MemoryWell Life Stories

Person-centered care, which is responsive to individual patient preferences, needs and values, is a key pillar of healthcare quality. A positive patient-provider relationship, enabled by trust, mutual respect, and effective communication, is a cornerstone of person-centered care. Care coordination and continuity are also vital aspects of person-centered care.

 While healthcare organizations are looking to improve healthcare outcomes through the implementation of person-centered care models, countless barriers exist in the current system. Busy providers are increasingly asked to do more with less, and the inertia of the system is to spend as little time with each patient as possible. As a result, many patients feel anonymous and disconnected from their healthcare providers. Additionally the trend in medical education is toward specialization and fewer Americans have a primary care provider, a critical entry point to preventive health and care coordination.  

The United States healthcare system is facing low participation in preventive health and low patient satisfaction among the population as a whole, compared to other industrialized nations. These barriers to quality healthcare are exacerbated for marginalized communities that have long-standing issues with engagement and treatment by the healthcare system. 

MemoryWell is transforming the culture of healthcare through the power of storytelling. We partner with healthcare organizations to put their patients at the center of care by sharing their life stories and corresponding data insights with care providers. 

Our network of more than 700 journalists interview patients and produce brief personal history narratives. With each life story MemoryWell writes, it captures 70 data points around Social Determinants of Health (SDOH) that empower providers to see a more holistic view of the individuals within their network and the social environments they live in and connect patients to necessary resources.

MemoryWell’s stories can be accessed on electronic medical records and they are also portable, aiding in care transitions and care coordination. Our proprietary, HIPAA-compliant platform enables stories to be shared securely and care team members can view them across different health care systems. 

MemoryWell has the capability to provide a digital community for patients with rare diseases. Stories can be shared, with patient permission, and searchable by disease and diagnosis.

MemoryWell grew out of our founder’s experience caring for her father, who had Alzheimer's. When she moved him into a senior community, she was asked to fill out a questionnaire about his life. This made no sense: who would remember pages of hand-written data for 100+ residents in that community? Instead, as a longtime TIME Magazine correspondent, she wrote his story and it changed his life. Two of his paid caregivers were Ethiopian and they'd had no idea he'd served in Ethiopia early in his United Nations career. They became his champions and his care was personalized and transformed. 

Our entry into the market was working with seniors in memory care, like her father: people who could no longer speak for themselves. Our life stories gave them a way to be seen, known, and heard by their care staff. We have since expanded through hospice and palliative care, primary care at home, Medicare Advantage plans and physicians’ groups. 

We believe our narratives, and data, can help every patient regardless of age, particularly for vulnerable people with complex care needs and those from disadvantaged communities that cultural disconnect with the providers. 

This solution is especially well suited for adaptation for the one in 10 Americans who are living with rare diseases, as they navigate the complex healthcare system and often a large disjointed network of care providers. MemoryWell has contracted with the Washington-DC based EveryLife Foundation for Rare Diseases to write life stories for patients with rare diseases in the past to empower patients to advocate for themselves and raise awareness about their illnesses and the need for increased medical research.  An example, Ryan Dant’s story, can be found here. Ultimately, life stories will help improve person-centered care for patients with rare diseases.

Our solution addresses the following needs: 

• Improving the patient-provider relationship and care coordination

• Identify and addressing SDOH needs

• Aiding in cultural competency

For the average rare disease patient, there is a lag time of six years between symptoms and diagnosis. Seeing different kinds of providers along this “odyssey,” patients and their caregivers find themselves repeating the patient’s story over and over again. This is burdensome on patients and caregivers and hinders relationship building between patients, caregivers, and healthcare providers. Patients with rare diseases and their family caregivers have to be their own experts and advocates, adding complexity to these relationships and increasing the need for improved communication.  Patient life stories can become an essential tool for building trust and relationships quickly. Further, sharing life stories between care providers can aid in improving disjointed care coordination and transitions, giving new providers a head start in getting to know their patient and avoiding stress for patients and caregivers who often feel like they are starting back at square one.

Black and Hispanic patients tend to die at higher rates by rare diseases; at the same time, they are underrepresented in clinical studies. Frequent, often specialized, healthcare appointments are expensive and burdensome and require reliable transportation and time off work. MemoryWell obtains important SDOH data that can assist healthcare providers in connecting patients to resources to address social barriers to accessing health care.

Cultural considerations and competency are also vital to optimizing person-centered care for patients with rare diseases. Each patient has a unique cultural context influencing their decisions, especially for rare disease patients. To effectively ascertain and achieve patients’ goals of care, providers must get to know their patients and what matters most to them. Life stories offer an invaluable bridge to having these conversations.

