Despite advances in medical science and technology, many patients in today’s healthcare system lack access to information about their illness, how to avoid complications, or how to communicate with their providers, while the electronic records systems that store our health information can seem frustratingly fragmented. The consequences of communication gaps can be seen throughout the system, too often leading to diminished quality of care.
Using technology to empower patients to reach their health goals proactively, with less reliance on the traditional model of recurrent face-to-face physician appointments, may offer one of the best options for helping patients as well as our stressed out healthcare system. IHPI members are proving that a variety of accessible information tools can help patients, caregivers and providers connect and stay on track. Meanwhile, IHPI members are also studying policy options around optimizing our nation’s health information technology infrastructure to help ensure those systems can exchange information in a more meaningful way that results in safe and timely patient care.
I believe that technology holds the key to many of our access issues.– Amy Cohn, Ph.D., an engineer whose research on healthcare focuses on robust and integrated planning for large-scale systems
Going mobile, social, & global—to conduct research in Type 1 diabetes
In many ways, our healthcare system is still in the analog age, with its paper charts, fax machines, and a culture of “doctor knows best.”
IHPI members are creating the vision for a new era of medicine powered by mobile technology, social media, and engaged and empowered patients.
For example, they are harnessing the creativity and real world experience of an online community of more than 19,000 patients and caregivers with type 1 diabetes from around the globe using a do-it-yourself mobile technology for monitoring blood sugars called Nightscout.
Patients and caregivers designed the system without the assistance of healthcare providers or industry. Instead, they used open source code, leveraged the widespread availability of mobile phones and wearables, and used a private Facebook group to collaborate and disseminate the technology.
It is time for healthcare stakeholders to embrace not only new technologies (mobile technology and social media) but a new participatory culture, which welcomes patients as partners for achieving innovation and transformation inside the healthcare ecosystem.– Joyce Lee, M.D., M.P.H.
They are working with colleagues from the School of Information to study the role of technology and identify innovations in diabetes management, using both qualitative and quantitative analysis of social media data. Supported by a grant from the Patient Centered Outcomes Research Institute, they are also working with the patient/caregiver community to develop a patient-driven research collaborative innovation network that uses the tools of mobile technology and social media for accelerating the speed and scale of diabetes research.
Learn more: Creating a maker movement for health
Tech support for patients and caregivers
IHPI member John Piette, Ph.D. M.S., has studied "telehealth" for over a decade, creating interventions to help underserved, low literacy populations both in the US and in other countries. Among the programs he has developed and tested in Honduras, Columbia, Mexico and Bolivia are cellphone-based interventions to help patients manage chronic conditions. "Providers and family members struggle to ensure that people living with diabetes and other chronic health problems get the help they need," says Piette, a professor in the U-M schools of Public Health and Medicine, director of the Center for Managing Chronic Disease and a senior research scientist in the VA Ann Arbor Healthcare System.
Piette recently collaborated on a study of participants with chronic diseases such as diabetes, high blood pressure and depression. The intervention tested used cell phones, a technology that is virtually universal even in the poorest rural areas. Subjects received weekly calls, checking on blood sugar levels and other health metrics. One group's results were shared with caregivers or family members, another’s was not. Those who had a caregiver or family member involved in the process were twice as likely to complete the health call and to report excellent health, suggesting that involving someone else—even from a long distance—can make a difference.
My first experience in health services research was during the AIDS epidemic. I saw huge racial, ethnic and gender disparities in length and quality of life for patients with HIV/AIDS. I came away thinking that even if we can’t cure all chronic diseases, we can make strides in improving patients’ lives just by getting everyone, regardless of their circumstances, the services and support they need to stay well.– John Piette, Ph.D., M.S., who creates interventions within “telehealth” to help underserved, low-literacy populations better manage their health and the health of loved ones
A related study explored the support patients receive from informal caregivers, as well as the support and encouragement those caregivers need to cope. "Patients need help to take their medications as prescribed, adhere to dietary changes and get to follow up appointments. Yet many patients fail to meet in many ways, these self-care goals," said Piette. “The spouse, family member or friend providing care can play a key role in encouraging the patient. But often the burden of caregiving leaves individuals struggling with emotional strain, depression and increased rates of chronic disease themselves.”
The intervention studied included both patient-focused education delivered through weekly automated phone calls and feedback and suggestions provided to family caregivers via email. The results clearly indicated the benefits of both intervening to encourage patients and educating and empowering their caregivers. Patients reported better medication adherence and fewer physical and psychological symptoms. And the group of caregivers who received feedback reported less strain and depression than those who did not receive the email support messages.
"Family caregivers often have no access to the kind of informational support that health professionals have,” explains Piette. “We would never tell a nurse or a doctor, 'Guess what, we're not going to give you any training or resources for follow-up,' but that's exactly what we’ve traditionally done for caregivers."
"We're working to create solutions that don't depend on doctors and nurses doing more," he continues. "A lot of family caregivers are worried that they don't have the expertise to effectively help their loved one, which is stressful. Today’s social networks are more spread out geographically, too. We need to find new ways to bridge these gaps to help family members play a role in caregiving, even from a distance."
Sexual rehabilitation after prostate cancer treatment
Regaining and maintaining a satisfying sex life is an important contributor to quality of life after prostate cancer. IHPI members and collaborators at UCLA Medical Center, Emory University, Johns Hopkins University and New York’s Memorial Sloan Kettering Cancer Center recently secured grant funding for a web-based intervention to provide sexual rehabilitation to prostate cancer patients and their partners. U-M is the coordinating center for the trial; if successful, the intervention is expected to be widely available in 2018.
Choosing the right bariatric procedure—there’s an app for that
Obesity is among today's most prevalent and intractable public health challenges. Bariatric surgery, arguably the only treatment proven to produce long-term weight loss in morbidly obese patients, has also been shown to resolve obesity-related co-morbidities, improve quality of life and increase survival.
Despite the fact that bariatric surgery is considered a ‘highly preference-sensitive medical issue,’ only limited decision aides are available to help patients compare the benefits and risks of the four bariatric surgery options, and none can be customized to the individual patient. That is, until now. An IHPI team has developed a smart phone application that combines data from a large clinical registry with information supplied by an individual patient. Patients receive a real-time, continuously updated, customized picture of the risks and benefits of each surgical option.
We are struggling to engage patients through health information technology and better access to their data. Despite the fact that IT is deeply interwoven into the fabric of our lives, for most consumers, health IT has meant very little if anything at all... The reason is straightforward: most patient portals and personal health records are not making patient data understandable, useful, and engaging.– Julia Adler-Milstein, Ph.D., whose research tracks the adoption of health IT in the U.S. healthcare system and its impact on the cost and quality of care
Bridging the information gap
During the 2014–15 Ebola outbreak, essential information about patients’ international travel histories was gathered in physician offices and hospitals, but in many cases those data were not reflected in electronic health records (EHRs). The communication gaps of the Ebola crisis were a cautionary tale for IHPI members interested in strengthening the dialog between doctors and nurses in the era of electronic records. An ongoing study led by Milisa Manojlovic, Ph.D., R.N., and funded by the Agency for Healthcare Research and Quality (AHRQ) is looking at the many ways physicians and nurses use not only EHRs, but pagers, phones and tablets to find ways to improve provider-to-provider communications.