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Patient Participation in Research: Towards Meaningful Engagement

“If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it.” Leonard Kish

Have you detected a recent upsurge in activities concerning patient engagement in health research? If you are involved in patient advocacy, you may be increasingly aware of discussions around the importance of patient-oriented research. However, despite strong acknowledgement of the benefits of engaging patients in research, gaps still exist between the theory and the practice of patient engagement.  This article explores the ways in which patient participation in health research can move beyond rhetoric towards activity which results in research better aligned with meaningful patient outcomes.

What is patient participation in research?

You may notice that there is a wide range of terms used to describe patient oriented research.  Depending on which country you live in, you’ll hear a variety of terms from “patient/public/service/user/engagement,” to “participatory research,” “patient and public involvement,” and “co‐researcher/ co‐investigator.”

While there may not be a consensus for the terms used to describe patient oriented research, there is one fundamental concept that sets it apart from traditional research. In the past, patient participation was limited to involvement as research subjects. Research was undertaken by researchers to and for patients.  When patients are actively engaged, research is undertaken jointly with them.   This is an important step in ensuring that the real-life experiences of patients are considered in determining research priorities that are most relevant to patients themselves.

Why should you engage in health research?

There are many reasons why you may want to get involved in health research. Perhaps you wish to understand the research behind your disease and hope that involvement will give you direct access to knowledge of new treatments. You may also want to find a way to put your personal knowledge of the healthcare system and your experience of your condition to good use. In this way you can play a part in improving care for other patients. Those patients who take an active part in aligning research with real-world needs of patients and caregivers report feelings of increased self-confidence. By developing a stronger advocacy voice they feel more empowered, respected, and valued.

By engaging in research you can broaden the agenda beyond that set by health professionals and researchers. As someone who directly experiences illness and medical care, you can bring the perspective of what it is like to live with a disease. You’re uniquely positioned to contribute to research by sharing important ideas about what research would be most beneficial to you and other patients like you.  

How can you get engaged in research?

Patients can be engaged across a spectrum of research from planning and priority setting to disseminating findings. The deeper the degree of participation, the greater the influence you will have in decision making.    Becoming involved at the outset of the research project means you can identify relevant research questions and meaningful study endpoints.

Historically, researchers have framed questions which are not particularly relevant to patients. As an example, the research priorities of patients with osteoarthritis of the knee and the clinicians looking after them, were shown in a study to favor more rigorous evaluation of physiotherapy and surgery, and assessment of educational and coping strategies. Only 9% of patients wanted more research on drugs, yet over 80% of randomized controlled trials in patients with osteoarthritis of the knee were drug evaluations.


Research Stage 

Level of Involvement

Identifying/Prioritizing Determining the research topic, alignment of priorities, and identification of research questions.
Design Ensuring that the research methods are sensitive and appropriate for study participants.
Management Recruiting study participants; conducting interviews; being an active member of a steering group.
Data Analysis Highlighting findings that are most relevant to patients; summarizing the research for lay audiences.
Dissemination Improving access to patients via peer and social networks and accessing difficult-to-reach patient groups.

How do you know if participating in research is right for you?

It’s important to understand the reasons why you are being asked to take part in a research project. You and the research team should have a shared and clear understanding of what you are being invited to do.  Sometimes researchers look for patient participation to fulfill a funding requirement, without being clear about the role that patients will actually take.  Without a clear understanding of what meaningful engagement looks like, researchers may end up including patients solely to tick a funding box. Taking part in this kind of tokenistic research can be extremely unsatisfying and leave you feeling undervalued and frustrated.

Asking the following questions of the research team can be useful to help you decide whether or not a particular research project is right for you.

  • What level of involvement do you want from patients?
  • What change can happen as a result of this engagement activity?
  • What is my role? (Ask for a written “job” description.)
  • Are there any particular skills you are looking for? Do I need to understand research methodology, acronyms, and technical language? Will training be provided if I’m not familiar with research processes?
  • What is the time commitment you will expect of me? (You should take into consideration your other work or family commitments. For instance will you need to take time off work to attend meetings?)
  • Where will meetings be held? Are there accessibility issues you need to be aware of?
  • What preparatory work will be required to carry out in advance of meetings (e.g. pre-reading?)
  • How will I know if my input is incorporated in the research findings?
  • If my feedback isn’t used, will you share the reasons why not?
  • Are you paying patients? (Reimbursements for out‐of‐pocket expenses should be viewed as an absolute minimum.)