We are a group of journalists, technologists and people with clinical, research, and business experience with the skills, professional networks and life experience in family caregiving to build and scale our solution. Our team includes family caregivers of people with rare diseases. We have experienced the difficulty and isolation that goes along with searching for diagnosis and treatment options for rare diseases. Using our diverse and complementary skill sets, we have dedicated our careers to understanding and amplifying the voices of vulnerable populations. This prize would also allow us to formally engage a rare disease advisory council to provide guidance on adaptations of our service to best serve patients and families living with rare diseases.

We are applying to this challenge to provide the financial support to pilot life stories as an intervention for patients with rare diseases. Healthcare organizations are keenly interested in the potential for life stories to promote person-centered care, as demonstrated by our current partnerships and our NIH-funded Small Business Innovation Research grant. In order to build a sustainable financial model, we need the time to prove out the return on investment of patient life stories and the specific healthcare outcomes it can improve.

MemoryWell is a high-touch, human-to-human engagement solution in an increasingly depersonalized healthcare system. MemoryWell is the most comprehensive biographical solution available on the market. We are the only company that a) uses professional writers, b) digitizes the data in a searchable way, c) makes stories directly relevant to care and d) offers two-way input from both families and staff. 

Our proprietary, HIPAA-compliant platform enables stories to be shared securely and care team members can be invited to view them across different health care systems. Patients can also invite family and friends to view their stories and add photos.  If they choose to, patients can make their stories public and MemoryWell can make the stories searchable by symptom or by diagnosis.  We are already integrated into technology tools being used by senior care providers including IN2L, PointClickCare and Grandpads. We are also integrating life stories into the electronic health record through our NIH Small Business Innovation Research grant.

Our platform can be used to share life stories between rare disease patients and the stories can be searchable by symptoms and diagnosis, aiding in essential community building among these patients.

Impact goal 1) Improve person-centered care for people with rare diseases. We will achieve this through amplifying rare diseases patient voices in their care and medical record, thereby increasing provider knowledge of patients, enabling them to see the person beyond diagnosis. We will also improve the patient-provider relationship by building trust, respect, communication, rapport, cultural competency, and by reducing stigma

Impact goal 2) Improve care coordination. We will achieve this by sharing patient stories with multiple providers. We will ensure that providers read the patient’s story by creating educational materials and strategies for patients to share with new providers.

Impact goal 3) Build community and connection for people with rare diseases. We will accomplish this by providing rare disease patients with brief, professionally written life stories for them to share with whomever they choose. MemoryWell would serve as a platform for community building for patients to seek out stories of other patients with rare diseases, with capability to search by symptoms and diagnosis.

Impact goal 4) Assist in alleviating social determinants of health-related needs for people with rare diseases. We will do this by obtaining SDOH insights through their life story interviews, sharing these with healthcare providers, thereby enabling providers to better understand these needs and connect patients to resources.

Impact goal 1) Improve person-centered care for people with rare diseases. Indicators of progress toward this goal will include measures of provider knowledge of patients as perceived by both providers and patients as well as patient and provider perceptions of trust, respect, communication, rapport, stigma.

Impact goal 2) Improve care coordination. Indicators include measures of qualitative perceptions from patients and caregivers on the burden of care coordination and care transitions. We will survey providers on either side of care transitions to assess the utility of life stories in this context.

Impact goal 3) Build community and connection for people with rare diseases. We will track the number of life stories shared and engagement with the MemoryWell platform. We will also survey patient and caregiver perceptions of community-building.

Impact goal 4) Assist in alleviating social determinants of health-related needs for people with rare diseases. We will track the number of SDOH needs identified and referrals to resources. We will also measure patient and provider perceptions of assistance with SDOH needs

Our theory of change is informed by MemoryWell life story pilot research, findings from two particularly pertinent studies are presented below, corresponding to each pathway on the theory of change. These findings are from one pilot study with a palliative care organization and our current NIH-funded Small Business Innovation Research (SBIR) study on implementing life stories in the acute care hospital setting. Data collection has recently started for the SBIR study, we have completed our first round of qualitative interviews with care providers but have not interviewed patients and caregivers yet. These studies and the theory of change have also been informed by other similar narrative intervention studies, including My Life My Story at the Veterans Administration. 

Humanizing patients: In a pilot with a palliative care organization, post-MemoryWell life story intervention, 100% of providers indicated “I know my patients well”, increasing from 86% prior to intervention. Post-MemoryWell life story intervention, 100% of providers also indicated they felt a strong connection with their patients, which increased from 86%. Findings from qualitative SBIR interviews indicate similar results; providers described life stories allowing them to see the patient beyond the diagnosis, as well as improving the patient-provider relationship through building rapport and trust, cultural competency, and better communication. 

