HIMSS - Personal Health Records for People with Chronic Conditions

Editor's Notes

1. Evantage Consulting consults for healthcare clients We have designed solutions for people with chronic conditions We realized the importance of close monitoring of health information Puzzled by low adoption of PHRs Managing Partner Robin Carpenter passionate about the subject too Evantage decided to create an internal project to probe further We will talk about our research and what we uncovered
2. PHR is initiated by the individual Provides patients health history Individual gathers information from various sources Individual can share it easily with others Traditionally patients maintained paper records Today, there are a number of online tools to create a PHR
3. EMR is different from PHR Considered a clinical document that includes physician notes Maintained by physicians office, clinics, hospitals
4. There are different types of PHR solutions Provider sponsored – MyHealtheVet is the VA’s PHR Payer sponsored – Many insurance companies are offering it to their clients Employer sponsored – Dossia is a big one in this category Independent – Google and Microsoft more known than others
5. Overall goal is to help patients take more responsibility of their health Policy makers & developers highlight the intended consumer benefits Support wellness activities Improve understanding of health issues Increase sense of control over health Increase control over access to personal health information Support timely, appropriate preventive services Support healthcare decisions and responsibility for care Strengthen communication with providers Verify accuracy of information in provider records Support home monitoring for chronic diseases Support understanding and appropriate use of medications Support continuity of care across time and providers Manage insurance benefits and claims Avoid duplicate tests Reduce adverse drug interactions and allergic reactions Reduce hassle through online appointment scheduling and prescription refills Increase access to providers via e-visits Source: National Committee on Vital and Health Statistics, 2006 http://www.ncvhs.hhs.gov/0602nhiirpt.pdf
6. Participatory model: Individual and clinicians are making shared decisions Important to note that this includes the INDIVIDUAL who was previously absent The PHR helps provide information to the patient about their health
7. My take away from the health2.0 conference in SF earlier this month Highlights patient ‘and’ physicians role in managing a health record
8. California HealthCare Foundation found that 40% of the people chronic condition who has used a PHR made a positive change to improve their health. A number of other studies with heart patients also shows a positive correlation between close monitoring of physiological factors and the health outcomes.
9. This becomes more relevant when you take into account that nearly half of Americans have one or more chronic diseases. Chronic diseases are ongoing, generally incurable illnesses or conditions such as heart disease, asthma, cancer and diabetes. These diseases are often preventable, and frequently manageable through early detection, improved diet, exercise and treatment.
10. Other big advantage of managing chronic conditions is to reduce the cost for healthcare spending Currently it is the single greatest cause of rising health care spending in the U.S. is rising prevalence of chronic disease. Some of the reasons cited for the rising costs are – chronically ill patients are not receiving preventive care and there is a lack of adherence to recommended medications. Significant value could be experienced by increasing patient adherence.
11. PHRs have gained traction in the recent years There are many organizations developing PHR solutions Last number hear during Health2.0 (2010) was 600 Overall billions are being spent to develop and maintain these PHRs
12. A look at the big picture of the intended benefits First create a PHR – put together all the information in one place Then update it based on health condition For most chronic conditions, track vital signs and activities between doctor visits Realize the correlation between your activities and health Take actions to improve their health Resulting in a higher engagement Increased responsibility for managing their health condition Empowered patients and improved outcomes