If you’re not satisfied with the answers you receive to these questions, then you should consider whether the project is something worth giving up your time for. Participating in research is time-consuming and sometimes it can be emotionally and physically draining. Consider too at what point you are in your own health journey. Will participation in research place an added burden on your treatment or recovery?  In making the decision to become involved in research, you should always balance your own health needs with the desire to be supportive of research and the research process. Heed the advice of pediatric neurodisability advocate, Jennifer Johannesen “if there is insufficient effort to justify and substantiate what is being asked of you, or it’s unclear as to why you’re involved, you can decline.”

Meaningful engagement is about shifting the traditional paradigm of patients as passive participants, to one in which we are fully involved as active contributors who have a sense of ownership in outcomes. You need to be able to trust that you are being genuinely heard and your concerns are being acted upon. Look for projects that champion diversity, reciprocal trust, and strong sustainable relationships. Ask for no less than this – research that respects your unique perspective and expertise and values your contribution as an equal partner in the research process.

A Patient Engagement Manifesto– 6 Principles of Partnership

Recently I presented at a conference on the topic of patient engagement. I spoke to the audience, mainly comprised of digital technology start-ups, about the need to find ways to engage patients meaningfully in healthcare design.  Too many developers think they understand what patients need, but in reality, many appear to be motivated more by the cleverness of a technology than actual improvements in health outcomes.  A 2015 study from the New York University School of Medicine Department of Population Health reported that only 29% of smartphone owners using health apps say the apps have made a big impact on their health.

In thinking about this month’s blog topic, it occurred to me that it might be useful to have some guiding principles you can turn to when you are next called upon to take on a patient advisory role. Whether it’s a clinical trial, a new app, or improving hospital safety standards, patients and caregivers are increasingly becoming engaged in the design process.  However, not every organization understands how to engage patients in a purposeful way. Frequently patient participation never moves beyond a tokenistic consultation or a tick box exercise. So it’s up to us as patients and caregivers to lead the way and show the healthcare industry what meaningful engagement really looks like.

In my talk, I presented a roadmap to guide developers towards a worthwhile way to engage patients. A roadmap can be equally relevant to you as a patient advocate to guide your participation in the co-design process. Each of the following six principles reflect the value of patients as experts with rich insights and experience. Never underestimate the expertise you bring to healthcare and don’t allow others to minimize your contribution. Lived experience is equal to other forms of knowledge, evidence, and expertise.  Clinicians may be experts in disease, developers in technology, but you are the expert in your own life. You know better than anyone what it takes to live with your condition every day and which challenges you face in managing your illness. Ultimately, it is your insights that will help build a better healthcare system or solution.

6 Principles of Patient Engagement – From the Patient Perspective

1. Engage Us in Ways That Are Personally Meaningful

In an article entitled, Who Gives Us the Right to “Empower” Patients? , the authors point out that the health care system “continues to focus on engaging patients in behaviors that are deemed desirable from a mainly biomedical perspective: taking medications as prescribed, or maintaining a BMI below 25, for example. These desirable behaviors are considered universal, and it is assumed that all patients should engage in them to be optimally healthy. No space is left for individual patient goals, needs, desires, abilities, backgrounds, and other factors that make humans, and humanity, so rich and diverse.”

You cannot design health care solutions or services without taking into account patient values and preferences and the context in which we live our lives. Healthcare is complex; it’s connected to a lot of things which have nothing to do with technology. A failure to recognise the complexity of health systems and the reality of patients’ lives will continue to lead to short-sighted health initiatives.

2. Engage Us Where We Are – Not Where You Wish We Were

The most successful health applications are those that understand the real-life problems that come with living with a condition and creates solutions that meet real life needs. If an application does not solve a problem for the patient, it will not be adopted. As Amy Tenderich, founder of Diabetes Mine has said, “we will use tools that answer our questions and solve our problems. We will avoid tools that help us do what you think we should do and we won’t use tools that add to the work of caring for ourselves.”

Alex Butler, in an article entitled How To Build Successful Mobile Health Applications, wrote, “The question is not, ‘Does it solve a problem for the developer, or even the patient’s clinician?’ The real question is, ‘Does it help the patient directly? ’  If an application is in any way a hindrance, or adds any further time to the investment people must make into their healthcare, it will not be used.”

3. Engage Us Early in the Design Process

A report by Accenture revealed that just two percent of patients at hospitals are using proprietary health apps provided for them. This staggeringly low figure represents an alarming waste of resources. Accenture concluded that hospital apps are failing to engage patients by not aligning their functionality with what patients actually need. For example, only 11 percent of the apps surveyed offer at least one of three functions most desired by patients: access to medical records; the ability to book, change and cancel appointments; and the ability to request prescription refills. If those hospital app developers had worked with patients from the earliest design stages, they would be much more likely to produce an end product that patients would actually want to use.  “Co-design,” in the words of Renza Scibilia in her recent post Co-designing Co-design, does not mean showing a finished product to someone and asking for ‘feedback.’” It’s about involving patients right from the start of the design process.