Amplify patients’ voices: In the palliative care pilot study, pre-intervention, patients/caregivers indicated the “Care Team really knows me or my loved one”: 63% Agreed/Strongly Agreed pre-MemoryWell life story intervention and 84% post; “I trust my Care Team,” 83% Agreed/Strongly Agreed pre-intervention and 100% post; the provider “helps me or my loved one with non-medical needs” 58% Agreed/Strongly Agreed pre-intervention and 79% post.  One patient summarized why the MemoryWell experience was meaningful to him in this way: "They take the time to get to know me and my family, which means a lot, rather than just treating me as a medical patient. They get to know me holistically. I would say they not only care for me, they care about me."

Share patients’ stories with care providers: While care coordination was not a focus of the palliative care pilot, findings from the SBIR study are promising. Clinicians have indicated that sharing life stories would be incredibly helpful for care coordination, transitions and continuity. Given that care transitions and coordination necessitate communication but are often marked by poor communication, the evidence that life stories can improve communication also indicates that life stories would be useful in this context.

Identify SDOH needs: In one pilot with a palliative care organization, we captured more SDOH needs than previously identified for 30 of 37 patients in the pilot. This resulted in additional patient intervention according to social workers. In the SBIR study, clinicians have expressed the need for including SDOH needs in the patient life stories.

Our core technology is a proprietary content management system implemented as a web application. We run the story and data collection workflow end-to-end from patient referral to writing, editing and dissemination to care staff and family members. A user-generated Life Story Timeline that enables family and friends to share their memories - or track their care journeys - to supplement the story.  Our core technology is built with and around the best practices of HIPAA compliance.

MemoryWell’s company culture strives to be a place where everyone feels safe, has their voice heard, can be open with ideas and collaborate together while being true to themselves. At MemoryWell we provide diversity, equity, and inclusion training to all employees in order to ensure we are delivering the workplace that we are proud of and makes every employee feel comfortable and able to express themselves. Our employees come from all walks of life and we take the time to learn about each other’s backgrounds in order to show our support. We ensure our policies are created to protect and support each individual employee in the workplace along with the culture and mission of the company. We believe in empowering our employees with the necessary resources they need to be successful in their careers based on their needs in the workplace. MemoryWell encourages each employee to share their ideas and thoughts whether big or small in order to contribute to the success of the company. At MemoryWell, we value all employees and their contributions to a diverse, equitable and inclusive workplace. 

Our revenue model is driven by three streams: Life story product sales, data analytics and our newest product: a human-to-human patient engagement service for Medicare Advantage plans. Life story product sales are driven mainly by Life Stories + Timelines ($150-200 per story, based on volume). 

At scale, we anticipate we will have a secondary market for data analytics, based on capturing hard-to-get SDOH data through our interviews. We also expect to apply predictive AI/Machine Learning analytics that will enable paid caregivers to engage their patients better, improving health outcomes and reducing unintended costs. 

Healthcare companies, including payers along with primary care, home health, palliative and senior living providers are our target customers. MemoryWell is paid by the healthcare company for the story service subscription, which provides a personal interview and professionally written story, story data analysis and insights, workflow integration, patient enrollment, and more.

Our revenue model is driven by three streams: product sales, data analytics, and our newest product: a human-to-human patient engagement service for Medicare Advantage plans.

For life stories, healthcare companies, primary care providers, home health, palliative and senior living providers are our target customers. MemoryWell is paid by the healthcare company for a story package ($150-200 per story), which provides a personal interview and professionally written story, story data analysis and insights, workflow integration, patient enrollment, and more.

At scale, we anticipate we will have a secondary market for data analytics, based on capturing hard-to-get SDOH data through our interviews. We also expect to apply predictive AI/Machine Learning analytics that will enable paid caregivers to engage their patients better, improving health outcomes and reducing unnecessary costs.

Our newest product, the human-to-human patient engagement solution for Medicare Advantage plans, launches this year and is designed to reduce member churn for Medicare Advantage plans. We target regional payers, with a 3.5 star rating or lower. We charge $200 per enrollee to provide a highly personalized Welcome Experience for members at high risk of churn. Our pricing model will progress to a per member, per month rate–offering a 2 to 1 return on investment for the payer. We project we will have five Medicare Advantage partners by the end of open enrollment in early 2023 and $1 million in annual recurring revenue by the end of 2023.

We have more than $200,000 in revenue from partnerships with healthcare organizations. We have raised $3.5 million total including grants and investor funding. Investors include notable social impact funds, strategic health care investors, and experienced backers focused on the applied use of deep-tech solutions. They include Argon Ventures, Bob Davoli from Gutbrain Ventures; PBJ Capital and Andy Palmer from Koa Lab; Inflect Health; Pixel Perfect Ventures; One Planet VC and Innovations for Impact.

We have also been awarded a $500,000 Small Business Innovation Research grant by the National Institute of Aging to partner with UCSF to examine the feasibility and acceptability of using life stories for older adults with Alzheimer’s and dementia in an acute care setting and incorporating these life stories into the electronic health record (EHR). Data collection is underway for this project as well as developing EHR implementation at UCSF.