collection and Management: Establishing standardized processes for data collection ensures consistency, accuracy, and validity for when the data is used and analyzed in the future. This includes determining what data is relevant and needed, how it will be collected, at what frequency, in what format, and how it will be stored and accessed over time. Non-trivially, organizations should understand the amount of time, effort, and direct cost that they’ll be taking on, both with initial implementation, and ongoing maintenance of the data collection processes and tooling.
Data Ownership: Ensuring clarity over data ownership is a critically important step when data collection tools and processes are being evaluated. Maintaining ownership, control, and transparency of the use of this data by the patient organizations themselves can safeguard the interests of and build trust with the patient group community. Groups should consider data ownership policies allowing for both ongoing and future community and research initiatives. Additionally, full data ownership by the patient group (rather than a 3rd party) can ensure that patient groups have direct control over sharing and (if relevant/desired) monetization of any data via fees for industry use.
Data Privacy and Security: Implementing strong data protection measures is essential to safeguard sensitive patient information. This includes encryption, robust access controls, and compliance with relevant regulations such as HIPAA in the United States or GDPR in Europe.
Data Sharing and Collaboration: While retaining control, advocacy groups should also consider how and when to share data responsibly, to advance research and improve patient care. This includes establishing a process for assessing and approving requests for data use, clear guidelines for data sharing agreements and financial agreements (if/where relevant) with data users, and ensuring that any collaborations align with the group’s mission and the trust that patients have given.
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Patient data is not just something to be collected for a registry or member list and wait for it to be useful — it is the key to unlocking the full potential of all patient group efforts. With a thoughtful and robust data strategy, patient groups can position themselves to be proactive, rather than reactive: better understanding and serving the needs of their community and broader stakeholders, in engagement, research, and advocacy. Across all parts of an organization, meaningfully leveraging data can directly maximize a group’s impact on improving patient outcomes.