Similarly, when it comes to research, it’s important that patients frame the research question. Historically, researchers have framed questions which are not particularly relevant to patients. As an example, the research priorities of patients with osteoarthritis of the knee and the clinicians looking after them, were shown in a study to favor more rigorous evaluation of physiotherapy and surgery, and assessment of educational and coping strategies. Only 9% of patients wanted more research on drugs, yet over 80% of randomized controlled trials in patients with osteoarthritis of the knee were drug evaluations.

4. Engage Us in Progress Reports

Genuine engagement is about shifting the traditional paradigm of patients as passive participants, to one in which we are fully involved as contributors who have a sense of ownership in outcomes. However, I’ve lost count of the number of times I’ve been involved as a patient advisor on a research proposal or steering committee and received no updates on its progress.  In her brilliant post, Patient Engagement: You’re Doing it Wrong, Isabel Jordan captures the feeling of being used which many of us feel in this situation. “I traded my family’s story for what, exactly?” she asks, “I don’t know, because I was never informed. Engaging patients means keeping us informed of the results of engagement. What happened to me is harmful. It took me from my home, away from my family, put me in a place of vulnerability, and put me in a place where I wasn’t respected.”

Sue Robbins, another vocal advocate of meaningful engagement agrees, and asks the question “how is it that patients and families are used for their stories and then crudely discarded? Why has even the common courtesy of responding to emails gone?”

5. Engage Us as Equal Partners

I also believe that valuing patients as equal partners extends to paying them for their time and expertise. Not everyone agrees with this position. But if those round the table are being paid, why not the patient who is also sharing their time and expertise? As Annette McKinnon, a founding member of the Patient Advisors Network (PAN), puts it, “patients can work as hard as anyone else in the health professions, and yet they are the only ones at the table with no badge, and who are not being rewarded for their efforts?”

Tessa Richards, writing in the BMJ, puts forward arguments both for and against payment. Whether or not to pay a patient is contextual, however, she is clear that “in a consultation where other experts are being paid for their time, patients and patient advocates should be too, and this should be standardized. My time and experience are as valuable as any other person at the table who is getting paid for being there. It amazes me how often patients are just expected to be thankful to be invited.” To quote melanoma patient advocate, Kay Curtin, “This is a re-shaping in many ways of what are the defined roles in research. We are talking about the patients knowledge and experience being of equal status to that of all the other interested parties on what research grant money should be spent on.”

(Note: The Change Foundation in Canada has developed a useful decision tool to guide organizations on whether to pay “patient engagement participants.”)

6. Engage Us Beyond Our Stories

Jordan is unequivocal when she says, “stop engaging patients if you’re not actually ready to partner with them.  Stop using our stories to get money for your research and your clinical programs. Our stories belong to us. If you’re going to use me, then I’d better be making decisions with you.”

Engaging with us starts with our stories, but it shouldn’t end with our stories. We are so much more than just “the patient story.” Dig beneath the story and you will find that a patient isn’t a disease with a body attached, but a life into which a disease has intruded. Our stories are not pawns to be used and then discarded.  Respect and value them for being, in the words of David Gilbert, Patient Director @SussexMSK, precious ‘jewels from the caves of suffering.’

(Note: PAN provides some excellent tips on its website, for patients and caregivers who are asked to share their story or experiences. It includes the advice to decline to share your story if you are not emotionally ready to do so.)

Final Thoughts:  Be Prepared To Say No

In a thought-provoking and wonderfully—articulated post on the nature of meaningful patient involvement in pediatric neurodisability research, Jennifer Johannesen suggests that “if there is insufficient effort to justify and substantiate what is being asked of you, or it’s unclear as to why you’re involved, you can decline.”  I am in full agreement with Johannesen and find myself increasingly turning down requests to participate in projects these days on this basis.

I firmly believe that a shift away from the rhetoric of patient engagement towards a genuine model of partnership, needs to come from the ground-up. We as patients have to be, in Johannesen’s words the “conscience, and the critical voice.” We need to challenge patient tokenism and push for real outcomes. We need to spur organizations to design solutions that not only work technically, but make a real difference in the lives of patients.   Only then can we hope to see the true meaning of patient engagement become a reality. To steal a line from David Gilbert, “nobody is going to take us seriously if we don’t.”

 

Wondering how YOU can advance MPN research?