13. Lets make a note that this is a well represented audience
14. Wouldn’t one expect the number to be higher Consider all the $$ that are being spent to introduce new tools
15. What is the disconnect between PHRs and people with chronic conditions?
16. Industry studies indicate some known barriers Like concerns around data privacy, feeling that they don’t require a PHR Cost, time and dislike for computers are some other barriers
17. Study by PEWInternet highlights people with chronic conditions less likely to have internet access
18. Evanatage has worked with people with chronic conditions Many resign to their health condition and loosing motivation to comply with self-management tools In context of PHRs: this could lead to infrequent updating of the records That could significantly impact its effectiveness
19. We looked for factors that could help turn this around Our past work suggests that caregivers play a significant role in managing health of patients with chronic conditions
20. A high percentage of Americans play the caregivers role
21. Out of them, many caring for a 50+ It is likely that that 50+ years old has a chronic condition
22. Survey conducted by Evantage Consulting Indicates caregivers play a significant role in managing chronically ill people Makes a case to consider the involvement of caregivers in managing a patients PHR
23. Replacing the individual with a caregiver and patient model
24. Here is a married couple The husband has been living with chronic hypertension for many years But when we was diagnosed with high cholesterol, the wife starts playing a more active role in managing his health
25. She teaches David how to track his weight and blood pressure regularly using a spreadsheet When she hears about Google Health, she tried it but David preferred to keep using spreadsheets He found it easier to update it on his computer without going online The wife used Google Health to keep a record of David’s medication
26. We see a shared responsibility to manage the patients health condition
27. Grandmother and Grandson Grandmother had had diabetes and recently was diagnosed with dementia Grandmother lives by herself and the grandson lives in the neighboring city He has a family of how own but takes out time to take care of his grandmother
28. He helps her with everything from cooking, cleaning to filling her pill box and take her to the doctor Based on a friends suggestion he started using Google Health to keep a track of his grandmothers medications And order prescription online
29. If you dig deeper the caregivers key need in this scenario is staying updated on the patients condition remotely
30. This is a mother – daughter relationship Mother has asthma and hypertension for many years Now that she is 81 years old, she needs help doing her daily tasks So she moved in with her daughter
31. The daughter has a family of her own For her mother she chooses a provider who can come home for home visits and had a PHR so that she can access the doctor notes and lab results online. She also has some paid caregivers who help her mother on a weekly basis. Her biggest challenge is correlating the data captured by the paid caregivers and the doctors
32. Her key need is to have a system that can streamline the flow of health data between the different care providers
33. Patient and caregiver have unique models to manage a patients health needs. These are based on Patients health conditions, age, physical and emotional wellbeing Caregivers health conditions, time commitments, motivations Patient-caregiver relationship Who is the primary person responsible for managing health needs? What role does the other person play? Do the patient and caregiver live in the same city? What is the patient and caregivers familiarity with computers/ digital tools?
34. Lone Responsibility: Only one person manages the patients health needs Shared Responsibility: Both caregiver and patient share the responsibility for managing the patients health condition Patient responsible: Manage their health condition Caregiver responsible: Manage the patient’s health (Requires coordination between the patients health and the records) Caregiver plays the primary role: Share responsibility for managing the patients health (Requires more coordination) Patient plays the primary role: Share the responsibility for managing their health
35. This is what we intended to observe
36. But this is what was observed
37. In context of taking actions to improve ones health this is a relevant finding Majority of the people are only storing information in a PHR Which is helpful but may not be help us take people from an engaged state to a state of being responsible for their health
38. What is working for people today is spreadsheets Many feel that it is easier to track activities and vital signs via spreadsheets The ability to update a spreadsheet without logging into the net is an advantage for some And the familiarity with spreadsheet makes the effort of learning a new tool more Unless the value provided by the new tool is evident
39. The features of the current PHRs seemed over engineered for the people we talked with For example it was observed that within Google Health people were only using on average 3 features They used online search to look for information on medication And cell phones to manage doctor appointments
40. People are really concerned about putting their health information online Especially on an independent PHR like Google Health and Microsoft Health Vault They worry if the PHR partners will spam them with advertisement For some it meant not accessing their lab results online but instead viewing paper copies at the doctors office
41. Caregivers could better manage a patients health needs by transferring some responsibility to them Spreadsheets helped them remember what was discussed at the doctors office, ask questions for the next appointment. There was less paperwork around the place They updated spreadsheets daily basis or once a week
42. The people we talked with realized the importance to tracking health information closely They were using simple everyday tools like spreadsheets, cell phone, search to meet their needs The PHRs they used, did not replace the spreadsheets For example some people found it cumbersome to go online everyday to update vital sign information Some found the features on Google health overwhelming
43. Varied needs – ensure all patient-caregiver models are considered Data privacy – provide this information upfront so that patients/ caregiver feel secure to use the features Set up – take into account the expertise level of the patients and caregivers, it should be as easy as the tools they are currently using Frequent updates – evaluate multiple means to enter content, text, offline tools Correlate actions with health – make it easy for patients and caregivers to understand how their actions/ activities are impacting their health. Provide them information to learn more about the ‘good’ and ‘bad’ actions Positive health actions – if weight gain is impacting the patients health, provide information on how to reduce that. Maybe link to diet plan or other programs.