The Coming of Age of the Health Care Consumers and PHR

The pendulum of the doctor-patient relationship has tilted towards the direction of the patient. The traditional active-passive relationship whereby the doctor plays the dominant role in the decision making process and the consumer taking a passive role is slowly eroding. What is taking place now is we have consumers who are informed and with the knowledge that they acquired through the Internet and their personal health record (PHR), they demand an active participation in the decision-making process and management of their health. I believe that this is a disruptive movement that will continue to pickup an even stronger momentum over the next few years. It will have a very significant impact in the landscape of health care delivery methodology because their goal is to position the consumers at the center of health care reform. The rise of healthcare consumerism, e-patients, participatory health, consumer empowerment, patient power and activated participation are the new terms to describe this consumer movement of increasing popularity. PHR provides consumers the ability to review and modify their medical records and thanks to the Internet, consumers can access their PHR anytime and anywhere. Smart phones are by far the most popular mobile device due to its convenience. There is an increasing development of clinical applications for the smart phones and soon according to Bettencourt (2010) “you can send and store health care information, research, and monitor your biometrics wherever you are. You don’t have to carry an extra device either; it’s all on your phone”.

What are the changing forces behind this movement?
• Foremost is the Internet. According to a Pew research on The Social Life of Health Information, 61% of adults go online to search for health related issues.
• We are seeing an increase in PHR popularity due to the adoption of health information technology and the Internet. Deloitte’s 2009 survey of healthcare consumers shows that 42% of consumers want online PHR that is connected to their doctor. Kaiser Permanente reports that as of 2008, 40% of’ their membership signed on to their PHR eleven or more times. On the same report, their second quarter 2009 survey shows that 91% of their members who signed up for PHR are either satisfied or very satisfied with their patient portal which is kp.org.
• The Internet paved way to blogs, emails, social networks and text messages for open forums and exchange ideas. Secretary of State Hilary Clinton in her speech on Internet freedom said, “We stand for a single internet where all humanity has equal access to knowledge and ideas”.
• Consumers are no longer confined to workstations and personal computers to access the Internet, emails, social media and such. The advent of mobile devices as a portable convergent device allowed consumers instantaneous communication whenever and wherever they are.
• Although by no means perfect, government polices are addressing the demands of the consumers by passing legislations in response to consumers’ clamor of active participation of their healthcare. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) grants patients with access to their medical record and make amendments to it if appropriate. In addition, one of the goals of the American and Rediscovery Act (ARRA) of digitizing health information is to “provide patients and their families with timely access to data, knowledge and tools to make informed decisions and to manage their health”.
• The health care information and wellness promotions by the media, libraries, employers and community centers are contributing to health care awareness of consumers.

What are the key consumer groups that will demand changes to the future landscape of the doctor-patient relationship? The aging baby boomers who are both patients and care givers are actively involve in managing theirs and their family’s health care. They demand quality health care and home based care. This group is showing an upward trajectory in the utilization of PHR’s as well as social media tools such as social niches, blogging and chatting. Those with chronic care problems are drawn especially to social media primarily for support groups and self-help. A study by the California Healthcare Foundation in 2008 reported that safety net populations of this same age group are also eager to access their electronic health records and have sufficient computer skills to do so. Safety net populations are typically those situated in rural areas and have a lower social-economic status. Their limited computer access will be solved when patient-centric applications will be made available through the smart phones. The second group is what the Pew categorizes as the millennials who fall under the age bracket of 18-29. According to a Pew survey on Demographics of Internet Users, 93% of this age group uses the Internet. Digital technology and social media are deeply entrenched in their daily activities. While older physicians tend to favor in-person consultation, the younger doctors are comfortable with email communications, video consultations and self-care. I think the combination of the younger clinicians and the millennials will fully utilize “technology as enabler” and will embrace and will integrate those initiatives that have seen slow in adoption such as EMR, telemedicine and social media into their health care management. I think email will become the de-facto communication for doctors and patients. Lastly, I think electronic messaging will become extensions of PHR for alerts, reminders and such and utilizing computers for what they are best at using the rule of complementary.