September is Blood Cancer Awareness Month and we’ve spent the month focusing on ways you can become a more empowered patient. If you missed our recent webinar: What YOU can do to advance MPN Research, the replay is now available. As always, we’d love to hear from you about ways you’ve empowered yourself!

17 Tips For Patient Engagement

To kick off 2017 and new year of patient engagement and empowerment, we are showcasing 17 tips from patients, caregivers, and leaders throughout the industry. A special thanks to our partner, The Conference Forum and their Patients as Partners US program, for helping to obtain a few of these excellent testimonials. Their tips and advice are as follows.

 

1. Jack Aiello

“Patients and their care partners need to get educated about their disease and become their own best patient advocates.  The internet can be a great resource where disease specialists create videos on topics from disease overview to treatments and side effects.  And by getting 2nd and 3rd opinions from disease specialists, you put yourself in the best possible position to make good decisions with your doctor.”


2. Randy Broad

One very important aspect of treatment, especially at the time of diagnosis, is to understand what treatment options your oncology team is recommending and why.  Many providers have ‘pathways’ which determine how a specific cancer (and stage) be treated.  Be sure to fully understand what’s behind and underneath this directive.  Many times it can be determined based upon cost, not best options currently available.”


3. Matthew Zachary

“Patients have the right to survive with dignity and quality and we deserve to be treated age-appropriately. More so, they also have the right to be made aware of the relevant support resources they are entitled to so they can get busy living. This is what it means to face cancer.”


4. Cindy Chmielewski

“Knowledge is power. Educated patients are empowered. Educate yourself. Join a support community either in-person or online; follow the #mmsm hashtag on Twitter; subscribe to disease appropriate YouTube channels, listen to webcasts/podcasts presented by patient advocacy organizations and engage in meaningful discussions with your healthcare team.

Be a partner in your care. “


5. Jennifer Ahlstrom

“Don’t be afraid to speak up. Patients who ask their doctor questions, ask for explanations and treatment rationales get better outcomes. Myeloma is a very complicated disease and there are now an incredible number of treatment options available for patients. If you don’t feel comfortable asking your doctor questions, it’s time to find another doctor, preferably a myeloma specialist who treats hundreds of myeloma patients.”


6. Marie Ennis-O’Connor

“Becoming an empowered patient means taking personal responsibility for your health. You engage with health care providers and systems in ways that are proactive, rather than reactive. You take positive steps in the direction of the care that is right for you.”


7. Scott Riccio

“Remember that YOU get to define value for your own care.  Nobody can read your mind, though, so you have to share what you value, how it impacts you, and what tradeoffs you are willing to make to get the outcomes YOU want.”


8. Andrew Schorr

“Ask your doctor questions! How can we be sure my diagnosis is 100% accurate? How much experience do you have treating this illness? Are there other tests that can help me get the most on-target treatment for my case? What are all the approved medicines for my situation? Why would you recommend one over another? What clinical trials could be right for me, whether or not you have them at this clinic/hospital?”


9. Esther Schorr

“As a care partner, it really is a time to be hopeful as the advances in cancer treatment are moving very, very fast. As it is for the patient you love, it is key to stay educated about advances in treatment options that might be right, and be actively involved in discussions about genetic testing and clinical trials.  It’s also critical to lean on your personal community…friends, family, counselors…in order to “keep it in the road” and retain realistic optimism. As more and more survivors and care partners reach out to each other and share stories, we all gain insights and perspective – and you will hopefully feel supported along the cancer journey. We are all in it together, and we are here for each other.”


10. Amy Ohm

“Caregivers need self-care to effectively care for a loved one – always make sure to put on your oxygen mask first! It can be incredibly challenging to focus on ones health with the daily demands of care-giving. Make 2017 the year you assess your own health and strive to reduce daily stress. Connecting privately with those who relate and to share experience to learn from others can help. We want you to be health in the New Year!”


11. David Wallace

“It is imperative that you gain a solid understanding of your disease so you can become your own advocate.  Connecting with other knowledgeable patients via social media or online forums to learn what has worked or failed to work for them is a good start.  Understand the treatment options that are available to you.  See an MPN specialist who will work with your local hematologist.  If you are not being treated with care and respect, don’t hesitate to seek a 2nd opinion and change doctors until you receive the level of care you deserve.”


12. Carol Preston

“NEVER hesitate to ask questions.  In fact, write down your questions in advance, take them with you to your appointment and go through them one by one.  Be sure to write down the answers (or get your care partner to take notes) as a short pencil is far better than a long memory.  Better yet, record the QA on your smart phone so that you can listen later to the answers as you’ll retain only about 10% of what the doc tells you during your appointment.”


