Make Patient Support Social—Online and Off

The management of chronic disease has seen healthcare move out of more traditional hospital and HCP office settings and into the homes, communities, and workplaces of patients. This means that patients’ efforts to manage their health often take place within a social setting that may include family members, friends, peers, and work colleagues.

The influence of social factors on health and well-being has been extensively studied across the behavioral sciences research literature. Social factors can be both health promoting and health negating. Those that are identified as health promoting can take a variety of forms, and are typically experienced by the patient as being:

  • Informational (e.g., advice and suggestions)
  • Instrumental (e.g., practical support) or,
  • Emotional (e.g., support that makes someone feel valued, understood, cared for)

The precise mechanism by which social factors contribute to health outcomes is not yet completely understood. Research suggests that social factors can benefit a patient’s health by:

  • Buffering against stress
  • Affecting mood
  • Increasing self-efficacy, and
  • Supporting change in health behaviors.

How can pharma leverage social factors in their patient initiatives?

While one could argue that the answer to this question is limitless, the reality is typically more conservative than that. Pharma-sponsored patient support initiatives are often restricted by budget, resourcing, and regulatory concerns. While understanding those challenges, the four strategies outlined below represent ways that social factors can be successfully incorporated into broader pharma-sponsored patient support initiatives.

1. Link patients into already established social support networks.

Existing social support networks can include those provided by disease-specific advocacy groups, or can be more generic and not necessarily tied to a specific condition. For example, online patient networks such as PatientsLikeMe encourage patient information sharing and can be a great source of support for patients when first diagnosed, or when starting out on a new treatment. Caregiver networks can also be helpful sources of social support especially in conditions where the caregiver plays a significant role in disease self-management, such as in the management of neurodegenerative conditions.

When linking patients to existing support networks, it’s helpful to provide more than just the link or contact details of these networks. Pharma should also outline the types of support each network can provide and case examples to demonstrate how the network has supported patients.

2. Establish a patient buddy system.

This approach involves identifying and training patient “buddies” who have been selected based on their experiences in living with a specific condition and taking a specific treatment. The provision of buddy support can be particularly helpful where stigma or misunderstanding surrounds a condition or treatment, and where patients may feel especially isolated and alone in their experience, e.g., a mental health diagnosis or living with a rare disease.

Buddies can support patients by reflecting on their own experiences and helping patients to problem solve challenges they may be facing in relation to their own disease management. Buddies can engage directly with patients through a variety of mediums, including digital communications and telephone. They can also be matched to the patients they support based on demographic characteristics such as age, gender, or location to further enhance a sense of shared experience and belonging.

3. Encourage patients to seek support from people in their immediate social network.

For this option, patient communications should provide a step-by-step guide of the actions necessary to effectively engage the patients’ own network. Patients vary greatly in their support needs. Those needs may depend on which illness-related (e.g., starting a new treatment; making lifestyle changes) and other tasks (e.g., childcare; financial matters) the patient is coping with, as well as the stage of their patient journey. Thus, a guide may include steps to help the patient define their own support needs, to identify the people in their network who can help with each need, and to identify when and how they will activate the support. Another important consideration is to help patients understand that not everyone within their immediate network will be able to offer all forms of social support, and that some people will be better suited to helping with some aspects over others. Moreover, there is evidence that negative or unwanted support, even if it is well intended, can have negative effects on patient adjustment and mood.1

4. Create a private, closed-group online community.

Although still a relatively rare strategy, there are instances in which pharma has created private, closed-group online communities for patients prescribed a specific treatment. While such initiatives can be challenging to establish and maintain, the benefits can be substantial, both for patients and for pharma. Patients can benefit by hearing from other patients, and in expressing and sharing their own experiences. Pharma can benefit from the insights gained through the collection of real world data that is grounded in the experiences of patients on their treatment.

Online patient communities can be readily established using existing social media platforms (e.g., Facebook) or can be constructed in a more personalized manner and include functionality or features of specific relevance to the patient population. Irrespective of the platform leveraged, the management of the community is a key consideration. Effective community management includes both the activation and prompting of relevant discussions among community members and the responsibility for moderating site content.

There are ongoing discussions as to whether it is necessary to monitor advice or information provided by patients since this could be biased or misleading. Some sites are monitored by specialist nurses or doctors as a way of trying to avoid the spread of alarming or incorrect information, but this needs to be done very carefully. Nevertheless, pharma could play a role in providing the resources for this type of professional input.

Summary

Social factors are important influences on health outcomes. If pharma seeks to support the patient in a truly holistic way, they shouldn’t neglect the social aspect of health. How pharma ultimately chooses to do this will depend on a range of factors and will include the balancing of patient need against operational constraints.

References:

1.Revenson, T. A., Schiaffino, K. M., Majerovitz, S. D., & Gibofsky, A. (1991). “Social Support as a Double-edged Sword: The Relation of Positive and Problematic Support to Depression Among Rheumatoid Arthritis Patients.” Social Science & Medicine, 33(7), 807-813.

  • John Weinman, PhD

    John Weinman, PhD is Head of Health Psychology at Atlantis Healthcare and Professor of Psychology at King’s College, London. Professor Weinman is recognized as one of the founders of modern health psychology and respected as a preeminent global thought leader in the field. His main research areas are cognition and health, communication and decision-making in healthcare, and self-management and self-regulation in chronic illness.

    • Kate Perry

      Dr. Kate Perry, MSc, PsychD, MNZPB is Director, Behavioral Science at Atlantis Healthcare. A registered psychologist with 20 years experience in the healthcare sector, Dr. Perry is responsible for the development of global evidence-based programs to promote behavior change among individuals living with chronic conditions.

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