Since my background is in IT customer support, I was curious to know what are the challenges faced by health care providers in providing customer support to online PHR applications. Contrary to one’s belief, consumers require a significant technical support more so than clinical or educational support. Security and privacy remain the number one concern of health care consumers; consequently, access to PHR requires a time sensitive activation key/code and a multi-step authentication factor process that can be challenging if not frustrating to some consumers. A study done by Wiljer, Urowitz, Apatu, et al (2010) reports that “access to their PHR with real time test results warrants a support centre and should be staffed by a person that can assist with technical support contacts by phone, email or in person and be able to refer users to clinical and educational support if necessary”. Currently technical support of PHR is offered in a variety of methods primarily through email, phone and a combination of both if customers are having a great deal of problems. Support hours range from business hours only to 24x7. Since this service is not reimbursable by any means, providers are minimally offering it. As part of cost containment measure, IT customer service is primarily offered to internal staff only and staffing is typically based on a penetration rate of approximately 1.1% of total user population. With increasing number of consumers signing up for PHR, I predict that there will be more studies in the very near future regarding the cost, benefits and the efficacy of such a service. Additional recommendations from the study include designing a streamlined online registration process, reasonable duration and length of activation keys and a self-service password-reset process.

The success of PHR is measured on how engage consumers are to it and whether the consumers will perceive it as a ‘value-added’ to their health management process. In my opinion, the following are considerations relating to the future of PHR design.
1. What is the best infrastructure to support PHR? Will it be Health 2.0 which is the Health-on-the-web?
2. Is standalone PHR better or will a pre-populated PHR with flexible, standardized and interoperable data more conducive? Today, although thriving and evolving, there are no standards relating to PHR. There is plenty of work to be done relating to standardization and data inter-operability, both of which also plague the electronic medical record (EMR) development process.
3. What are the PHR design considerations that will elicit the most and best response from consumers? Leonard et al. (2008) suggest that patients’ involvement should not be limited to access to lab results, etc., but “a comprehensive information source and support – essentially a decision support tool that promotes learning and self-management”.
4. How can we measure efficacy of the PHR based on consumer outcomes?
5. What are the support design considerations with regards to security and confidentiality that can ensure quick and appropriate access to PHR?

In conclusion, there are plenty of development opportunities for PHR in the future. Active participation of consumers and the integration of technology information are important key components in its development.


References


Bettencourt, A. (2010, March 8). Smartphones Lead the mHealth [ Web log post ]. Retrieved from http://rememberitnow.com/blog/2010/03/08/smart-phones-lead-the-way-in-mhealth/

Clinton, H. (2010). Remarks on Internet Freedom. Retrieved from http://www.state.gov/secretary/rm/2010/01/135519.htm

Demographics of Internet Users. Retrieved from http://www.pewinternet.org/Static-Pages/Trend-Data/Whos-Online.aspx
Eytan, T., Potter, H. (2010, March). Driving Total Health with Health IT and Health 2.0. Symposium conducted at the meeting of the HIMSS Annual Conference & Exhibition, Atlanta, GA.

Leonard, K., Casselman, M. Wiljer, D. (2008). Who will demand access to their Personal Health Record?. Futurethink, Healthcare Quarterly. (Vol. 11, p. 4).

Siedman, J., Eytan, T. (2008). Helping Patients Plug In: Lessons in the Adoption of Online Consumer Tools. Retrieved from http://www.chcf.org/search/index.cfm?qt=seidman

The Social Life of Health Information. Retrieved from http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information.aspx?r=1

Wiljer, D., Urowitz, S. Apatu, E., Leonard, K., Quartey, N., Catton, P. Understanding the Support Needs of Patients Accessing Test Results Online, JHIM, 24(1), 57-62.
“2009 Survey of Health Care Consumers: Key Findings, Strategic Implications”. Deloitte Center for Health Solutions (2009). Retrieved from http://www.deloitte.com/view/en_US/us/Industries/health-care-providers/center-for-health-solutions/health-care-consumerism/60ea5a1264001210VgnVCM100000ba42f00aRCRD.htm