 13. T.J. Sharpe

“Patients and caregivers can be better engaged in 2017 by reaching out to their patient community and actively becoming involved in the support of fellow patients through person to person and group interaction.  Patients and their caregivers can raise the bar for everyone involved in healthcare so that the expectations of patients as a partner in their care is not just accepted, but standard and demanded by patients.”


14. Marilyn Metcalf

“Set our goals together in the New Year, and then work together on our plans and make them happen.”


15. Durhane Wong-Rieger

“Patients are basically a heterogeneous lot, coming with all types of experiences and talents, as well as desires and needs.  Some patients want to have a voice in high-level  policy and system decision-making; some want to extend a personal hand of support.  The more diverse the channels and opportunities for involvement, the more patients can take active and meaningful roles. Every person naturally wants to feel respected and empowered so it doesn’t take much to engage patients: provide a portal, support, information, acknowledgement and most important action.”


16. Deb Maskens

“Patients and caregivers get information from a wide variety of sources, from personal anecdote to television advertising to medical journals. Empowerment and engagement for patients and caregivers in 2017 needs to start by providing them with more information that is trusted, balanced, and objective. Information is power. Let’s give patients and caregivers the information they need as the first step for them to be empowered and engaged in treatment decisions that are right for them as individuals.”


17. Jeff Folloder

“Resource management.  I’m not talking about managing the funds to pay for treatment or care.  I’m talking about managing you.  I got great advice from a lady in a waiting room at MD Anderson.  She told me that every day we wake up with a bucket of energy that we can spend on anything we want and it’s gone at the end of the day.  We can spend that energy on quality things and be tired and fulfilled.  Or we can spend it on silly things like worry and regret and go to sleep tired and empty.  She’s right.  And I remember her words every day.”

The Best of 2016

As 2016 comes to an end, we would like to take a moment to highlight a few of our most popular posts from each month and to thank the people who contributed to the popularity of these posts. We cannot thank the authors and organizations enough that have contributed to make 2016 one for the books, such as Marie Ennis-O’Connor, Melissa Van Houten, Treatment Diaries, David Wallace, Marcia Donziger, and Edward Leigh. Your efforts to Patient Empowerment Network are greatly appreciated.

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January

Designing With The Patient In Mind

Marie Ennis-O’Conner  explains how the potential of digital technology will never be realized if unless the stakeholders work alongside patients in co-designing solutions that will truly engage, enable, and empower the end-user.

Edward Leigh’s Top 366 Tips

After a decade of work and personal experiences, Ed created the educational tool – Engaging Your Patients 2016 Calendar. In this calendar, there is a tip-a-day to connect, interview and educate patients in the hopes of improving patient satisfaction and safety.

February

5 Simple Steps to Become a Twitter Pro

Short how-to for beginners to learn how to use twitter to become educated and empowered patients

Complications Post Cancer Treatment

From Treatment Diaries, a “cancer free” patient shares the daily complications from the treatments that cured the cancer.

March

Shared Decision Making: Putting The Patient At The Center of Medical Care

Marie Ennis-O’Connor explores the importance of shared decision-making (SDM).

Tweetchats: What Are They? How Can I Participate?

A concise guide to help you understand and participate in Tweetchats.

April

The Power of Content Curation For Healthcare Communities

Marie Ennis-O’Connor explains the importance of more accessible, understandable, and credible healthcare information rather than just more untrustworthy content.

Chronic Lymphocytic Leukemia (CLL) 101 Storify

CLL 101 is an online course offered through ePatient101.com created in partnership with the Patient Empowerment Network and Intake.me. To introduce our course, a #patientchat was held on March 18 at 1 PM EST and the included tweets are some highlights from the chat.

May

MRD Testing For Myeloma: What Is It?, Why Should It Be Used?, and Why?

Interview with C. Ola Landgren, MD, PhD, Chief, Myeloma Service Memorial Sloan Kettering Cancer Center.

Latest Research and Advancement in Multiple Myeloma

Interview with Thomas Martin, MD, Associate Director at the Myeloma Institute UCSF Medical Center.

June

Living Well With CLL

Interview with Patient Advocate, Jennifer Abraham.

What is Telehealth? How Can It Benefit Patients?

A concise explanation of telehealth plus top ways that it can benefit patients

July

The Conversation: Getting The Right Treatment and Testing For Lung Cancer

Panel Interview with lung cancer experts Emma Shtivelman, PhD, Chief Scientist Cancer Commons, Mary Ellen Hand, RN, BSN, Nurse Coordinator Rush University Medical Center, and Stage 4 Lung Cancer Patient, Mary Williams.

A Person Centered Approach To The Care of Chronic Illness

Marie Ennis-O’Connor describes the need for chronic illness patients to be treated as whole people rather than pieces of people.

August

Spotlight on: MPN Cancer Connection (MPN-CC)

Interview with David Wallace, founder of PV Reporter and MPN Cancer Connection.

How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News

Marie Ennis-O’Connor shares her tips to separate fact from fiction when searching for reliable medical information.

September

Seven Steps to a Successful Digital Advocacy Strategy

Marie Ennis-O’Connor gives seven tips to engage your audience online and inspire them to take action around your cause by using digital tools and applications.

How Can Cancer Patients Contribute To Science?

From the Lung Cancer Town Meeting in Chicago, Illinois, Janet Freeman-Daily interviewed Dr. D. Ross Camidge about how lung cancer patients can contribute to cancer research.

October

The Benefits and Pitfalls of Blogging About Your Illness

Marie Ennis-O’Connor shares some of her concerns and experience about blogging about her illness.

Thanks to Social Media, Rare Progress on Rare Diseases

Recently, social media has been a big part of advances in how we identify and treat rare disease. Patients with these diseases are for the first time able to reach across geographic and cultural borders to band together, giving critical mass to efforts like fundraising and clinical trial enrollment that might otherwise wither away.

Chronic Illness: Oh, The Stress of It All 

Melissa Van Houten shares her story and discusses the stress that comes along with a chronic illness.

November

The digital sherpa™ Workshop Main Takeaways

Overview of our pilot digital sherpa™ Workshop.

What Records Should You Bring For A Second Opinion Appointment?

From the Lung Cancer Town Meeting in September 2016, the panel of lung cancer experts talk about what patients should bring to their second opinion.

5 Lessons Learned From An Ovarian Cancer Survivor

MyLifeLine.org founder and ovarian cancer survivor, Marcia Donziger shares 5 of the lessons learned after she was diagnosed with ovarian cancer at age 27.

December

Looking Back On 2016 With Andrew Schorr

Amy Gray interviews Andrew Schorr on his thoughts about the advances in cancer treatment in 2016.

15 Tips To Get the Most From Your Doctor’s Visit

In her latest blog, Marie Ennis-O’Connor, gives 15 tips to help you become a more empowered and engaged partner in your own health – and the health of those you care for.

15 Tips To Get the Most From Your Doctor’s Visit

beautyHave you ever had the experience of leaving the doctor’s office wishing you had remembered to ask a certain question? Or have you left it until the very end to tell your doctor about the real reason for your visit? These so-called “doorknob” questions – bringing up an important concern just as you are leaving the office – can mean your doctor won’t have time to adequately address your concerns. When the average time it takes for a doctor’s visit is fifteen minutes, it’s easy to feel rushed and forget what you wanted to say, or to leave an appointment unsure of the information you have heard. But with a little advance preparation you can learn how to make the most of those fifteen minutes. Follow these fifteen tips to become a more empowered and engaged partner in your own health – and the health of those you care for.

1. When you call to make your appointment, explain clearly why you need to see the doctor. Let the receptionist know how much time you will need to schedule for the visit. If you have any special needs, such as wheelchair access or interpretive needs, let the office know in advance.

2. Be sure to that where you make your appointment accepts your insurance. You can call or go online to your insurance website to see a directory of in-network providers.

3. If this is your first visit to a new physician, gather together any past medical records and family medical history to take along with you.  If you’re seeing other doctors and have information they’ve provided, bring this along too.

4. Write down a list of your symptoms before the visit. It’s a good idea to keep a diary so you can chart your symptoms over time. Include details of the type of symptoms you are experiencing, when these symptoms began, and what makes them better or worse.

Use this common medical mnemonic to guide you.

(O)-P-Q-R-S-T

  • Pain (“Where does it hurt?”)
  • Quality (“What does it feel like?”)
  • Radiation (“Does it move anywhere?”)
  • Scale (“How bad is it? How much does it affect you?”)
  • Timing (“When did it start? How long does it last? Does it come and go? Is it gradual or sudden in onset? What makes it better or worse?”)
  • Other (“Any other symptoms?”)

5. Set the agenda at the start of your visit. Did you know that a patient has an average of 23 seconds to state their concerns before a physician interrupts? According to an article published in The Journal of the American Medical Association, only 28% of doctors know their patient’s full spectrum of concerns before they begin to focus on one particular concern, and once the conversation is focused, the likelihood of returning to other concerns is only 8%. Doctors have a limited amount of time for office visits. In order to use their time wisely they usually set the agenda and control the visit as much as possible. To avoid this happening to you, prepare in advance the top two or three concerns you want to raise with your doctor. Are you looking for a diagnosis? Do you need a new treatment plan or a modification of an existing plan? Are you looking for help with feelings of fatigue or depression? Don’t forget to describe your emotional state and any personal circumstances which may influence your physical health. Write down your main concerns so you are ready to verbalize them clearly at the beginning of  your visit.

6. If you use a self-tracking device, like a Fitbit, download your data and summarize the findings beforehand.

7. Bring a list of all medications you are currently taking, including over-the-counter medications, vitamins, herbs, or supplements. If you have a smart phone or tablet, it’s useful to take pictures of your medication and supplement labels to show the doctor.

8. During your visit, tell your doctor you would like to take notes. If you would prefer to record your notes via your smartphone, ask your doctor if it is ok to do so.

9. Medical care is a conversation. So to have influence in that conversation you have to speak up. If you don’t want the treatment your doctor recommends (or you’re not sure), it’s reasonable to ask if there are other treatment options available. Never be embarrassed to tell your doctor if you don’t understand something she has said. Sometimes doctors use medical jargon without realizing they are not explaining things in terms we understand. Repeat what the doctor has told you to be sure you understand and ask for clarification if needed

10. If you find it difficult to speak up for yourself, or you are facing a potentially challenging diagnosis, bring a friend or family member along for support. This person can also take notes and help you remember what was discussed later.

11. Always be honest with your doctor. You may not like to admit how much you drink, or smoke, or if you have stopped taking your medication because of expense or side effects, but your doctor needs to know about these and other lifestyle matters to ensure you are receiving optimum care.

12. Ask you doctor to explain any test results to you, Request a copy of the results for your own files.

13. Before you leave, be sure you understand what needs to happen next. Do you need any further diagnostic tests? When will you get the results? If you have just received a diagnosis, what are your treatment options? If you have questions or concerns later how should you contact your doctor? You can also ask if your doctor recommends any specific reading materials or websites about your condition.

14. If you have been given a prescription for a new medication, do you understand how and when the medication should be taken? Are there any side-effects, for example drowsiness, you should watch for? How will you know if the medication is working? What happens if you miss a dose?

15. After your visit, review and file your notes along with any test results or other documentation and billing you received. Schedule any follow up tests or appointments right away.

Your relationship with your doctor is one of the most important you have. Advance preparation will help you use your own time and your doctor’s time more efficiently and effectively. When people take an active role in their care, research shows they are more satisfied and do better in how well treatments work. Preparing for your doctor’s visit is an important step toward becoming a partner in your own health care and a better advocate for your health and well-being.

Engagement For Seniors

As the healthcare industry moves towards a more patient-centered model, they cannot forget about the fastest growing segment of our population, the older adults. According to the US Census Bureau, 72 million Americans will be 65 or older by 2030. With this growing and aging population, how can offices, hospitals, and healthcare professionals engage seniors? It’s no secret that engaging people in their own health care, especially through shared medical decision making, results in improved health outcomes, improved patient satisfaction, and cost savings. Below are several examples for how senior engagement can be achieved.

Clarify medical communication

With age comes the natural decline of hearing and seeing, so keeping educational tools more visual and basic is crucial. That coupled with avoiding medical jargon will help older patients become more engaged. According to Solution Reach, keeping it simple is best:

“Although the senior community desires to be more technologically savvy, they are often still learning; they require guidance to catch up to the knowledge and experience of the younger generation. It may seem obvious, but sticking to the basics will ensure that landing pages, advertisements, emails, and other promotional materials are easy to read and understand.”

Engage beyond the office

Going beyond the doctor’s office and utilizing digital technology has been proven to improve the patient experience, such as follow-up prescriptions/appointments, treatment discussions, access to EHRs, and medical reminders. Capstrat highlights adherence problems (i.e. taking medications, exercising, following a specific diet, attending therapy, etc) as a main problem that gets worse with age. Reminders, tips, or motivation via email, snail mail, or social media can help to combat these issues. Understanding and honoring their preferred means of communication is one of the first steps. However, healthcare professionals should still realize they have the same ethical responsibility with these methods as they do in the office.

Don’t forget the caregiver

The need to include the patient’s caregiver is essential for older adults. The caregivers are often times the children of the patient and are the ones handling the finances, medications, transportation to appointments, etc. The caregivers spend a substantial time with the patient, while the doctors and other HCPs time is limited, demonstrating this need to include them. Capstrat suggests incorporating them by adding caregiver contact information onto new-patient forms online and offline, and sending treatment information directly to the caregiver.

Utilize technology

According to Welltok’s Senior Health and Technology Survey, more than 50% of seniors use tech to improve health. This survey also pointed out that most seniors do not use wearable, but would be willing to use a health program accessible on a computer or mobile if recommended by a doctor. What does this mean? Older patients are relatively tech-savvy and are looking for resources that are both useful and useable.

Organize resources

Keeping track, organized, and up to date on all your medical records is a big undertaking. According to MedCity News:

“… there are a lot of resources available from AARP, Medicare, retail pharmacy programs, but it is a lot to manage and navigate. Seniors need help organizing everything they need to accomplish their goals in one place. This population requires a consumer-designed platform offering a single channel for presenting benefit, health-related and other resources to support them.”

The senior population is an expanding group with their own specific needs for engaging in their healthcare. Healthcare entities would be wise to understand, honor, and cater to those needs.


For those older adults that don’t quite have it all figured out yet, Patient Empowerment Network is excited to launch its first digital sherpa™ Workshop this fall in Florida with the hopes of expansion in the future. This workshop is designed to parter the tech-savvy, college students with the not so tech-savvy, older patients with each other for tips and tricks on how to navigate the internet and social media to better their healthcare. Sherpa Logo

References:

www.healthwise.org/insights/healthwiseblog/mmettler/september-2014/2264.aspx

www.solutionreach.com/COMPANY/blog_viewer/are-senior-citizens-engaging-in-healthcare-technology

http://medcitynews.com

Online Patient Engagement Course Well Worth It!

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I am taking Stanford University’s course, Engage and Empower Me: Patient Engagement Design  and I am very happy with the experience.

This course is open to anyone and is really about How to engage patients to improve the healthcare experience for all. This class is the first of a series of courses to be offered by MedicineX and the new Stanford Medicine X Academy.

As stated in the course description, the goal of the course is:

“ to educate you about participatory medicine and empower you to create a more inclusive, collaborative healthcare system for patients. During this course, you will learn the science of habit formation, behavior change, and decision-making. You will gain knowledge about how human-centered design can empower people and help them make healthy choices. Finally, you will discover how social media platforms can be used to create robust patient communities and how self-tracking devices can provide day-to-day data points that motivate people to make positive changes.”

There are no prerequisites and the course is free. There are numerous guest speakers from patients to academics, industry leaders, researchers, and healthcare providers. The content is mainly video clips and there are quizzes along the way, so you have to pay attention! There are also Google hangouts each week with a neat little tech gadget that allows you to “like” or “not like” what is being said. When you “like” the comment, you hear applause (I thought that was a cute trick!) And there are conversation or discussion boards where you can post comments regarding a specified topic and you can read and think about what others are saying.

I did learn quite a bit from this course. It is difficult to modify behavior or engage individuals, and this course talked about the science of engagement and what it takes to engage people. And of course, you can apply the strategies and lessons learned to reach your own personal health goals, to help others reach theirs, to create innovative healthcare solutions on a small or large scale, or to be a more empathetic and inclusive healthcare provider.

Dr. Larry Chu

Dr. Larry Chu

I spoke with Dr Larry Chu, one of the designers of the course. Dr Chu is Associate Professor of Anesthesia on the faculty of the Stanford University School of Medicine and studies how information technologies can be used to improve medical education and collaborates with researchers in simulation and computer science at Stanford to study how cognitive aids can improve health care outcomes. Dr Chu is the Executive Director of Stanford Medicine X.

 

Dr Chu explained that through Medicine X and the new Stanford Medicine X Academy, he wants to offer 2 certificates of learning; one for industry leaders and healthcare providers (HCPs) and another for patients.  The current course that I am taking is geared towards the HCP audience and will be required for that certificate. Courses for the certificate offered specifically for patients are due to start Spring 2015. From the website  :

“The certificate, awarded by Stanford Medicine X, will focus on the what, how, why and strategies for becoming ePatient leaders.”

Dr Chu is dedicated to the idea of patient engagement and empowerment. And he is dedicated to providing accessibility to education. When asked to give his thoughts on the course and why he created the Stanford Medicine X Academy, he answered,

“Online courses like this one provide accessibility to education. The course is about what it means to engage patients for industry and healthcare providers. True engagement requires culture change, and starting a discussion is a first step. I am happy with the discussions around the course potential. Courses like this one can be powerful tools to get people to think about the issues of engagement.”

Please consider going to the Medicine X website and watching some of the videos, reading their blog or perhaps enrolling in one of their courses. There is a spring course offered in Design for Health – design innovation to improve healthcare – that sounds very interesting.

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